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In Episode 44, Dr. Kalyani welcomes Beth, a person who has adult onset type one diabetes who will be sharing her journey with this condition. Along with Beth, we are pleased to welcome Dr. Jordan Perlman. Dr. Perlman is an assistant professor of endocrinology at the Johns Hopkins University School of Medicine. Her clinical practice focuses on using diabetes technologies in older adult populations. She is involved in clinical trials testing new algorithms for automated insulin delivery systems. She has been recognized for her work on continuous glucose monitoring metrics. and the associated risk of microvascular complications. Dr. Perlman was named a top doctor in endocrinology by Baltimore Magazine in 2023 and 2024.
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani, at Johns Hopkins. We developed this podcast as a companion to our patient guide to diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org.
For today’s podcast, it is my pleasure to introduce Beth, a person who has adult-onset type 1 diabetes who will be sharing her journey with this condition. Along with Beth, we are pleased to welcome Dr. Jordan Perlman.
Dr. Perlman is an assistant professor of endocrinology at the Johns Hopkins University School of Medicine. Her clinical practice focuses on using diabetes technologies in geriatric and disabled populations. She is involved in clinical trials, testing new algorithms for automated insulin delivery systems. She has been recognized for her work on continuous glucose monitoring metrics. and the associated risk of microvascular complications. Dr. Perlman was also named a top doctor in endocrinology by Baltimore Magazine in 2023 and 2024.
We are thrilled to welcome Dr. Perlman and Beth here today. Welcome.
Beth: Thank you.
Dr. Jordan Perlman, MD: Thanks, Dr. Kalyani. So, Beth, I know everybody is really excited to hear your story. Can you tell us a little bit about the circumstances of your diagnosis? When were you first told that you had diabetes?
Beth: Sure! Thank you again for covering this topic, because type 1 diabetes is rare, and my adult onset is the rarest of the rare, correct me if I’m wrong. It is a tough group to be in for sure. I was originally diagnosed with type 2 diabetes. It was really gestational diabetes when I became pregnant with my son, who’s now 22 years old.
I was seeing a family physician; I was young, and a friend of mine suggested that I see her doctor, who had delivered her child. So, I didn’t even go to an OBGYN. The doctor was very wonderful; he was a brand-new physician out of medical school. And what happened was my glucose test, during my pregnancy; the results apparently never made it back into my file. So, I went undiagnosed with gestational diabetes. We don’t really know how long I was undiagnosed for, but I became extremely ill, of course, in my second trimester. My physician at the time was worried I was getting dehydrated and told me to drink Gatorade (a sports drink containing electrolytes and glucose), which, of course, was just exasperating all my symptoms. Eventually I called my doctor, and he said, “You have to come to the emergency room.” They tested my glucose, which was somewhere in the five hundreds. They admitted me right away. And my physician told me that those glucose test results had not made it back into my file — he didn’t catch it. I was referred to an OBGYN who specialized in high-risk pregnancies. So, from that point on, I became a high-risk pregnancy. It was very difficult to control my gestational diabetes; I was on bed rest, and it was just difficult. After my son was born, it was a miracle, and I no longer had diabetes. They brought me a piece of cake in the hospital, and I was like, “Get that away from me!” and they were like, “We just want you to try this.” My glucose remained completely beautiful — perfect — there was no increase. That was a really wonderful moment for me.
Fast forward five years. My husband and I really wanted to try for another child, but my doctors told me that I was at higher risk, not just for gestational diabetes, but for becoming type 2 permanently. I really did everything I could to make sure I was in prime health to get pregnant. I got pregnant. We were living here in Baltimore at the time, and I started seeing a high-risk obstetrician and just a wonderful OBGYN. He managed my gestational diabetes — I did in fact develop it. It was very well controlled throughout my pregnancy. However, upon the birth of my daughter, who is now 17, I was diagnosed as a type 2 diabetic.
So, for many years, I was treated as a type 2, but I was really a brittle type 2 (diabetic). I had a lot of difficulty controlling my glucose; I was on metformin, of course, and the insulin-resistance drugs that you take. We were experimenting with different drugs. Then eventually test results showed—this was about five years ago, so I was about 45 years old or 46—test results showed that I was no longer a type 2 (diabetic). I was a type 1 diabetic, and that was pretty devastating.
JP: Wow. That is very complicated. It’s a really interesting story, and it sounds like you had to go through a lot before you got your diagnosis of type 1 diabetes with adult onset. I’m just curious, for those who are listening, if you could tell us a little more. You said that during your first pregnancy, your doctor said that you were getting dehydrated. How did your doctor know? Or how did you know that you were in trouble during your first pregnancy? What kind of symptoms were you having?
Beth: Sure. I had every possible complication you could have during pregnancy, with the exception that I never developed preeclampsia, but that was the only thing I didn’t develop. My symptoms were thirst and incredible fatigue. I remember trying to get up the stairs to my apartment, and I was just on the second floor—I felt like I was wading through six feet of snow, like my body just had no energy. I couldn’t satisfy my thirst; I was sleeping all the time; I felt like I had brain fog, and because I was pregnant, people were like, “Oh, you’re tired because you’re in your second trimester.”
My family was noticing my symptoms. I had a lot of edema in my feet and my legs. In fact, I think I had a baby shower, and two days later, I was in the hospital for extreme swelling. They were just trying to get it all under control. I developed—now this is not necessarily a symptom of diabetes, but maybe a complication—I developed severe cellulitis in my leg, which was extremely painful. They had to do an X-ray; they were worried about blood clots. I had to sign away my life to have the X-ray as a pregnant woman. I would say to family, “I’m the only one who goes into the hospital, into labor and delivery, and leaves still pregnant.” I was just hospitalized many times. Those were the early symptoms. By the time I was getting hospitalized, they knew that I was an uncontrolled gestational diabetic, but it was very rough going.
JP: You mentioned that your diabetes was then well controlled during your second pregnancy. What changed during your second pregnancy? What were you doing to control blood sugars during your second pregnancy?
Beth: The difference was excellent health care. I was now in Baltimore; I just had access to excellent health care from the very beginning. We went into the pregnancy knowing that I was going to develop gestational diabetes, most likely, and that because of my medical history, it had to be very tightly controlled. I had weekly doctor’s visits. I think by my second trimester, I was going in twice a week to see my OBGYN. And I was on insulin, so we were controlling my glucose with insulin and with a very strict low-carb diet.
JP: So, you were taking (insulin) shots during your pregnancy?
Beth: Yes.
JP: After you delivered your daughter, you were told that the diabetes had now become type 2 diabetes; were you still taking insulin after you delivered your daughter?
Beth: For a while, it was controlled with Metformin and with Liraglutide (Victoza), and honestly, I was on a few different pens for a while; I can’t even remember all of them. I had really significant insulin resistance and still do, and that’s a scary place to be.
JP: Are you talking about with regards to how much insulin you’re requiring now as an adult or how much you were requiring during pregnancy?
Beth: So during pregnancy, because I was type 2, I was on insulin, but I wasn’t on a whole lot—maybe 5 units to treat any number of carbs. I’m not being medically accurate here because I just can’t remember what my ratios were, but I was not taking a ton of insulin. Maybe my total daily dose at that time—an expression I didn’t even know to use incidentally but use now—with my second pregnancy was probably around 35 or 45 units of insulin. As I increasingly became harder and harder to control, as my daughter grew, and years went on, my A1C numbers were like 7%, 8%, or 9%, really not where you want to be. By the time my A1C was 9%, that’s really when we realized that I had become a full-blown type 1 diabetic.
JP: Yeah, so let’s talk about that transition. You may know this already, but for those of you listening, one of the ways that doctors often consider a misdiagnosis when it comes to type 2 diabetes versus adult-onset type 1 diabetes is how quickly a patient progresses from needing your typical type 2 diabetes medications like Beth described—so your oral medications and your non-insulin injectable medications like liraglutide (Victoza), semaglutide (Ozempic), and tirzepatide (Mounjaro) —and how long it takes a patient to fail those medicines and need to start taking insulin. I think you said that it took you five years to go from a diagnosis of type 2 diabetes to getting your diagnosis of Latent Autoimmune Diabetes in Adults (LADA). That is a pretty quick progression for a young person diagnosed with type 2 diabetes to go from non-insulin medications to insulin medications.
I do think that is a pretty classic red flag for a doctor to consider whether or not you might have an autoimmune process like type 1 diabetes versus type 2 diabetes. I think that that in and of itself is pretty telling. When you delivered your daughter and then you were told you had type 2 diabetes, what was your understanding of how common it was for patients with gestational diabetes to then develop type 2 diabetes?
Beth: I think my husband and I were really hopeful that if I developed gestational diabetes with the second pregnancy, I would be lucky and deliver, and I would have that magical moment I did with my son, and I would no longer be diabetic at all. I think in my third trimester, my doctor was on vacation, and I had an appointment with another OBGYN, who delivered information in a very different way to me and said, “You’re going to deliver, and you’re going to be a type 2 diabetic.” I was just like, “What!? What do you mean? Is it that certain? I’m 100% becoming a type 2 for life!?” It was really shocking. I really didn’t know just how likely it was, and I wasn’t getting bad information. I just really, for whatever reason, didn’t understand that—yes, I am most likely going to become a type 2 with my second child. Now, looking at my family and family medical history, I had a cousin who had gestational diabetes with both of her pregnancies, and she’s not a diabetic; she did not become a type 2. Type 2 diabetes is rampant in my family: my father has been a long-time type 2; I have three siblings; my sister has type 2, and my brothers are okay. My mom developed it later in life. Then just any number of aunts and uncles developed type 2 later in life. But to our knowledge, there hasn’t been any type 1 diabetes in our whole extended family.
JP: That’s very interesting. But believe it or not, it is not uncommon. Type 1 diabetes doesn’t necessarily run in families, but type 2 diabetes is very highly genetically correlated. When you were failing all of those medications for type 2 diabetes and your A1C was going up and up and up, do you remember what tests were done to determine if you had type 1 diabetes versus just difficult-to-control type 2 diabetes?
Beth: While I was type 2, I was having all the standard tests, and if you could maybe remind me of what some of them are.
JP: Yeah, if a doctor suspects that a patient may have type 1 diabetes instead of type 2 diabetes, there’s a series of tests for autoantibodies—so antibodies in the body that mistakenly target your pancreas—as well as an assessment of how much insulin your pancreas is producing. So adult-onset type 1 diabetes, classic type 1 diabetes, they typically present with at least two of these autoantibodies, these antibodies against the pancreas. And if it’s found early, sometimes patients will have some residual insulin function from their own pancreas. But oftentimes, by the time we find out that someone has type 1 diabetes, they may not have any remaining insulin function. That’s when it gets really dangerous because those patients are at high risk for a complication called diabetic ketoacidosis. That was a buzzword for a lot of people because it can mean death. It’s a really serious complication. I’m thinking that it’s likely that your type 1 diabetes was diagnosed on a series of blood tests after you continued to have a rising hemoglobin A1c using these oral and non-insulin type 2 diabetes medications.
Beth: Correct, so they did the antibody test, and I was no longer producing any antibodies, and my pancreas was no longer producing any insulin. And I cannot emphasize enough the importance of good physicians. When I was pregnant with my son, I was in Buffalo, New York, and I was young. I wasn’t really plugged into communities with young parents and people who could refer me to good health care and good physicians. All that changed when I came to the wonderful state of Maryland and Baltimore with Hopkins and GBMC.
This sounds ridiculous, but with the advent of Facebook, I eventually joined. Once it was just becoming very difficult to control diabetes, and then when I was diagnosed with type 1 diabetes. That was here in Baltimore, incidentally. But I literally got a call from a nurse, not even my endocrinologist, who called to say you’re now a type 1 diabetic. I didn’t know what that meant. I kind of knew, but she said, “You can stop all of your type 2 medications. You can stop Liraglutide (Victoza), you can stop your metformin, and we’re just going to treat you with insulin.” Then my endocrinologist, who’d been treating me for years, left the practice. So, I had no guidance. I stopped taking my type 2 (diabetes) medications. And what I’m going to tell you is that my glucose went through the roof: my glucose was at 300 mg/dL; it was at 400 mg/dL, and I couldn’t get it under control.
I didn’t know what to do, and I joined this Facebook group for type 1 diabetes. A few people reached out to me because they could tell I didn’t know anything; I didn’t know what a bolus was. I have a PhD in English, incidentally, and I know how to research things. I couldn’t figure out what I was supposed to do. Via Facebook, somebody referred me to Hopkins, and I had to wait six months as a new patient to get into him, but they said, “It’s worth it.” So for six months, I really did not have a whole lot of guidance for treating what was now my type 1 diabetes, but a friend who I’d made through the Facebook group—and I don’t recommend ever taking medical advice from anyone who’s not a physician—but she had been a type 1 her whole life. She’d been a juvenile diabetic, and she said, “Beth, take your metformin again.” And I started taking my metformin, and I was able to reduce my glucose. Not as much as I would like, but at least it was making a difference while I was waiting to get in to see my new endocrinologist.
RK: So Beth, thank you so much for sharing the challenges of trying to figure this all out. It’s so interesting to hear about the role of social media in providing some information and support. I wonder, as we talk about how difficult it can be, especially in adults, to diagnose the type of diabetes, if we could talk a little bit about what we thought was going on during your pregnancy. Often, one type doesn’t change into another. We think more often that you probably had type 1 diabetes, and it was likely misdiagnosed because gestational diabetes is very common in women when they’re pregnant. Perhaps it wasn’t until you got to the point where your body wasn’t producing insulin that they started to think about the type.
I wonder, Dr. Perlman, if you could shed some light on the misdiagnosis versus having one type versus another, because we don’t usually think about one type becoming another type, but the messaging is important. Beth, I think what you’re sharing is some of the confusion about that.
Beth: Definitely.
RK: And trying to navigate that. Dr. Perlman, I wonder if you could provide us some insights into that.
JP: Absolutely. I think the big takeaway here is that hindsight is 20/20. I think it was a totally reasonable assumption, particularly because you’d had gestational diabetes twice, and you said that you have a pervasive family history of type 2 diabetes. I do think that it was a reasonable assumption, after you delivered your daughter, that you had type 2 diabetes. But there are certain things that we will sometimes look for to indicate whether someone has type 1 or type 2 diabetes.
Oftentimes, type 2 diabetes comes with a lot of other metabolic problems, hypertension, high blood pressure, high blood lipids or high cholesterol, and obesity. Even though it is quite common for us to see type 2 diabetes after gestational diabetes, there are certain things that would make us question that diagnosis.
I think that your story of, as Dr. Kalyani described it, having to wait a long time and to wait until your pancreas stopped making insulin to get a diagnosis of adult-onset type 1 really is, unfortunately, a classic story. But yes, it is likely that you had the beginnings of type 1 diabetes and not type 2 diabetes after you delivered your daughter. And because the disease classically progresses slower in adults, it was able to hide out and pretend to be type 2 diabetes until you had no remaining insulin function and your body was dependent on insulin injections to survive. So, I do think that the course is quite classic, but I think it’s important for our listeners to understand that it was likely—it is likely—that you had type 1 diabetes after you delivered your daughter, and that it really just progressed slowly.
Beth: I do think you are absolutely correct about that. Even in just the past few years, I’m seeing more and more research on what you referenced as LADA, or latent autoimmune diabetes in adults. When I was diagnosed with type 1 (diabetes) several years ago, that was not in the conversation. I found that on a website, and I wasn’t even sure if that was in mainstream medical research yet, just as a patient looking for answers. So, I do think that you are right. I think I had a lot going on metabolically; I am treated for hypothyroid, and now I’m treated preventatively for high blood pressure, just to keep everything at bay.
JP: Can you tell us a little bit more about how you’re currently managing your adult-onset type 1 diabetes?
Beth: Thank you for asking the question because I really want to share this with people who might be in my situation. How do you control this really tricky type 1 that comes on in adulthood? I was already on a continuous glucose monitor (CGM). It was wonderful being able to see my glucose levels. I’m a huge fan of CGMs, and I’ve only ever used Dexcom, but that was my first game changer.
Then the second game changer for me was the pump (an insulin pump). I’ve been on the pump since 2020; it was the highlight of the pandemic for me. I was able to get the pump, and my insurance covered it.
Three game changers: my endocrinologist, the CGM, and the pump. My A1C was maybe still around 7.5% or 7%, still hard to get any lower than that. What I was really struggling with was weight gain from all the insulin. Because of my insulin resistance, which is so much higher than somebody who’s a juvenile diabetic and has been managing their diabetes pretty well throughout their life, I was taking—this just still astounds me—upwards of 100 units of insulin a day to control my diabetes.
I maybe wasn’t doing the best job with my diet. But I wasn’t sitting around eating entire pizzas or candy bars and ice cream, and I was still taking a hundred units of insulin. I put on 30 to 40 pounds. I had never been heavy in my life. Now I was tipping the scales; I couldn’t fit into any of my clothes; I was at the weight that I was at when I was pregnant. I was really depressed because I could not get the weight off. I go to the gym, and I get on a bike, and my glucose would instantly crash, and I’d be drinking juice, which was no help in trying to control my weight. It was really tough. Everybody is talking about semaglutide (Ozempic) and tirzepatide (Mounjaro), and it’s not FDA approved for type 1 (diabetes). Then there’s me, and there are the other type 1s who are adult onset and have insulin resistance, and mine is pretty significant. Then the insurance rejected it.
My sister, who has type 2 diabetes, is on semaglutide (Ozempic); she was just having great results. I was sitting on the sidelines thinking it’s just so unfair that my insurance won’t cover it. But we kept trying. I learned from my Facebook group that if your doctor checks the right box for your insurance that says insulin resistant, many insurances will cover it. As your listeners may know, semaglutide (Ozempic) and tirzepatide (Mounjaro), that whole class of drugs, is so expensive out of pocket; it’s $1200–$1500 a month. I just couldn’t do it; there was no way. So tirzepatide (Mounjaro) gets approved by my insurance, and that was the fourth major game changer for me. I have more energy—I’m not at a hundred percent as a diabetic—but I have more energy. I have also lost about 30 pounds. I’m fitting into clothes that I haven’t fit into for seven years. All of my numbers, all of my tests for cholesterol and high blood pressure—I am at the best health I have been at since my thirties. There was definitely a transition at first with the nausea and whatever. But thankfully I’ve adjusted to it.
JP: I know we could do an entire podcast series on insurance and coverage. I certainly want to touch on something important that you said, which is the issue of insulin resistance. I think it’s an outdated idea that only people with type 2 diabetes can have insulin resistance. Insulin resistance is something that can also affect people with type 1 diabetes.
There are many causes of insulin resistance; the one that you mentioned was weight. Unfortunately, with insulin resistance, gaining weight is a feedforward mechanism because you gain weight, you develop insulin resistance, and then that extra weight causes you to develop more insulin resistance. Then it’s a self-fulfilling prophecy. It’s true that patients with type 1, adult-onset type 1, and type 2 diabetes can all have insulin resistance. I think that moving forward, it’s going to be interesting to see what the studies show us about the use of these GLP medications and type 1 diabetes.
Going back to your use of the insulin pump, the automated insulin delivery system. Can you tell us more about how you adjusted to that as an adult? One of the things that I often think when I treat patients with adult-onset type 1 is how much easier this must be—and I’m not saying that being a child with type 1 diabetes is easy; it’s certainly not—but if you’ve lived your whole life, not having to wear devices or worry about taking insulin with your meals, I think it must be a lot harder to adjust to this kind of technology. So I’m wondering if you could tell us about your experience using this automated insulin delivery technology. Do you have any advice for other adults who may be struggling with the technology piece of this?
Beth: I love technology; I always have. I think even for those who may be averse to the idea of having tubing and a little electronic device on their person at all times, you get used to it. Like you said, Dr. Perlman, it’s so much easier. It takes the math out of it if you don’t like math, or you don’t like having to figure out your ratios of carbs to insulin. I don’t wake up in the middle of the night with my CGM going off. I think they call it the “sunrise effect,” if I’m not mistaken. But my glucose goes up in the early hours of the morning before I wake, so my t:slim pump will cover for me. It’s amazing. I have to bolus before a meal, but I just punch in how many carbs I’m going to be eating.
If you’re a type 1 diabetic, you just get really used to doing that. Before the pump, I was using apps to help me track my carb intake and my insulin usage. That was early data that I was able to give my endocrinologist before I was on a pump. It’s a lot. It’s like walking around and having to have Excel spreadsheets so you can figure out how your body is handling carbs. I pretty much just wear clothing with pockets now because I just slide my pump into a pocket, and I cut a little hole in a pocket, and that’s where my tubing goes.
You figure these things out, or if you’re in a Facebook group or you have a community—Hopkins has a group for diabetics to meet. You learn these little tricks of the trade that can make life easier. I can look at my total daily dose, and it’s just knowledge is power, and the pump gives you control over that information to give you control over your diabetes.
RK: Beth, it’s so great to hear how technology has really supported the management of diabetes for you. As Dr. Perlman mentioned, sometimes when you’re diagnosed with a chronic disease later in life, it can take some more adjustment. It sounds like you’ve adjusted and thrived so well with your current treatments. Part of the challenge that I think you’ve highlighted that I thought was worth commenting on was what we call the “overlapping physiologies of diabetes”—even though you have the diagnosis now that they found the type 1 diabetes, given your family history and the weight gain, you also probably do have some insulin resistance. We see that even with children who are diagnosed with type 1 diabetes as they get older, if they have other risk factors for insulin resistance or type 2 diabetes, we can see that high insulin need. I really do appreciate you sharing your story and especially the challenges of having not only a confusing diagnosis but maybe having aspects of both type 1 diabetes and insulin resistance.
Now that you’ve had these years of meeting with healthcare professionals, being told at various stages of testing what they think you have and what you have, and with the support of the Facebook group—how do you feel now that you have the diagnosis?
Beth: I feel so much better than I did five years ago when I was really scared. I feel like I’m tuned into my body in ways that a healthy adult or even an unhealthy adult is not tuned in to their bodies. I like that because, again, my doctors and my PCP are on top of making sure I’m managing my diabetes and any kind of complication that can arise from it. I think my children are very aware, and my husband is very tuned into my health. My husband’s phone is linked to the app because I tend to work from home, by myself, or I’m in my office by myself. If I’m having a low, my husband gets alerted, and he checks in with me to make sure I’m okay and that I have access to some quick carbs. I feel empowered to really control my disease and aim for being the healthiest that I can be so I can live a long, healthy life for my family.
JP: That’s really great. Is there anything specifically that you would want other doctors and healthcare providers to know, in terms of how we can better support individuals with adult-onset type 1 diabetes?
Beth: I think you all doing this podcast is just fantastic. I would just say, I don’t think a lot of medical professionals or endocrinologists necessarily know the great resources that are out there for type 1 diabetics. There are some great websites. These are things that were shared with me through the type 1 diabetic community. I think just making sure that patients have resources outside of the doctor visits. I see my endocrinologist twice a year; I see his nurse practitioner twice a year. That’s just two to four touchpoints a year. Diabetes is tricky, but there are podcasts like this one.
JP: In our clinic, we definitely take advantage of some of the newer technology options, particularly when it comes to helping patients learn to count carbohydrates. ChatGPT is a great resource.
Beth: Oh, wow. I hadn’t even thought of that.
JP: Yeah, artificial intelligence (AI), I think, is really helping patients with diabetes learn to do things like carb count. As Dr. Kalyani mentioned earlier, I think it’s great that you’ve been able to connect with other patients, to learn about their stories, and see if they have any “tricks of the trade” that will work for you.
RK: Thank you, Beth, for being on our podcast and for sharing your story, which I’m sure will resonate quite a bit with other listeners out there, and for sharing the resources also that you have found helpful to navigate this.
One thing I did want to ask Dr. Perlman is if you might want to touch briefly on the terminology that we now use for adult-onset type 1 diabetes versus latent autoimmune diabetes of adulthood, which is sometimes used as well.
JP: The terminology, I think, for the layperson can be tricky. I think the bottom line is just to understand that both latent autoimmune diabetes in adults versus adult-onset type 1 versus type 1 diabetes all have a very similar pathophysiology. They have a similar cause. It all has to do with autoimmune destruction of pancreatic beta cell function—so the cells in the pancreas that make insulin get destroyed. I think the more recent terminology is adult-onset type 1 diabetes. If you hear someone referring to it as latent autoimmune diabetes in adults, or LADA, they’re referencing adult-onset type 1 diabetes.
RK: It can be confusing even for us in the health care field. We can only imagine how confusing it is for a person with diabetes. The bottom line is to learn as much as you can, to understand as much as you can, and to get the treatment as promptly as you can.
Beth, your story has been so great to hear, not only about the challenges and how you were able to find support to navigate those but also to hear what a great place you’re in right now and how well you’ve been doing.
I wonder, in parting, if you might have some words for anyone out there who is struggling with their diabetes and wondering, like you did, is this the right diagnosis? Who else can I ask? What would you say to them?
Beth: I would say number one, find a great endocrinologist; research who the best endocrinologists are, and know that you can leave an endocrinologist if you’re not getting the answers that you need or want or think that you need. Number two, never give up. Never give up. This disease has its ups and downs, and I’ve certainly experienced the whole gamut, and it can get you down, but just never, ever give up on yourself or your disease. You can get control of it.
JP: That’s wonderful to hear. We definitely love the positive encouragement. I agree with you; if you, for some reason, feel in your gut that something isn’t right, you absolutely should seek out somebody who can help you find the answers. In endocrinology, that’s a big part of our job: looking for answers and making diagnoses. It was really great to hear your story, and I’m really impressed with how well you’ve integrated technology into your life as an adult and that you haven’t been hesitant. You’ve just gone for it, and I think that is really impressive.
Beth: Thank you so much. Thank you all for the wonderful work that you’re doing supporting diabetics and diabetes education. It’s just so important to have these resources and experts in the field.
RK: Well, thanks so much again for being on our podcast. We really appreciated your time and your willingness to share your story. Thanks again. Thanks, Dr. Perlman, for your expertise and shedding light onto adult-onset type 1 diabetes, which I think we are going to hear more and more about. We really did appreciate having you both on our podcast today, so thank you.
Beth: Thank you.
JP: Thanks.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org.
We love to hear from our listeners. The email address is [email protected].
Thanks for listening. Be well and see you next time.
In Episode 43, Dr. Kalyani welcomes Dr. Kendall Moseley. Dr. Moseley is the Clinical Director of the Division of Diabetes, Endocrinology, and Metabolism, Medical Director of the Johns Hopkins Metabolic Bone and Osteoporosis Center, and Co Director of the Johns Hopkins Multidisciplinary Parathyroid Clinic. Dr. Moseley received her medical degree from Baylor College of Medicine in Houston, Texas, followed by internal medicine residency training at the Johns Hopkins Hospital. Upon completion of her endocrinology fellowship at Johns Hopkins, she joined the faculty in the Division of Endocrinology, Diabetes, and Metabolism of the Johns Hopkins University School of Medicine. Dr. Mosley has a dynamic clinical practice and collaborations within the institution that focus on metabolic bone diseases, osteoporosis, hyperparathyroidism, vitamin D deficiency, atypical fractures, and skeletal survivorship. She is actively engaged in NIH funded clinical and translational research involving the relationship between type two diabetes, osteoporosis, and aging. She’s additionally involved in research investigating mechanisms by which chronic disease states, such as malignancy, HIV, hepatitis C, and cystic fibrosis impact bone quantity and quality.
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani, at Johns Hopkins. We developed this podcast as a companion to our patient guide to diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org. Today, we are thrilled to welcome Dr. Kendall Moseley. Dr. Moseley is the Clinical Director of the Division of Diabetes, Endocrinology, and Metabolism; Medical Director of the Johns Hopkins Metabolic Bone and Osteoporosis Center; and Co-Director of the Johns Hopkins Multidisciplinary Parathyroid Clinic.
Dr. Moseley received her medical degree from Baylor College of Medicine in Houston, Texas, followed by internal medicine residency training at the Johns Hopkins Hospital. Upon completion of her endocrinology fellowship at Johns Hopkins, she joined the faculty in the Division of Endocrinology, Diabetes, and Metabolism of the Johns Hopkins University School of Medicine.
Dr. Moseley has a dynamic clinical practice and collaborations within the institution that focus on metabolic bone diseases, osteoporosis, hyperparathyroidism, vitamin D deficiency, atypical fractures, and skeletal survivorship. She is actively engaged in NIH-funded clinical and translational research involving the relationship between type 2 diabetes, osteoporosis, and aging.
She’s additionally involved in research investigating mechanisms by which chronic disease states, such as malignancy, HIV, hepatitis C, and cystic fibrosis impact bone quantity and quality. Welcome Dr. Moseley.
Dr. Kendall Moseley, MD: Thank you so much, Dr. Kalyani, for having me today. I very much appreciate the ability to talk about type 2 diabetes.
RK: We are so thrilled to have you here and to talk about the condition that we don’t give as much recognition to as we should in clinical practice, which is the relationship of type 2 diabetes to bone health. I wonder if you could start off by telling us—how does type 2 diabetes impact the bone?
KM: I think that that is an excellent question. It’s funny when we think about bone disease and, particularly, osteoporosis or fracture risk—I think a lot of us have in our minds a picture of the typical person who’s going to break a bone. These are individuals, men and women; we probably think about women more than we think about men, but believe it or not, both sexes can get osteoporosis. Women typically are on the smaller side. We might even describe them as being frail. They are thinner, they have lower muscle mass, and they may look a bit unsteady on their feet. Certainly, walking down the street, you see someone like that, maybe hunched over a little bit, and you would worry about their bone health and worry about their fracture risks.
As time has passed and we have looked at some of these large clinical trials, and we have really worked through some of the data, we realized that individuals who look absolutely nothing like that woman or that man that I just described are at risk. Individuals with type 2 diabetes needing oral therapies or insulin therapies are also at risk for fracture, and they aren’t necessarily thin; they’re not necessarily frail appearing. When we look at the data, there is this increased risk of fragility fractures. So, these are not something you would have after getting into a car accident or falling out of a two-story building. Rather, we are talking about fragility fractures—falling from standing height or less, slipping on ice and breaking your wrist, or falling backwards and breaking a bone in your back; sometimes even silent fractures. We are seeing these more in individuals with type 2 diabetes, which has really given us pause to think about the mechanisms when we otherwise were not expecting it. It was a hidden complication of type 2 diabetes that is just now making it into commonplace knowledge.
RK: It does sound like, though it may be a hidden complication, a complication that can have tremendous consequences on mobility and movement. Fragility fractures, as you mentioned, we usually think of in older people, but can younger people with type 2 diabetes get this as well? Is this something that can occur across the lifespan?
KM: Absolutely. The toughest thing we have on our plates right now is the fact that we are not identifying this very often. Osteoporosis is a silent disease. Oftentimes we do not know our bones are thin until we fall, and we break a bone. We aren’t necessarily screening individuals with type 2 diabetes for osteoporosis for the reasons I just mentioned, because they don’t necessarily look like they might have osteoporosis. We are not capturing individuals until that first fracture occurs.
As we’re thinking more and more about diabetes, and then bone disease as a complication of diabetes, I think we are starting to recognize it as a risk factor for fracture. When we do that and we go back and pore through some of the data, we’re finding that, yes, individuals with diabetes—10 years are added to their bone life with a complication of type 2 diabetes. For example, a 55-year-old’s bones are more like a 65-year-old’s bones when you add on this layer of type 2 diabetes.
RK: Wow. It seems really important to recognize and even let people with type 2 diabetes know that they are at higher risk of bone disease. Why don’t we talk about this more?
KM: I think it’s important. I alluded to the screening, and one thing that we really struggle with in this population is that we have a lot of screening tests. In medicine and in diabetes, we’ve used things like hemoglobin A1C or fasting blood glucose oral glucose tolerance tests to make the diagnosis of diabetes in patients. In the osteoporosis world, where I live, our screening test for low bone density or osteoporosis is traditionally a scan called a DEXA (dual energy x-ray absorptiometry), a lot of words, which is why we call it a DEXA scan. We use a DEXA scan, which is basically a fancy x-ray where we look at the spine, we’d look at the hip, and generally the data that we get from those fancy x-rays gives us this diagnosis of osteoporosis.
It puts people on a curve based on standard deviations. That data is categorized as normal, osteopenia, or low bone density, or osteoporosis. The biggest challenge we face with type 2 diabetes, and this has now been described pretty thoroughly, is that bone mineral density testing in patients with diabetes is generally normal, if not more elevated than in individuals without diabetes of the same age.
We have a very difficult time screening people for bone disease, with osteoporosis, because our x-rays aren’t working well enough. We’re missing a lot of cases. This has generated a lot of talk as to what’s really going on. If the bones look normal on these DEXA scans, on these fancy x-rays, but patients, men and women, are still breaking their bones, what’s going on? Why are people breaking their bones despite this normal testing? We would ideally like to not have patients have a fracture before they come and sit in my clinic, and we need to talk about treating their bones. Ideally, we need better screening tests, and that’s just under active investigation that’s going on right now.
What do we think is going on? Why are people with type 2 diabetes breaking their bones? There are a lot of different thoughts, and there is no one right or wrong answer. Initially, some of the suspected causes, which are still suspected causes, would be things related to diabetes itself.
Maybe they are falling a little bit more; maybe blood glucose levels are dropping, and people are getting dizzy and falling to the ground, or maybe they have peripheral neuropathy, which is causing them not to be steady on their feet, or retinopathy, where you don’t see as well and you’re more likely to stumble and fall. Those things are not wrong; falls can be increased in individuals with type 2 diabetes mellitus. A lot of these big trials that we look at, where you filter out those risks, we are still seeing this 50 percent increased risk of hip fracture in people with diabetes compared to those without. There is up to a 25 percent risk of any osteoporotic fracture in people with diabetes compared with those without.
Thinking about that, maybe taking those off the table, there’s still this risk. Is there a medication-related side effect that we’re missing? We know that with too much insulin, you can have hypoglycemia, or with too much sulfonylurea, you can have hypoglycemia leading to falls. Thiazolidinediones (TZDs) are medications we don’t use often clinically, but through a cellular mechanism, there can be some bone loss with those medications as well.
There was a bit of rumbling about a category of drugs called SGLT2 inhibitors a few years ago; due to a large clinical trial called the CANVAS Trial, it has been somewhat refuted as time has gone on. So we are using those medications more and more, but again, looking at these same large studies and filtering out patients on those medications, we are still seeing this increased risk. So medications are not the whole story.
What about diabetes complications? Bone is one of them, but there are other organ systems that can be impacted. Kidney disease can thin the bones. Any sort of vascular disease, our bones get a lot of very important nutrients from blood flow. If there’s microvascular damage or macrovascular damage associated with diabetes, the bones inevitably will take a hit and don’t get the nutrients they need, can thin, and become weakened. We talked about the eyes and fall risks, so again, we have to take that into account.
There can be some hormonal factors that we need to think about too. Vitamin D deficiency is more common in individuals with type 2 diabetes mellitus. There can be growth hormone deficiency and certainly insulin deficiency as time goes on with longstanding diabetes. Even gonadal changes—low testosterone, low estrogen, and our postmenopausal women—can impact the bones.
Then body composition—Dr. Kalyani, you’ve done a lot of work in this—looking at body composition as we age. We know we’re going to lose muscle mass. We know we’re going to gain fat mass, but that’s particularly prominent in type 2 diabetes, where there’s probably fat mass where you don’t want it. This is inclusive of the bone marrow fat that can get into the bone marrow and cause changes in bone metabolism. Then loss of lean mass, not only contributing to falls, but bones really rely on lean mass. The push and pull of muscle against bone helps to generate healthy bone; keeping our bones active and rebuilding and remodeling is critical too. So many things at the outset are things we all suspected, and then a whole different category, which I’m happy to get into, is called bone quality, but I’ll pause there.
RK: That was great to hear all the different factors that could really lead to changes in bone and affect bone health.
You mentioned many, including some medications that we use for diabetes, such as TZDs or thiazolidinediones; those include pioglitazone (Actos) or rosiglitazone (Avandia). Then also, the SGLT2 inhibitor, canagliflozin (Invokana), which there has, been a warning, on the package insert for that medication for potential risk of osteoporosis.
It is good to know about all of these risk factors; if you know that you’re at risk, perhaps you can do something about that and be screened for it. I wonder if we could take a step back to talk about the definitions, because I know sometimes, they can get confusing. You mentioned osteoporosis; I’ve heard of osteopenia; you mentioned fragility fractures, and I know that there are other bone diseases that could also happen more commonly in people with type 2 diabetes. I wonder if you could briefly talk to us about what those diseases are and how they might be diagnosed.
KM: Starting with the easy ones, the DEXA scan will spit out a lot of numbers, but probably the ones we pay most attention to would be these things called T scores. A T score is comparing the patient against a 30-year-old. Why would we compare to a 30-year-old? We reach our peak bone mineral density as we age, by the age of 30. The best you’re ever going to get, you’ll have by the age of 30, and a T score is effectively a standard deviation.
A T score of anything greater than a -1 is considered normal bone density.
A T score of anything between -1 and -2.4 is considered low bone density or osteopenia.
Anything less than or equal to a -2.5 T score in a patient is considered osteoporosis.
It’s important we label things, even though, as I’d stated at the outset, individuals with type 2 diabetes mellitus may have normal or low bone density; they can still break their bones. The critical piece of the definition is that those DEXA scores are completely out the window if someone’s had a fragility fracture. I don’t care if the bones are normal on DEXA; I don’t care if they’re in the osteopenia range, but if you’ve had a fragility fracture, your diagnosis is osteoporosis.
Sometimes this can be hard to demonstrate to patients: even though the numbers look great, you broke a bone, you’re at risk of breaking future bones, and we need to do something about it. So that would be your spectrum of normal low bone density osteoporosis.
I mentioned osteomalacia, or softening of the bone. This is when we think about how our bones harden. Bones have different components to them: we’ve got the infrastructure of the bone, the strut work of the bone, keeping our house upright. But to really create good, strong bone, you have to have good minerals in the bone. I think about minerals as the cement of bone; these are things like calcium, phosphorus, and the collagen quality within the bone. Anytime you have deficits or deficiencies in calcium or vitamin D, that mineral, that cement, is soft, and that makes soft bone. You can see where, if there’s any nutritional challenges, if there’s any vitamin D deficiency, a lot of our patients undergo gastric bypass procedures or gastric surgery, where there may be challenges with getting those essential vitamins and minerals. When the cement just doesn’t harden the way that we want it to, we call that osteomalacia, and you can have overlapping processes too. It’s not that you fit into one category or another; patients with kidney disease, all stages, can have alterations or changes in how their bones metabolize calcium, vitamin D, and phosphorus.
The kidneys are really important hubs for how we take in calcium, how we excrete calcium, how we convert inactive vitamin D to active vitamin D, and phosphate handling. As you can imagine, if you mess with that factory, with ongoing kidney disease, you can have abnormalities with all of those important vitamins and minerals for bone health. We can see a lot of changes in bone, ranging from lots of bone breakdown to very little bone breakdown to soft bone with kidney disease.
Then something we’re seeing—I hope less of these days, as we’ve really focused in on glycemic control or glucose control in patients—is when we have longstanding vascular and nerve damage, particularly in the feet, we can see micro fractures and almost collapse of the feet. This condition is called Charcot joint or Charcot foot. This is generally in the setting of longstanding diabetes and some overlap of some of these other conditions mentioned.
RK: It does sound like there are a few conditions that could impact the bone where diabetes is involved. We talked a lot about osteoporosis and perhaps osteopenia, but it’s really good to hear about the other conditions as they can all have significant impairments on mobility and quality of life.
I think what’s sometimes frustrating for patients who develop fragility fractures is when they come into clinic and say, “But I had a normal bone density; my DEXA scan looked normal.” As you’ve mentioned, it can be hard to detect on the routine tests that we use for the general population. With DEXA, where we do see, if it’s 2.5 standard deviations below the norm for a 30-year-old individual, we would call it osteoporosis, but for someone with type 2 diabetes, that might not be the case.
It seems it might highlight the role for ascertaining these other risk factors and screening for them. Is that right? Knowing the limitations of the usual tests that we have, how can we detect those who are at higher risk for these complications?
KM: That’s a great question and certainly a clinical challenge that we all face. I think it all starts with just getting the word out that diabetes is truly a risk factor for bone disease and osteoporosis. I think a lot of us rely on screening tests to tell us what we need to do clinically. So, accepting that diabetes in and of itself is a risk factor, but then also looking at the whole profile, is there a kidney disease that’s been ongoing? Are there medications that might be additionally thinning the bone?
A lot of patients, for example, develop diabetes in the context of other conditions, high-dose steroids for maybe a rheumatologic condition or an autoimmune condition. We know that steroids are hard on the bone for several different reasons, but that should go in the risk factor list in addition to diabetes.
So maybe now you have diabetes, maybe now you have a vitamin D deficiency, maybe now you have low testosterone levels associated with these disease processes, and then maybe you get a family history of multiple fractures, et cetera. What I find most helpful, in addition to just getting the screening test, is to put together a profile of diabetes. Then consider what other things we should be thinking about that ultimately should lead us to worry about fractures or not. Probably the most critical thing is that if there is a fracture, we call it a fragility fracture, if that’s what it is, if we detect something incidentally on a CAT scan. Let’s say you go for a CAT scan because you’ve got some chest pain or you think you have pneumonia, and there’s a spine fracture on that CAT scan. That’s not normal. But really only about 20 to 30 of those actually make it into the chart as an osteoporotic fracture. They get ignored. It’s important for us as physicians, providers, and health care workers to recognize these as real osteoporotic changes, real damage to the bone, and document it as such.
There are little changes that we can make to get a bit of a better sense of fracture risk, even after the DEXA scan. Some doctors will use something called a FRAX calculator. FRAX gives the physician or nurse practitioner an overall fracture risk; a 10-year overall fracture risk, this would be a risk to the spine, the pelvis, etc.
Then a 10-year fracture risk of the hip and using some of the data that comes out of that FRAX calculator. It helps us decide whether or not to start medication for a patient. We can make some adjustments to that calculator because diabetes is not included as a risk factor.
There are other things like age, smoking, steroids, and similar things, but we can make some adjustments to that calculator as simple as checking the box for rheumatoid arthritis. Even if a patient doesn’t have rheumatoid arthritis, you could substitute rheumatoid arthritis for diabetes, and that counts then as a risk factor.
You can actually age a patient by 10 years. I had mentioned earlier that it’s a 10-year accelerated risk if you have diabetes. Sorry if we make you 10 years older, but that gives us a more accurate representation of fracture risk. You’re not taking that DEXA scan at face value. But it is tough, and it’s something we all really struggle with, because by the time they make it to my clinic, usually there has been a fracture, which is, my goal is then to prevent future fractures. But on the front lines, where patients have a lot of different things that primary care providers need to address in the moment, unfortunately, osteoporosis risk slides to the bottom of the list.
RK: The FRAX score that you mentioned, which I know I’ve seen on reports for patients that get bone DEXA scans that I order, is reported as part of the readout. It sounds like diabetes should be considered a risk factor sometime in the future, so we don’t have to make those educated tweaks to enhance or really give a better indicator of the FRAX score. Until we’re there, until diabetes is formally included, it does sound like it’s really a holistic assessment of both risk factors and using these different tools to inform clinical care. As you mentioned, people with diabetes are at higher risk of falls already; because of that too, they would be at higher risk in addition to the bone disease of developing a fragility fracture. Just to contrast that, the other type of fracture would be a traumatic fracture, is that right?
KM: That’s right. So that would be falling from a two-story building or a car accident. If it sounds like anyone would have broken a bone in that circumstance, your 15-year-old child or a 25-year-old college kid, whatever the case may be, is this normal, or is this not abnormal? Sometimes we torture patients by trying to get down into every detail of how the fracture occurred. It is important to understand those fractures to decide if it’s fragility versus traumatic, because that is going to dictate a lot of times, if you’re going to start treatment and how deep a dive you go into workup for other causes of bone loss.
There are a lot of questions around fractures, but it absolutely should be part of the intake assessment in your endocrinologist’s office or in your primary care doctor’s office. If there is a history of fracture, that is a traumatic or a fragility fracture; those should be taken very seriously. To impress upon people how serious this is—it is like someone has had a heart attack and not getting the details of a heart attack. You want to know the details because you don’t want there to be another event down the road. It is important to get the details and treat them seriously because the worst-case scenario is there’s another one on your watch, and the patient outcome is poor in those more common scenarios that we think about.
RK: It sounds like if you’ve had a fragility or a traumatic fracture in the past, detected incidentally on a radiographic scan, or you present to your healthcare provider with a fracture, that you’re at a higher risk of a future one. Is that what you’re saying?
KM: Absolutely two to three times higher within the first year. If you catch it, and you identify it as an osteoporotic fracture, it’s important to intervene on that fracture to make sure there are not future ones. As you said at the outset, Dr. Kalyani, this is a very important disease.
That’s the other thing, I probably even should have led with this, but osteoporosis is a big deal. We talk about numbers; we’ve just spent a lot of time talking about T scores and DEXAs and using all this sophisticated terminology, but why do we care about osteoporosis? In fact, in clinic, it’s what I always lead with patients: why are we even talking about this?
Fractures, they’re not fun; nobody wants to break a bone, but the problem with fractures is what lies down the road. These are things like pain, immobility, and the complications that come from pain and immobility. We think about blood clots, we think about weight gain, we think about loss of just the things you enjoy doing in life, loss of independence. Then in addition to all of those immediate issues, surgery, infection, risk, et cetera, a lot of times those things can culminate in increased morbidity and mortality. It’s the mortality piece. For example, within the first year of a hip fracture, there’s up to a 30% risk of death for patients, which is rivaling stroke data and heart attack data. We have to take these fractures very seriously because it’s not just an inconvenience; it can be something that leads to someone’s death at the end of the day. Unfortunately, a lot of our patients know people or have heard of people who’ve had a hip fracture, and then within the year, they’re no longer with us.
Again, thinking about osteoporosis and bone disease in the same serious way that we think about heart attacks and strokes is very important; we need to get the word out that this is something we should be asking about, screening for, and treating if we identify these fragility fractures.
RK: Thank you for going over the “why do we care?” There are lots of reasons to care, and I know you and I have both seen, unfortunately, the devastating consequences after a hip fracture, a spine fracture. There can be a downward spiral, especially if you have other medical conditions or aren’t able to bounce back as fast. It is a long road for some people to rehabilitate and get back to their baseline if they’re able to, which is all the more reason to prevent these from happening in the first place.
Really what we’re talking about here today includes quite a few risk factors that can lead to bone disease. I wonder, specific to diabetes, you’ve done a lot of research in this area too, but what about blood sugar levels and management of diabetes? How does that impact bone health? You mentioned bone quality before, so perhaps you can talk a little bit about that. What do we know about the role of glycemic management in protecting our bones?
KM: That is a great question because it’s that next step in how we think about bone because I said at the outset, we’re missing something. The fact that the bones look pretty darn good on DEXA scan, the amount of bone that we see on DEXA scan, is falsely reassuring. So, we feel good about the scan, but patients are still going out and breaking bones. That’s bone quantity. That’s how much bone you have. It’s that fancy x-ray that says you’ve got X amount of bone, and it looks sufficient.
The second step that we have to think about is bone quality. So not just how much bone you have, but how good is that bone? I use this comparator all the time; a lot of us have heard the story of The Three Little Pigs, and you have one pig, and he’s got a ton of straw. It’s a whole ton, but it’s straw, and then you have another pig who’s got a ton of brick. Both have tons of material, a ton of straw, and a ton of brick. They both build a house, but when the wolf comes along, which one do you want to live in? You want to live in the brick house. That’s quality, right? Is it straw or is it stone? What we are speculating in the field, and there’s been a lot more research going into it, is why might diabetic bones or people with diabetes in their bones—why might they be more like straw? Quantity looks pretty good, but not so great quality as opposed to stone.
What has happened? What are some of the factors contributing to that? This idea of bone quality has, depending on who you talk to, a million different definitions. There are different things we think about, so we think about how the bone is laid out. The architecture, or the microarchitecture, of the bone, the strut work, you peel back the drywall—what do the walls look like behind the scenes? Is it different in diabetes compared to those without diabetes? The answer is “yes.” There are differences in microarchitecture; there are differences in how the hip bones are laid out, something called geometry. It’s if you think about it in architectural terms, and now in engineering terms, the geometry of the bone is different; there’s a point parameter that we look at; oftentimes it’s how actively the bone is remodeling. Our bones are always building up and breaking down. They are not like rocks that we’re walking around in; our bones have to renew and refresh themselves, like our skin. If we didn’t shed the old skin and put in new skin, we’d look pretty gnarly. Bones are always remodeling. Is that recycling process and bone different in those with diabetes compared to those without? The answer is yes, diabetes impacts how actively and well bones rebuild and refresh themselves to keep them flexible. It’s a lower rate of remodeling, so bone gets old and brittle as time goes on.
When we really look deep down inside the bone—even beyond that microarchitecture I just talked about, peeling back the drywall and looking behind the walls, really looking at the composition of the bone—that collagen, that mineral we talked about, is there something different about it that’s disturbed with diabetes? The answer there too is yes. When looking at mineral content and looking at collagen formation, there are differences there in diabetes. In part, a lot of this may be due to advanced glycation end products (AGE) deposition. We’re measuring it every time we get that hemoglobin A1C; these circulating AGEs. They actually do get deposited into the bone, and they can cause disruptions in or problems with how the bone is laid out, how flexible the collagen is, and how well the mineral is deposited within the collagen to harden. Those AGEs play a role in how strong bones are. That quality piece again, just like the beginning, there’s a million different reasons why people with diabetes may not have perfect bones. There are quite a few reasons we’re investigating actively as to why the quality of the bone might not be so great.
How does all of that translate into what we do about this? If we suspect that with longstanding disease, or as you have diabetes longer and longer, you have more problems with bone geometry. You have more problems with bone microarchitecture. You have more problems with bone remodeling. You have more problems with bone minerals, more problems with AGE accumulation, or deposits within the bone. You can imagine that the less severe your diabetes, the better glucose control you have, the fewer AGEs you have circulating, and the lower your hemoglobin A1C (or getting it down), the less damage can occur over time. Osteoporosis is not an overnight phenomenon. It happens over many years. So if you can slow that weakening of the bone with better glycemic control, keeping control of your blood sugars, keeping a healthy active lifestyle, exercising, good nutrition, and calcium and vitamin D, you can see that at the end of the road, it’s only going to be beneficial to the skeleton.
RK: I really like that analogy of The Three Little Pigs and the straw. When I think of a bushel of straw or a straw hut, you can imagine how easily it would fall compared to a ton of stone with a building or house, which would be more solid. I think that’s a great way to think about the fact that even though there’s a lot of building material, the building material has to be strong itself. You mentioned those AGEs, which are really just the circulating glucose sticking to proteins and sticking to areas in the body where it shouldn’t. It sounds like the higher the glucose, the longer you’ve had diabetes, the more likely it is that higher glucose in the blood can stick to places where it shouldn’t, such as the bone, and make it weaker. Underscoring again the importance of keeping those glucose levels at target, so that’s really good to know.
You talked a little bit about the symptoms and signs of osteoporosis. I wonder if we could move now to talking about how people might know if they are having bone disease or a fracture. Then maybe talking a little bit about some of the treatments that we commonly recommend for people who have bone diseases.
KM: Osteoporosis is a really tricky one, Dr. Kalyani, because, again, like plaque building up in your arteries or brain issues, this is a silent disease. A lot of times patients will come in and they think that I’m going to be treating them for their knee pain or their shoulder pain or their back pain. I say, “Oh my gosh, I’m sorry you’re having pain, but that’s probably not osteoporosis because osteoporosis is generally silent with all of these changes happening underneath the surface of the bone until that fracture occurs.” Then if there’s a broken bone, you’re going to feel that, although not all the time; 50% of vertebral fractures or spine fractures, we don’t even know about until we get an image. There may have been an episode of some back pain a couple of months ago, and you don’t know about it until you get a CT scan later, and there it is. So, osteoporosis in and of itself tends to be a silent disease.
Now sometimes we can develop thinning of the bone in diabetes and other conditions as well due to nutritional abnormalities. If you are not getting enough calcium, if you are not getting enough vitamin D, or if you have protein abnormalities or malnutrition in general, you can have side effects due to that. You can have softening of the bone and bone pain, particularly in your lower legs or in your upper legs. If you press on the surface of your bone, if it truly is soft, sometimes that is painful. I always press on the fronts of people’s shins as a part of my physical exam. Some patients will actually jump, and sure enough, we’ll get a vitamin D level or check their calcium levels, and those levels are elevated. That could be something that pops up every now and again with bone pain. I would say other symptoms of osteoporosis outside of a fracture are pretty limited. Sometimes patients have a risk for kidney stones that can thin the bones. If you’re having back pain or blood in your urine, we look for kidney stones, but on the whole, it’s tough. It’s a very silent disease, so they don’t come into my office again until oftentimes a fracture has already occurred.
RK: As you mentioned, it can be a silent disease. It sounds like more often than not, people might not have symptoms; is that right? And people really need to be screened.
KM: Yes, and that’s the critical piece: screening. I’m thrilled that the American Diabetes Association is partnering with our bone groups to really work on incorporating bone health into the guidelines. It’s a thick guideline, but we have more than a word or two; we have this whole section now on bone disease and diabetes to try to raise awareness that this is part of the screening, much like you would think about cardiovascular health or ophthalmologic evaluations, getting your feet checked, your eyes checked, et cetera. You at least have to do a baseline bone density test and ask about fractures in that screening process because it is so asymptomatic.
RK: Do you think most people with type 2 diabetes should have a bone density or DEXA test at some point, and if so, when might you recommend it?
KM: Yes, that’s a great question, and the answer is yes. It is definitely a risk factor; diabetes is a risk factor for bone disease. Whereas without any risk factors, it’s generally recommended that women older than the age of 65 get a DEXA scan, men generally older than the age of 70 or so. With any one risk factor for bone disease or fracture, diabetes again being one of those, we generally are screening women around the time of perimenopause, when we’re otherwise losing a lot of bone due to estrogen declines. Even men around the same age should at least have a screening bone mineral density test to know where the numbers are starting. Even earlier than that, if there’s a fracture, that would prompt you to get the scan sooner, if there’s a fragility fracture. Again, if we include diabetes now in the list, like we would rheumatoid arthritis or steroid use or family history of a hip fracture, we should be screening earlier than those 65 years of age for women and 70 years of age for men, it should be part of your initial assessment.
RK: One of the questions that I feel comes up sometimes, in clinical practice, is having a family member who’s had a fracture and how that might increase someone’s risk of having a fracture. I wonder if you could talk a little bit about that too.
KM: That’s a good question, and in that FRAX calculator we were discussing earlier, it is included as one of the check boxes that you can select. Genetics are a huge component of bone health. Maybe 40% of our predetermined bone mineral density that we get again by the age of 30 is really a part of our genes. So if you have a family history of osteoporosis or a family history of fracture, maybe you didn’t get to your peak bone mineral density by the age of 30. Maybe instead of getting to the 10th floor, you only made it to the 7th floor. That is something that should be discussed, in addition to other risk factors. It’s not just diabetes—”Are you on steroids? Do you have a history of kidney stones or a family history of fractures?” These are all things that go into that melting pot of fracture risk assessment that ideally your primary care doctor is getting. But, when I hear a family history of fractures, particularly hip fractures, or a lot of patients will describe, “Mom just got shorter and shorter as she got older,” or “Dad got shorter and shorter as he got older,” or “They got that hook in their back.” When I hear things like that, it really does make me wonder if maybe this person is at even more increased risk than I initially thought.
RK: Do some relatives confer higher risk? For instance, I know we often talk about maternal or having a history of fracture with your mother as something that we think about as a risk factor. But is there any relative who’s had a fracture that confers higher risk, or do certain relatives make it more likely that you will?
KM: Yeah, it’s mom and dad; they’re first-degree relatives. This is one disease state where I feel like we do neglect men to some extent. We don’t think about men as getting osteoporosis, but they absolutely do. So, either parent, if there’s a history of fracture or, again, getting shorter with age or multiple fractures that are, again, fragile, not car accident-related, that should be considered. Then I always ask actually about brothers and sisters too, because sometimes we don’t know our parents’ history for whatever reason. Maybe there’s adoption, or maybe there was an early passing of a parent, or they just didn’t make it to the point in age where they may have had a fracture. But if I get a history of a brother or a sister who’s had multiple fragility fractures, I take that into consideration as well. So it’s any first-degree relative, although in the FRAX calculator it asks very specifically about parental history of hip fracture.
RK: That’s really good to know and important to know the family history to know whether any of your first-degree relatives, parents, or siblings have fractures. Now, for those people who are listening and are interested in how they can prevent having bone disease, such as osteoporosis, and having fractures in the future—what are some lifestyle modifications or lifestyle measures they can take to optimize their bone health and really ensure that they have strong bones for their lifetime?
KM: As the first visit in my clinic comes to a close, it always comes out, “Hey, what’s next? What do we do?” I always lead with what you, as a patient, can do to improve your bones. I can pull out my prescription pad until the cows come home, but it really is a partnership because it’s not just about medication. It’s about all of these other factors we’ve gotten into today.
Starting with a healthy lifestyle. I know that’s a term that’s very broad, but it is critical. These are things like exercise; we know the benefits of exercise to blood glucose control. Guess what? Exercise is really good for your bones too. We say resistance training, and that doesn’t mean you need to go out and you need to get a gym membership and pump iron 8 hours a day. Resistance training can be. A 30-minute walk around the block on a nice day, and finally the weather is getting a little bit nicer so we can get outside a bit more. A nice walk around the block, exercise bicycles are great. Even elliptical trainers are great. Using the arms, there is so much free content now on the computer that you can get access to; you can go in, and you can use your search engine to look into osteoporosis or bone-building exercises, and you don’t need a fancy gym membership. You maybe just need a couple of heavy cans at home that can give you the exercises you need. This includes even exercises for people who have functional limitations.
You can do things sitting from a chair; you can do things just with your legs, and you have to do things within your boundaries. But we generally recommend 3 to 5 days (a week) of 30-minute sessions of resistance training in some form. The only thing that really doesn’t count is swimming. It’s still good for your heart and other things, but swimming may not be as good for the bones because it doesn’t provide that muscle against bone that we need to build healthy bone. Exercise is very important. In that same breath, it’s interesting because for blood glucose control and really to optimize your blood sugars, make them the best that they can be. Weight loss is generally recommended in patients; if weight is contributing to glucose control, I always like to counter that with healthful weight loss.
In my world, if you lose too much weight too fast, you can also lose bone with that because really fast weight loss makes us lose lean mass. Again, Dr. Kalyani, you know all about this too, but when you lose a lot of lean mass or muscle mass really quickly, you can lose bone. We do have a special eye on individuals who undergo gastric sleeve procedures or Roux-en-Y gastric bypass (RYGB) procedures. Just to make sure they’re not losing bone, and unfortunately through studies, we know that they do. Prioritize healthful weight loss through exercise and healthful diets.
What can we do in our diets to really improve our bone health? Getting ample protein, you got to start there. Remember I said bones are made of collagen. Guess what? – Collagen is protein. So, you’re depriving yourself of collagen; protein does not have to be meat. It can be plant-based as well. Intake adequate protein for someone of your height and your weight. As well as adequate calcium intake. Generally, for individuals at risk for osteoporosis, fracture, or bone loss, we recommend about 1200 milligrams of calcium total per day. Ideally, you get it through your diet. I think the cardiologist would prefer that. I know our heart specialists, our kidney specialists, would prefer that, but it is not always possible to get it through the diet. Sometimes patients are lactose intolerant, or they just don’t like cheese, but there’s plenty of other non-dairy sources out there, too, like fortified non-dairy milks, for example, where you can get calcium. Every once in a while, and certainly in my practice, you must oftentimes turn to a supplement, and there are calcium supplements out there that are well tolerated. But again, that 1200 milligram-a-day goal would be what you would strive for. Along with adequate vitamin D levels. The endocrine society would recommend a vitamin D level greater than about 30 nanograms per milliliter for patients at risk for fracture, which again, patients with diabetes are at risk. So, getting enough vitamin D, and that can range all across the board, Dr. Kalyani, and I’m sure you’ve seen it too. Some patients need 2,000 a day, some patients need 5,000 a day and some patients need prescription strength. So really that would be something to work on with your provider to decide exactly how much you need to meet that 30 nanograms per milliliter threshold.
As far as other things with lifestyle, guess what? I’m going to be yet another doctor telling you, please don’t smoke; please don’t drink too much; please do try to avoid toxins that might otherwise harm the rest of your body too. Then don’t neglect those other areas of your health. We said kidneys can affect the bone and vascular damage can affect the bone. This is—I know it’s annoying—I’m adding one more thing to think about, right? With all of the other pieces of this complicated disease state puzzle, I’m adding one more and saying we have to think about your bones. But guess what? In treating all those other things, hopefully you’ve been doing as best you can. You’re ultimately going to do good by the bone as well. Managing your blood pressure, managing your cholesterol, and taking good care of your kidneys—all of those things, at the end of the day, will trickle down and have a good impact on bone health too.
RK: I think it’s great to hear about a variety of ways that people can choose—whether it’s through exercise, which they should definitely exercise, or also through different types of foods and maintaining adequate intake of protein and calcium and vitamin D—to keep their bones strong. With the addition then of not drinking and not smoking.
What about the consumption of sodas or the consumption of sugar-sweetened beverages? How do they, or do they, affect the bones in any way?
KM: They’re not the best, right? I think sugar. It tastes good. I love a good gummy bear every now and again. But, no, it’s not good for bone health.
It’s not just carbonation. There is a lot of information out there about carbonation and its impact on bone health, which is not the best data. I find that the problem with sugary sodas, and sugary drinks in general, is they tend to replace more healthy choices. Instead of having a glass of almond milk, if you reach for a sugary beverage instead, you’re depriving yourself of the nutrition that might otherwise come from that glass of almond milk.
Then again, getting back into this discussion of those high blood sugars and then what that does with these advanced glycation end products (AGEs) that then go and accumulate in the bone, causing increased fat production within the body, and that is bad for bone health.
There are a lot of downstream effects of all of that sugar too, which have immediate and long-term effects on bone health and bone strength. I know it tastes good, and no one is saying never, but at the end of the day, the less you drink sugary drinks, or carbonated beverages with lots of sugar in them, probably the better off you’ll be. This is not only from the diabetes standpoint, Dr. Kalyani, but certainly from the bone standpoint as well.
RK: Yeah, it definitely can have wide-ranging benefits to moderate or reduce sugar-sweetened beverage consumption. I think the point that you made about weight loss is really important because we do often, knowing that obesity is a risk factor for type 2 diabetes, talk about weight loss with many of our patients with diabetes. As you mentioned, it can have potentially adverse effects in both the muscle and the bone. Knowing that ahead of time is important to counteract potential adverse effects by doing exercise, by ensuring that nutrients are in the diet to protect the bone as well. The post-bariatric bypass population, or those who undergo weight loss surgery, certainly are at the highest risk, wouldn’t you say, of those bone deficiencies?
KM: They are, and we have the data to show that not just with DEXA but also using some more sophisticated imaging techniques. I think what we’re all struggling with is, beyond the immediate weight and bone loss, the long-term benefit of those surgeries: Does it still outweigh the skeletal question marks that we have, and can your bones regain strength over time?
We don’t know the answers to that. I think, again, it’s why that nutritional counseling piece, not only prior to the surgeries but also ongoing nutritional support following the surgery, is very important. So that the vitamin D levels don’t drop and there’s adequate calcium intake. We know there’s malabsorption with a lot of these surgeries where the body just doesn’t absorb nutrients as well as it should, either because the stomach is a fraction of its original size or because the intestines have been rerouted and you’re not supposed to absorb things any longer, but really continuing to partner with someone educated in nutrition to prevent some of that inevitable bone loss that will occur.
One thing I do want to circle back to, because I’ll kick myself later if I don’t bring it up, is another reason that exercise and maintenance of muscle mass are so important: so that we prevent falls. I have spent so much time, probably more recently than ever, feeling like I’m surrounded by people who fall. My father is a “faller”; my mother-in-law was a “faller.” So, I’m always thinking about these things. My father has had type 2 diabetes for over 20 years now, and so he’s got a whole host of complications with neuropathy and vascular issues. He now falls, and I worry every day about him taking a tumble. You better believe I’m all over him about doing his physical therapy and eating his protein and continuing to strengthen his muscles so that he doesn’t topple and so that his bones aren’t challenged. People fall, and they don’t always break bones, but I say, “Listen, stop testing your bones. Let’s just not fall to begin with.” So not only exercise, but glucose control to the point where your blood sugars are well controlled, but not too low either. We know we fall when we get woozy, and certainly my dad has had a couple of those episodes too. Avoiding the low blood sugars too, because that can get patients into trouble as well.
RK: Thank you for sharing that. The scenario you described with your father, unfortunately, I think is more common than we realize, and he, of course, benefits from your expertise in this area, but the link between falls and fractures can’t be underscored and then you add diabetes to that. It’s almost like a triple threat. Perhaps those who do fall or feel unsteady on their feet should think a little bit more about protecting their bone health. Wouldn’t you say, because of that risk?
KM: Absolutely. Not to terrify people, I don’t want people to feel like they’re Humpty Dumpty out there. We don’t want to wrap anyone in bubble wrap before they go outdoors, but just to be mindful of it. Frankly, if it motivates you to take that extra walk around the block or to go to that physical therapy session that your provider’s been recommending out of concern that maybe you are a fall risk—if that’s the motivator that you need—then by all means, take this talk that we’ve had today and use it as yet one more reason why you should be exercising.
RK: I fully agree. I can’t underscore the importance of prevention. We focused a lot today on talking about the prevention of bone disease and how to diagnose bone disease. I don’t think we need to go into large detail about the treatments that are available, but I wonder if you could just say a few words about how good the treatments are that are out there and what people should do if they’re interested in getting diagnosed or identified for this and potentially getting treated.
KM: Yes, absolutely. This is where the prescription pad comes into play beyond lifestyle and diet and exercise and what have you. Sometimes we must pull out our prescription pad; if there’s been a broken bone and we’re worried about future broken bones, we’re going to be more inclined to do that. Or if the numbers don’t look so great on the DEXA scan, or if there are so many risk factors we worry about, we’re waiting too long before we prescribe a medicine. You’re right, Dr. Kalyani; there’s a whole buffet line now of osteoporosis medications that we use, ranging from pills that patients can take once a week or once a month. There are infusions, where you get an IV and you get a treatment once a year, which can be pretty convenient for patients. There’s injection therapy that’s given twice a year and even bone-building medications. In some patients, a lot of the pills and infusions and injections really prevent the bones from breaking down, and they’re our go-to medications in a lot of situations. But if we’re really worried about patients and patients, maybe there have been multiple fractures, or their numbers may actually be low, or there are other things at play. We may turn towards a category of medicines that really build the bones back up again. That part of the decision-making process is highly individualized. It involves looking at a lot of different factors, ranging from other diseases that may be on the list to other medications to patient preference.
I find that the most important thing is that I can recommend daily injections. One of the bone-building medicines is a daily injection, but you may be tired of daily injections, or maybe you’re not on insulin, and you have no intention of starting daily injections if you don’t have to. That’s where the partnership comes into play and talking about shared goals, because medicines are only successful if you actually take them. So again, that part of it does come to pass sometimes if there’s been a broken bone or progression of osteoporosis, and they all work.
We’ve had some studies looking at the effectiveness of these different types of osteoporosis drugs in individuals with type 2 diabetes, and we know they do work to prevent fractures. So, beyond that, it’s just a matter of coming up with the right drug or drugs, and if they don’t work, sometimes we must pivot and try something else. There are lots of options out there, again, in addition to the calcium, the D, and the lifestyle interventions, because it’s always a teamwork approach to really optimizing and improving bone health and strength.
RK: Dr. Moseley, this has been such an informative discussion. I know I’ve learned a lot, and I’m sure our listeners have learned a lot, too, about the higher risk of bone diseases in people with type 2 diabetes, some of the challenges of diagnosing bone diseases using some of the routine measures, such as the dexamethasone and bone test, and really the importance of screening for risk factors, including family history and other lifestyle factors and other medical conditions that might raise someone’s risk of having bone disease, and then knowing that if medication is needed, it’s reassuring to know that they are effective often in preventing a fracture.
I wonder in parting if you have any last words for our listeners who, after hearing this discussion, are empowered to really try and do their best to preserve their bone health. What would you recommend that they do as next steps?
KM: This, just listening to this podcast and learning about this, is the most important step. As I have stated, part of what I like to do most is get the message out there that this is something we should be thinking about: bones, bone strength fractures in people with type 2 diabetes, that it is a more recently recognized complication of diabetes that sits on that list with eyes and feet and heart and kidneys.
Bones are now on that list too. By understanding that we have to now consider bones as patients, we can go to our providers and say, “Should we maybe talk about my bone health? Should we maybe screen me for my bone density to see if there’s anything that we need to maybe intervene upon?” I think that that’s very important.
Educating patients so they can maybe go and educate their providers a little bit more. And I think it’s again, one more reason, in understanding the importance of bone health and its association with type 2 diabetes. It’s one more thing to motivate patients to do all of those elements that really are critical for improving blood glucose levels or blood sugar levels: the diet, the exercise, and healthy lifestyle choices. We’re all working towards the same goal. Luckily, there’s so much overlap with what patients can do to improve their health with bones, heart, kidneys, and overall wellness. I think that, very luckily, it’s just one more motivator for them to make the right choices in life.
RK: Dr. Moseley, thank you so much again for your time today and sharing your expertise. We truly appreciate it.
KM: Thank you so much, Dr. Kalyani.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org.
We love to hear from our listeners. The email address is [email protected].
Thanks for listening. Be well and see you next time.
In Episode 42, Dr. Kalyani welcomes Dr. Andrew Demidowich. Chief of Inpatient Endocrinology at Johns Hopkins Howard County Medical Center and an Associate Professor of Clinical Medicine at the Johns Hopkins University School of Medicine. He completed his residency training at the Mount Sinai School of Medicine in New York City and his fellowship at the National Institutes of Health in Bethesda, MD. Dr. Demidowich has published over 50 peer-reviewed articles, and his research interests include elucidating the relationship between obesity, inflammation, and diabetes, as well as strategies to improve diabetes care delivery in the inpatient setting.
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani at Johns Hopkins. We developed this podcast as a companion to our patient guide to diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org. For today’s podcast, it is my pleasure to introduce Dr. Demidowich, who will be speaking to us about hospital management of diabetes. Dr. Andrew Demidowich is the chief of inpatient endocrinology at Johns Hopkins Howard County Medical Center and an associate professor of clinical medicine at the Johns Hopkins University School of Medicine.
He completed his residency training at the Mount Sinai School of Medicine in New York City and his fellowship at the National Institutes of Health in Bethesda, Maryland. Dr. Demidowich has published over 50 peer reviewed articles, and his research interests include elucidating the relationship between obesity, inflammation, and diabetes, as well as strategies to improve diabetes care delivery in the inpatient or hospital setting.
Welcome Dr. Demidowich.
Dr. Andrew Demidowich, MD: Thank you for having me. It’s an honor to be here.
RK: We are so excited to learn from you today about how diabetes is managed in the hospital and how it might be different than how people manage their diabetes at home. I wonder if you might start off by telling us: why would someone with diabetes need to be admitted to the hospital in the first place?
AD: People might need to go to the hospital either for diabetes-related issues such as very high blood sugar or very low blood sugar—we call those diabetic emergencies. Very high blood sugars can sometimes lead to diabetic ketoacidosis, which is when the body is no longer able to utilize glucose or sugar from our blood to use as fuel or energy for our body.
It then has to go to our backup generator—fat—which we carry around every day, sometimes too much, unfortunately. Our body starts breaking down that fat as a backup energy supply to feed the organs of our body. But when you break down fat, it turns into fatty acids. It eventually acidifies the blood and becomes a potentially life-threatening condition, which requires hospitalization and urgent treatment.
Also, people with diabetes might need to be hospitalized for completely different reasons, such as anything else that other people without diabetes might be hospitalized with: heart attacks, strokes, pneumonias, kidney issues, infections, the whole gamut. Diabetes might be a secondary issue to the cause of their hospitalization, but it is still very important to be managed correctly once they are in the hospital.
RK: It does sound like there could be many reasons why someone with diabetes might need either a short or a long term stay in the hospital. You mentioned what we call diabetic emergencies, such as diabetic ketoacidosis hypoglycemia, even hyperosmolar hyperglycemic crisis. We had a previous podcast talking about those issues in detail, I appreciate you bringing those up.
You also mentioned the other common reasons people get admitted into the hospital that might also occur in someone with diabetes. Are any of those types of admissions, you mentioned pneumonia, for instance, more commonly seen in people with diabetes?
AD: Yes, exactly, the higher your blood sugar is, the more complications you can develop for several reasons. Not only is sugar fuel for our own bodies, but it’s also fuel for bacteria, viruses, fungi, and things that really shouldn’t be living on or inside of us. By having higher blood sugar levels at home, you are at increased risk of developing some kind of infection, such as pneumonia or urinary tract infection or something to that effect.
We also know that sugar is sticky. On the outside, I say to my patients, “Honey is sticky, bubble gum is sticky, caramel is sticky, but indeed, inside our bloodstream, sugar is also sticky.” Now, the medical term for it is called glycosylation, where the sugar molecules actually stick to things inside our body, like our blood vessel walls or our immune cells. By having those immune cells coated with sugar, they’re unable to actually defend our body as much, but this also causes increased levels of inflammation, particularly in our blood vessels.
People with uncontrolled or poorly controlled diabetes are at increased risk of other medical issues such as heart attacks, strokes and nerve damage, which could then lead to issues with vision or falls and unfortunately then therefore leading to fractures.
That is why both in the inpatient and in the outpatient space, the clinicians focus so much on good diabetes control, because just having diabetes per se doesn’t increase your risk for many of these things. It is more dependent on whether or not the patient’s diabetes is poorly controlled, in which case the risk truly elevates. But for people who have really well-controlled diabetes, I always tell my patients, “You can live a long, healthy life just the same as the person next to you.”
RK: I agree. I think it is so important to emphasize that following routine preventative care measures and really striving towards whatever metabolic goals are discussed with you and your health care provider on the clinic side can really prevent some of these complications from occurring, including hospitalization.
You mentioned the terms inpatient and outpatient; could you define those for our audience? They are used very commonly but may not be so well defined.
AD: Unfortunately, as clinicians, we tend to fall into medical jargon, and we don’t even realize that we use it. I do recommend to all my patients, “If there’s anything that you don’t understand while I’m telling you in our face-to-face interactions, please do not hesitate to stop and interrupt me and ask me. There’s no such thing as a stupid question.” But yes, to your point, inpatient typically means in the hospital setting. Whereas outpatient really means out of the hospital setting, it really means in the clinic when you’re seeing your doctor for a regular checkup or appointment.
RK: There are also urgent care centers and emergency room settings. Where would you classify those?
AD: We would consider those as technically outpatient. So emergency care, urgent care settings, and even what we call the observation unit, insurance companies still define those as outpatient areas. Even though physically you may be inside the hospital. They have made a delineation that you’re not admitted to the inpatient setting, which supposes that you will need a higher level of care and more than one night in the hospital to help treat and resolve the acute medical issue that brought you to the hospital in the first place.
RK: That is an important distinction to keep in mind. If you go to the emergency room, you may be in a hospital, but really what we’re talking about today on the inpatient side is when the healthcare team thinks that you need to be formally admitted and perhaps actually have a bed where you stay for a day or longer because of the type of medications and other regimens that are required. What kind of specific regimens, in general, might someone require in the inpatient setting that they can’t get at home, for instance, getting an intravenous medication? Sometimes that can be given in the ER as well. Why would someone need to be in the hospital to get these treatments?
AD: Typically, once patients are admitted in the inpatient setting in the hospital, we manage diabetes almost exclusively using insulin. Whereas in the outpatient or out-of-the-hospital setting, people frequently are on all sorts of other medications, like pills, such as metformin or glipizide, or the new injectables like semaglutide (Ozempic) or tirzepatide (Manjaro) that we’ve been hearing a lot about. The issue with those medications is that many of them are really wonderful medications, but of course they have potential side effects or nuances of whether or not they’re safe to use if someone has acute kidney or stomach issues.
Insulin is a natural hormone that our body produces and is therefore the best, most well-studied, and most predictable in terms of its action. We know it plays well in the sandbox, no matter what other medication that another doctor might want to give you or any other procedure that you might need to undergo. I do not have to worry when I use insulin about whether or not someone’s going to go for imaging, a CAT scan with IV contrast. Are they going to go to surgery? Are their kidneys not working? Or is their liver having difficulty working? In any of those situations, insulin is safe to use, whereas other oral medications might become unsafe. In order to ensure the safety of our patients, sometimes we’d like to just keep it simple and just switch everybody to insulin.
RK: That’s such an important point to emphasize. I often hear from my patients, and I’m sure you do too, “Why do my medications have to change? Just because I’m in the hospital for a day or two?” Emphasizing this unpredictability of what can happen when you have an acute issue going on, even if it’s not directly related to diabetes, is important because the regimen itself needs to be flexible enough to accommodate having to be without food overnight, for instance, before a procedure, or if there are changes in the kidney and liver function. Like you mentioned, many of these medications, particularly the pills, may be metabolized.
I think understanding that the predictability, or unpredictability, of being in the hospital setting is really what necessitates these changes. But it can be confusing for patients who are well managed at home; maybe they get a bad infection that requires hospitalization, and then suddenly, after years and years of being on their medications, they have it flipped to insulin. What do you see in the hospital setting when patients come in and are asked to put on insulin?
AD: The most important thing is having discussions with patients and setting expectations and answering questions. Typically, once they have a conversation, exactly like we’re having, almost all patients are understanding and agreeable. There’s a common misconception amongst patients that if you start on insulin, you are doomed to be on insulin for the rest of your life. There are some patients that are very hesitant to be started on insulin, even just temporarily in the hospital setting, because they think that, “Oh, if I started insulin, that means I have to go home on insulin. I can no longer be on my pills, which I do really well on, ever again.” That is a complete misconception. People who are on insulin in the hospital oftentimes are able to restart their home medications on discharge. It is during that brief stay at the hospital that we want to keep you as safe as possible, so we usually just use insulin just during that time frame.
RK: Thank you for making that point. I think that’s a great way to describe it: a temporary change to the regimen that may or may not persist after you go home, depending on the reason for why you were admitted to the hospital in the first place. Part of the reason we’re having this discussion today is because that new setting of being in the hospital does require some changes for almost everyone who has diabetes, regardless of the regimen they’re on. Wouldn’t you say that’s true?
AD: Yes, not only that, but the hospital setting is an opportunity to reassess how everything is going at home. For people who come in and their A1C is at target, which is roughly around an A1C of 7%. We say roughly depending on the person and their comorbidities. There are opportunities to reassess. Some people come in only on pills, but their A1C is 11 or 12%, and you have that conversation of, “Maybe we do need to start some insulin when you go home.” Or at the very least, “Let’s look at what your current regimen is and how we can improve it.”
Some people come in with hypoglycemia, meaning that their blood sugar is low either due to insulin or due to another class of oral pills called sulfonylureas. We might then have the discussion of, “Hey, maybe this is not the best type of medication for you. Once you leave, we can put you on a different class that does not cause hypoglycemia, such as Ozempic, Manjaro, or Metformin.” Of course, that is the thing that I enjoy so much about diabetes management: there’s so much nuance, and it is a little complicated, but at the end of the day, I also really enjoy having these conversations with my patients. Ultimately, they are the ones who will live with this for the rest of their lives. I really find that shared decision-making is very important to come up with a strategy that allows them to set themselves up for success and understand how they define success.
RK: I think that’s a great way to describe it, as an opportunity for a tune-up for people who may, for whatever reason, not have had their regimen optimized. It presents an opportunity to focus on what the tweaks are that we can make to get you on a regimen that will eventually help you reach the metabolic goals set by your provider, even when you go home. I think, for a subset of people with diabetes, a hospital admission can be a great opportunity to improve their care. In your experience, having really managed many people with diabetes in the hospital, how many of them go home on the same regimen they came in with to really have a change in the regimen on discharge?
AD: I would say it is 50/50, which means that there are still quite a large number of people where there is an opportunity to adjust or improve their regimen. Maybe that’s just adjusting their insulin doses, or it might be an opportunity to have the conversation of, “Hey, have you ever discussed with your provider about starting Ozempic or Manjaro?” The patients might not have an outpatient endocrinologist; on the outside, they maybe only have a primary care doctor who possibly is not as well versed or as comfortable prescribing such medications. So it is an opportunity to have shared decision-making and identify strategies to set people up for success.
Then the other thing that I find really exciting in terms of my position as an inpatient or hospital endocrinologist, sometimes we call it an endocrine hospitalist, is to also have a conversation about checking blood sugars. Of course, classically, we use finger sticks, which are painful for some people. They also only give us a brief snapshot of what their blood sugar is doing at that point in time without giving us more robust information about what’s going on in between those finger sticks. Continuous glucose monitors (CGMs) have now become much more popular and are much more visible amongst our population of people with diabetes. So, I’ve become a very strong advocate of starting people on CGMs on discharge. Particularly for those who might be going home on insulin or who have a history of diabetes emergencies, whether it’s hypoglycemia or severe hyperglycemia. It helps people understand how their decisions, how their diet, may affect their sugar levels as well as how to set alarms to keep them out of trouble.
With all of these, whether it’s medications or discussing sugar monitoring, I feel like there is a wonderful opportunity. We frequently, in one of those two regards, do make some tweaks or changes to help optimize them for the rest of their life. Hopefully, unfortunately, it’s sad; I don’t have to see people again. But at the same time, I’m happy when I don’t have to see people again, because that means that they’re doing great.
RK: That’s right. As much as you enjoy seeing people in the hospital, it’s nice when they aren’t required to come back to the hospital. So that is interesting to hear, that about half of people with diabetes in your experience who come into the hospital, maybe were well managed on pills, and temporarily are put on insulin in the hospital, might go home on the same regimen of pills after discharge. But then the other half really might either need to stay on a new insulin regimen or might need some tweaks to their existing regimen on discharge. So again, highlighting the importance of reevaluating what the diabetes regimen is at home and what’s ideal once someone goes back home from the hospital.
You mentioned putting people on continuous glucose monitors when appropriate, and I do think that highlights another aspect of what occurs in the hospital, which is education. Could you talk about who does the diabetes education in the hospital and the role, not only of the nursing staff, but also when someone with diabetes requires a diabetes consultant or an endocrine consultant in the hospital?
AD: Great question. So, education can occur with many different staff members: it can be the bedside nurse; there could be a certified diabetes education care specialist, who I would call a diabetes educator; it could be the hospitalist; it could be the endocrine consultant, as you alluded to, Rita. Any of those people are able to provide diabetes education, and it of course depends on the hospital resources: Do they even have an inpatient endocrinologist or an endocrine hospitalist? Do they even have a diabetes educator on staff? It’s not universal for all hospitals. At the hospital where I work, which is the Johns Hopkins Howard County Medical Center, we are blessed to have a diabetes educator on staff. People who come in with either poorly controlled diabetes or having significant changes to their diabetes regimen, such as starting insulin on discharge or starting a continuous glucose monitor on discharge, we usually do have the diabetes educator come and consult on the patients, and frequently I or someone from my endocrine hospitalist team consults on those people.
I am such a firm believer in education because knowledge is power, and what we want to do is empower our patients to feel comfortable and confident that they can manage their diabetes on their own once they leave the hospital. If they are not comfortable in managing their diabetes, then I feel almost to some effect that we haven’t fully set them up for success.
To answer your second question, at what threshold does a patient with diabetes require an inpatient endocrine consultation? Meaning, at what point should an endocrine specialist come and see you while you’re in the hospital? Again, that does speak to the specific hospital resources that are there. Some rural settings might not have an endocrinologist, or the endocrinologist in town might not be able to make hospital calls because that physician is working in the clinic all day. But in hospitals, for example, large academic centers or hospitals that are employing an endocrine hospitalist or an inpatient diabetes team, we do set some soft thresholds. Now, these are not set guidelines or set in stone, but I would think that people who present with diabetes emergencies like diabetic ketoacidosis (DKA) or hyperglycemic hyperosmolar state or severe hypoglycemia should be seen by an endocrine specialist. Anybody with an insulin pump and most people with type 1 diabetes, since we know that they tend to have greater sensitivity and more fluctuation in their glucose levels and insulin requirements, would really benefit from having a specialist touch base with them. Pregnant women who have diabetes and are being managed with insulin should have a specialist touch base with them. People who otherwise might be coming in for a hospitalization that is directly related to uncontrolled diabetes, such as an A1C greater than 9 or 10%, and they’re coming in with either a foot infection, a heart attack, or a stroke, at which point you really want a specialist to help assess the individual and truly optimize their medication regimen. Not only, again, for what’s going on in the hospital, but more importantly, for when they leave, so that they don’t have a recurrence of their complication, so that you set them up for success and for health.
RK: Yes, those complicated cases sometimes can take some time to think through the regimen and to follow how people respond to the regimen in the hospital. Having a diabetes management service in the hospitals, where they’re offered, hopefully in an increasing number of hospitals—it is so great that the hospital where you work at can benefit from your expertise—is so important so that we can ensure that management of people with diabetes is ideal and to reduce potential complications as well.
We talked about education; what about diet? If you could talk a little bit about what kind of diet people with diabetes can expect when they’re admitted into the hospital and the role of nutritionists. When might they be consulted during a hospital stay?
AD: Nutrition is so important to our health in any setting, both at home as well as in the hospital. I tell my patients, “You truly, you are what you eat. Every cell, every muscle, every brain cell, skin, bone, is truly constructed of the food that you have put into your mouth, digested, and those building blocks literally become you. So that hamburger, or that salmon, or, that juice that you’re about to consume, that’s future you.” And, as I say, “If you want to have, build an excellent car, a Ferrari, or a beautiful mansion, the Roman Coliseum, you need excellent building blocks to achieve that. If you’re going to put bad quality parts into a car or into a building, you’re going to have a crummy car or a crummy building, that’s weak.”
So, the same truly goes for people, so in the hospital, typically people with diabetes are put on a diet that limits the amount of carbohydrates that they can eat. Now the name might vary from hospital; it might be called a diabetes diet, it might be called a carbohydrate-controlled diet, which is what we call it here at Johns Hopkins. It limits the amount of carbohydrates that someone can eat because a carbohydrate is effectively a type of sugar, and that will potentially raise someone’s glucose in their bloodstream. But also, sometimes people may have other diets included or restrictions depending on their disease. So, if they came in with heart failure, they might be put on a low-salt diet. Additionally, someone who has renal failure on dialysis might have additional restrictions, what we call a renal diet. So, it varies from person to person, but in general, most people with diabetes are put on a carbohydrate-controlled diet.
We find that it is important because even though people might have had conversations with other physicians saying, “Why don’t you just let them eat what they eat at home? Then you can find out what their insulin requirements are. Why are you putting them on a restrictive carb control diet in the hospital?” I respond to that with two reasons:
One, they’re in the hospital for a reason, and we want to set them up for success. We want to give them the best chance to fight the infection, to recover from a stroke or a heart attack, to have their kidneys recover, for example. So, I would be failing as a physician if I didn’t give them the best diet and nutritional status to help them achieve those goals.
Two, I really feel that the hospital is a beautiful opportunity for education and modeling of behavior. So, if we show them, I don’t admonish, I don’t finger wag, and I don’t shame, because that is not the way to educate people and to put them in the right headspace to retain and obtain information. Instead, I like to sit down and say, “What happened, happened, and what you’ve done at home, you’ve done at home. That’s okay. That’s how you grew up, or that’s how you’re educated, or those are just the decisions that you made. But we’re here, right here and now, and we have to look forward to the future rather than backward. So how can we set you up for success going forward in the future? And these are the dietary strategies that are going to afford you the best opportunity to get better, to clear that infection, to improve your A1C, or to improve your vascular disease.”
So that’s why, for me, I think it’s very important to give them those opportunities and to set them up to model the way that what an ideal diet should be and what better place to learn than in the hospital when you have staff that can also continue to reinforce that, like a diabetes educator, a bedside nurse, or the nutrition team. And to your point, when should a nutritionist come in and speak with an individual? I do feel strongly that, again, education is so important; knowledge is power. So oftentimes we do consult a nutritionist, or otherwise called a registered dietitian, which is the official term, to come and speak with a patient who has poorly controlled diabetes or may benefit from diabetes education. They may even have great, well-controlled diabetes, but as I interact with the individual, I might notice that they were never taught even basic dietary strategies or decision-making on how to eat healthy.
Going into a supermarket and trying to pick healthy food and cook healthy meals for someone who was never taught how to do that can be very overwhelming and scary. For me, all of us are different, but things that you’re not familiar with can be scary. If you ask me how to fix a car right now, I know how to change a tire, but that’s about it. Besides that, I would be truly terrified. We must not take for granted the things that we know and then impose them on our patients; they might not know it, and they might be afraid to even admit that they don’t know. It’s always important to have open conversations and then provide them with the resources necessary, both in the hospital setting as well as hopefully setting themselves up for resources to continue to follow up with once they leave the hospital.
RK: I agree, I think that registered dietitians, and diabetes educators, are such tremendous resources really for people with diabetes in the hospital. To have the opportunity to take advantage of that knowledge that they can provide, not only in the hospital, but to carry it over to when you go home is really critical. For those people who can really benefit from that additional expertise and knowledge, it can be critical to have them come by while in the hospital. You mentioned what we call the carbohydrate-controlled diet or a diet where we monitor a certain level of carbohydrates in each meal. There are also alternative nutritional regimens that I wondered if you could talk about just briefly, such as total parenteral nutrition, peripheral parenteral nutrition, maybe just briefly define what those are and when they might be used and how it might impact diabetes management.
AD: In situations where we feel that people are unable to eat food safely or in sufficient quantities that meet the needs of their body, and we know that typically people need roughly, depending on their body size, between 1500 to 2000 calories a day. For one reason or another, either if they’re intubated and unconscious or unable to swallow, if they’re unable to intake that sufficient number of calories to meet the needs of their body, then we have alternative methods to feed people. One method is called tube feeding, and that’s usually accomplished through a tube. Either people have what’s called a gastric tube or a peg tube, or they have just temporarily what we call a nasogastric tube, just the tube that’s in the nose and then goes down into the stomach but can be pulled out easily once they’re ready to actually eat food. Usually then they get almost the equivalent of a milkshake, which is continually poured through the tube to provide them nutrition, we call that tube feeding.
Then there’s peripheral parenteral nutrition (PPN), and total parenteral nutrition (TPN), which literally means food through the IV, through the vein. So we see that there’s usually, if it’s just PPN is typically a large, clear bag that has sugars and proteins in the form of amino acids and vitamins in them. Then sometimes we also have a bag of liquid fat because fat is very important as an energy source and as a building block for our bodies. Typically going through another IV into our veins because that’s continuous nutrition going in, non-stop, typically throughout the whole day, or even if it’s just going through 12 hours, for example. But it’s a continuous infusion rather than naturally What we do is we just have a meal and then we go hours without a meal and then we have another meal and then go hours without. That’s how our bodies are meant to be eating, and that’s how you evolved to be.
So to have continuous nutrition typically means a nuance and adjustment in terms of our insulin decision-making. Usually people are put on short-acting insulin every 4 hours to compensate for the continual glucose and energy that’s coming into their body through either the veins or through a continuous tube feed.
RK: Sometimes, especially for people who are on these different regimens, either through the tube feeds or through the veins, as you mentioned, just understanding that it might require a different type of insulin regimen. We haven’t really talked specifically about the kinds of insulin regimens that people may be on in the hospital, and this might be a good juncture to do that. We mentioned that most people, if not all people, will need, on a temporary basis, no matter what they were on before the hospitalization, to be on insulin during their stay. But what kinds of regimens might those look like? You mentioned if someone is on continuous nutrition, they are getting insulin injections every 4 hours, or what we call standing doses that they get. But for someone, let’s say that was on just metformin or just a few pills at home, what might their insulin regimen look like while in the hospital?
AD: Diabetes management in the hospital setting is very nuanced. For people who have, I would consider colloquially, very mild diabetes, so their diabetes is well controlled just on diet alone or maybe just on one pill alone, they might be able to get away with what we just call correctional insulin or sliding scale insulin and nothing else. Just see for 24 hours what their sugar levels are doing, and only if the blood sugar is starting to go high do you get a little dose of correctional insulin to help try to bring it back down to normal.
But for patients who are either taking insulin at home or who are taking multiple pills of diabetes medications at home or who come in and their diabetes is uncontrolled, meaning that their A1C typically is higher, above 9%, for example. Those people, we need to start them right off the bat on what we call basal-bolus insulin. And what does that mean? What is basal insulin? What is bolus insulin?
So, I like to use analogies because I think a picture is worth a thousand words. I like to use the analogy for my patients that our bodies are like a car. On a cold winter day, you don’t want to just jump into a cold car. Let me use my remote start, and I’ll start the car, but I’m not actually going to drive it, I’m going to let it sit there and just warm up. It’s going to be using the same amount, basal amount of gasoline. If I just let it sit in the parking lot for the whole 24 hours, it would continually use the same amount of gasoline, all day long just to maintain the very basic organ functions of the car. Similarly, our body is the same way; if we were just sleeping or resting or not doing anything all day long, we still need a basic amount of glucose to enter our cells as fuel to fuel our heart and our lungs and our kidneys and our liver.
So, you just need a basal amount of insulin to allow the glucose to actually go into the cells because insulin effectively acts as a key to open the door and allow the glucose molecules to go into the cells. Because you just need that same base amount, there’s actually what we call basal insulin. A common one used in the hospital is glargine. They’re typically once-a-day insulin; they just have a flat rate of action. It is just using the same amount of activity the whole 24 hours, and that’s why you’ll need to inject it once a day. It helps compensate just for basic metabolic needs while resting.
Then, on top of that, we have what’s called a bolus, or rapid-acting insulin. That is very fast acting, because the car, suddenly, you’re ready to go into drive, and you’re ready to start driving to work, or to the supermarket, or to your kid’s soccer game. The gasoline requirements, when you put it into drive, shoot up quickly until you hit a red light and then back to your basal. Similarly, in our bodies, when we eat food, the amount of glucose that’s now all of a sudden coursing through our bloodstream spikes up quickly. The insulin requirements to compensate for that glucose spike also need to spike up quickly, but they don’t need to stay spiked up for 12 or 24 hours because we metabolize the glucose that we’ve eaten rather quickly.
That’s why we eat breakfast at 8 am, and then I’m hungry again at 12 pm, just 4 hours later. Then usually around 3 or 4 pm, you need that mid-afternoon snack. Usually we eat dinner around 6 or 7 pm for most people. Around every 3 or 4 hours we finish metabolizing the nutrition from our food, and we’re ready to eat a new meal. For that reason, scientists have invented rapid-acting insulin that typically lasts only 3 or 4 hours to compensate for that rapid short glucose surge. In the hospital you would typically get one shot of basal insulin a day and then a shot of what we call bolus or rapid-acting insulin with each meal.
Then on top of that same rapid acting insulin, also you might get a couple extra units based on what we call, again, we’ve talked about this correction or sliding scale. Because if you had a hamburger and your blood sugar is 120 mg/dL, you might only need five units, the nutritional dose to compensate. Five units is just a pure example, it could be ten, could be fifteen, depending on the person. But you just need, let’s just say five units to compensate for the nutrition of the person. Hamburger buns that are going into your, eventually into your bloodstream. But if your blood sugar is 220 or 320 mg/dL, that’s much different at that point in time, that you’re eating that hamburger, than if you’re eating the hamburger at 120 mg/dL. So the person eating the hamburger at 320 mg/dL of course needs extra insulin or correctional insulin to help both compensate for the nutrition going in but as well as to correct them to bring them back down to 120 mg/dL hopefully by lunch or dinnertime.
RK: I loved that analogy about metabolism and why we need these different durations of insulin and different frequencies of insulin as well.
There’s also the insulin drip, giving insulin through the IV that some patients may need even further. I wonder if you could talk about what that is and why and when it might be needed.
AD: The insulin infusion, or the insulin drip, as we like to call it, is something that is typically done only in certain situations. A classic situation is diabetes emergencies, such as DKA or hyperosmolar hyperglycemic state. A lot of time people with diabetes or any type of hyperglycemia in the intensive care setting might be put on an insulin drip to help regulate their blood sugars. In these situations, the insulin infusion or the insulin drip is not only really, in some regards, more potent or more powerful than the injection because it goes straight into the bloodstream rather than the injections that go into the adipose tissue (the fat) and they need to be slowly absorbed from the fat into the bloodstream. It also allows us to make quick adjustments or stop the insulin entirely on a moment’s notice, whereas we’re not given that capability with an injection. Once you inject the basal insulin, that basal insulin is sitting there for 24 hours, whether you like it or not. Even the rapid-acting will be sitting there for 4 hours, whether we like it or not.
Whereas with an insulin infusion, you can change the dose—technically we can change it minute to minute—but most of the time we make adjustments every hour, as necessary, to help keep a blood sugar within the target range, which is typically between 100 and 180 mg/dL. Other instances where we might use an insulin infusion are after certain surgeries, such as cardiac transplant, pancreatectomy, or pancreas transplant, as well as with mothers who might have type one diabetes who are actively in labor. In all of these situations, for these specific and high-risk individuals, it affords us the best opportunity to have maximal glycemic control.
The question is, so then why don’t we do it on every person with diabetes? Because it’s very labor intensive, and typically the types of people that are on an insulin infusion need to be in a special monitored setting, such as an intensive care unit with typically one-to-one nursing, because the blood sugar can change rapidly when you’re on an insulin infusion.
RK: I think that is an important aspect to keep in mind, that the degree and frequency of insulin given and really the route by which it’s given, whether it’s an injection or an infusion through the veins, depend on what the medical reasons are for the admission and what the short- and long-term goals are. Understanding that someone can bounce back from being on an infusion to going into the injections, or maybe the other way, going from the injections to an infusion. This depends on whether their clinical condition is improving or worsening. It is great to have this flexibility, to be able to give insulin and meet the needs of the person in the hospital that might change throughout hospitalization too.
One of the hot topics that is out there is having to hold certain diabetes medications before procedures and before elective hospitalizations or when you know that you have to be hospitalized for whatever reason. Could you talk a little bit about that? What medications might require a little extra attention before a planned surgery? For instance, if you’re getting cataract surgery, would you have to hold medications such as GLP-1 receptor agonists or SGLT2 inhibitors beforehand, or even metformin? How far in advance do people need to hold these medications before being admitted to the hospital or undergoing a procedure?
AD: I will preface that anything that you hear here must first be discussed with your physician, as everybody is different in everybody’s situation. In general, people who are undergoing anesthesia—they will ask that the long-acting, once-weekly GLP-1 receptor agonists be held for at least a week prior to the procedure. They are known to slow down gastric emptying, and therefore they might have a greater risk of having food still left in the stomach, even from the day before. In the unlikely but unfortunate scenario that somebody vomits food, they can actually aspirate and go into their lungs, which actually can lead to a very dangerous situation. For that reason, most centers now request that people not take their long-acting, once-weekly medicines at least a week prior to a procedure. The daily versions, such as liraglutide (Victoza) or the oral medication semaglutide (RYBELSUS), typically right now they are still recommending that you can take it up until the day before the procedure and just hold it on the morning of the procedure. There is a lot of research; it is a very hot area of research, and so I’m sure we are going to be having changes of recommendations in the next year or two, so watch this space.
There’s another wonderful class of medication that I truly love called the sodium-glucose cotransporter-2 (SGLT2) inhibitors. So for our patients listening, basically the two most common ones are Jardiance and Farxiga; there’s also Invokana, Steglatro, and Brenzavvy, and this class of medications is also wonderful because they help protect the heart, they help protect the kidney, but rarely they can predispose people to going into a diabetic emergency, ketoacidosis. That’s why the FDA has really recommended that for people undergoing surgery, that really should be held for at least 3 to 4 days prior to undergoing surgery. Now, for something like a very simple cataract surgery, in which their diet is not actually affected, one could argue that it’s not as important to hold the SGLT2 inhibitors because they’re going to be eating as they normally do right after this very rapid procedure.
For larger surgeries or procedures that involve the gut in which people might not be eating normally; for example, colonoscopies in which you have to do a bowel preparation, and you have to take medications to clean out your stomach, and so you’re not eating as you normally would. In those situations, and in larger surgeries, I recommend that you withhold your SGLT2 inhibitors like your Jardiance or your Farxiga at least 3 to 4 days prior to even preparing for the surgery. Other medications, typically we say metformin or the sulfonylureas like glipizide or glimepiride, or the Dipeptidyl peptidase-4 (DPP-4) inhibitors like Januvia or Onglyza—all of those medications—we typically say to hold on the morning of the procedure, but you can still take them the day prior to the procedure. Lastly, insulin is very tricky, because it can depend on the type of insulin that you’re using and what time your procedure is taking place. And are you a type 1 or a type 2 individual? But in general, with insulin specifically, it’s very important to talk with your provider for your specific recommendation. In general, we say that you can take your medication the night before as you normally would, but on the morning of the procedure, you might need to decrease the doses of your basal insulin down to either 80% or even 50% of your home dose. You should not take any rapid-acting insulin if you are not eating. You should only restart the rapid-acting insulin after you have started eating.
RK: Those are all really important general recommendations to keep in mind. As you highlighted, really talking to your health care provider—asking which medications might need to be held and for how long, and practices for withholding or reducing insulin, even the night before in some cases, but definitely the morning of—shows that it is very important to talk to your health care provider.
Then there might be reasons that you’re admitted to the hospital; they’re unplanned for, and you can’t do this ahead of time. But for those where you know you are having a procedure, or you know that you have what we call an elective admission, where you have to be hospitalized for one reason or another, these are all really good tips to keep in mind.
It is also important, as you mentioned, to talk to the health care provider, your clinician, on the outpatient side about when to resume medication again. It could be that you might have to wait to start them again after discharge. Talking about discharge planning now, at the end of the hospitalization, when someone’s ready to go home, what are some of the aspects that a patient should expect to receive in terms of details from their health care team? What kind of questions should they ask? For instance, when should they call their health care provider, and for what glucose number? Then how does communication work with the outpatient diabetes provider?
AD: I think that the discharge process is actually, potentially, the most important part of what we call inpatient diabetes management. Unfortunately, oftentimes, it is overlooked or is just a second thought to some of the other inpatient diabetes management issues that we encounter. Truly I cannot emphasize enough that it is so important to set people up for success because hopefully they’re living outside of the hospital 99% of their life and only in the hospital 1% of their life. So we really need to make sure that 99% is optimized to ensure continued health.
I like to say that there are at least 3 pillars to set people up for a successful discharge. One is, as we’ve alluded to, medications. Having the discussion, “Does the home medication regimen need to be adjusted?” If it is being adjusted, “Are the medications affordable?” Because there is nothing worse than sending somebody home on, “I think this is going to be the perfect regimen for you. You should be on Ozempic and Jardiance and insulin,” and they go to the pharmacy, and they have a second heart attack because the cost of the medications could be $2,000 or more; Ozempic alone out of pocket is $1,000 a month. If your insurance doesn’t cover it, it becomes unaffordable, and you’re setting them up for failure. It’s important for the medical team to confirm that any medication changes are actually covered by the insurance and are affordable for the patient.
Secondly, as we alluded to, is checking sugar. How are we going to know that we’re achieving success once we’ve left the hospital? Is it going to be using finger sticks? Or will it be using a continuous glucose monitor? Again, that’s a conversation between the clinician and the patient, considering the patient’s preferences, cognitive abilities, as well as dexterity and cost. Of course, as you’ve heard prior, my bias is I’d love to put people in CGMs or continuous glucose monitors when I can. At the end of the day, again, that conversation has to take place of, “Is it affordable for you? And do you even know how to put it on?” I can say you should do it, but if people don’t understand how to actually put on a CGM and how to pair it with their smartphone—does the app even exist on their smartphone? Because not all smartphones have a compatible app that can then pair with every CGM. Sometimes people must get a separate standalone reader, and it really depends, and that conversation is important.
On discharge, the threshold that a patient is ready is that they feel comfortable and confident in their ability to manage their diabetes at home once they leave. Now they might not be 100% comfortable, as someone is starting to learn Spanish or starting to learn how to ride a bike. You might not be 100% comfortable doing it, but at the very least you have the basic know-how of what’s necessary. So if you’re going to be going home on insulin, someone should have taught you how to take insulin. Either a bedside nurse or diabetes educator should have shown you, with an insulin pen, how to put on the pen needle tip, how to dispose of it, and how to inject it. These are very important details that, again, clinicians or healthcare teams might take for granted, but if a patient has never done it before, it’s foreign to them. Modeling and the teach-back method, to show that the patient truly knows what they’re doing is important.
Every patient on discharge should be given a printout sheet that contains a list of their new medications and doses, follow-up appointments, as well as thresholds on which to go back or thresholds for which to notify their physician or to seek medical attention. I put that in all of my discharges for all the patients that I see; common thresholds might be “recurrent hypoglycemia: blood sugar less than 70, changes in symptoms,” or also “severe hyperglycemia: blood sugars that are above 350 and that are unable to come down with the medications that you’ve been prescribed.” In those situations, I think that people should be at least calling their provider or seeking medical attention, and that should be spelled out on their discharge summary.
RK: I think those 3 pillars are so important. Especially, making sure that they’re all covered during a discharge discussion with the healthcare team. Patients should certainly feel comfortable asking questions during that discharge time, as you mentioned, because the goal is not to just go home and figure everything out on your own, but really to have continued support and a plan of care.
AD: People, in order to really achieve success, need continued education and continued follow-up. Once you leave the hospital, how do we make sure that you’re not lost in the shuffle, that you don’t fall through the cracks, but rather that you have continued guidance in your journey with diabetes? I don’t expect somebody to be proficient with the language of diabetes after just one or two educational sessions in the hospital. In my mind, that can mean setting them up with a diabetes self-management training program or other outpatient diabetes education courses. I know here in Howard County we have the Living with Diabetes class to set them up, maybe potentially with a registered dietitian appointment on discharge.
Then really most importantly, is making sure that they actually have a primary care physician appointment, if appropriate, a referral to an outpatient endocrinologist to follow up with them. Usually, again, the same threshold applies for inpatient endocrine consultation as when I refer people to an outpatient endocrinologist, and that they either came in with a diabetes emergency or have poorly controlled diabetes or might be started on insulin and would really benefit from closer follow up with more care with regards to their diabetes.
RK: That’s all been such great information that you’ve gone over. It is so important for our listeners to know that if you do have to be admitted to the hospital, for whatever reason, that you will be taken good care of and that the regimens might temporarily change. Most importantly, on discharge, you might have some tweaks to your regimen. Knowing what the follow-up is and having a good plan of care is critical. Hopefully, with this knowledge, people will feel more comfortable should they have to be hospitalized and also know that it can be a smooth process as well, just even having the basic information.
Are there any last words that you wanted to share with our listeners if they do find themselves in the hospital at some point in the future?
AD: Don’t feel shy to ask questions, and you have to be your own best advocate. If something either doesn’t sound right or something is just confusing, there’s nothing wrong with asking and getting a better understanding of why something’s happening or what should be done. Ultimately, you are the most important person in the room.
RK: I wholeheartedly agree, and thank you so much, Dr. Demidowich, for your expertise, your education, the great analogies, and really walking through this entire process from precautions before being put in the hospital to what happens in the hospital and then what the transition should be back to home. We really appreciate all the knowledge you shared today. So thank you so much.
AD: Thank you, Rita, for having me. It was an absolute pleasure.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org.
We love to hear from our listeners. The email address is [email protected].
Thanks for listening. Be well and see you next time.
In Episode 41, Dr. Kalyani welcomes Dr. Justin Basile Echouffo Tcheugui for a special World Diabetes Day podcast. Dr. Tcheugui is currently the Associate Director for Student and Resident Education in the Division of Endocrinology, Diabetes and Metabolism as well as an Associate Professor of Medicine at the Johns Hopkins University School of Medicine. He is a physician scientist with training in Endocrinology and Epidemiology. His clinical practice and research focuses on type 2 diabetes, obesity, and lipid disorders. Dr. Tcheugui’s interests include the international epidemiology of diabetes and he previously trained in the UK and and Africa.
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani at Johns Hopkins. We developed this podcast as a companion to our patient guide to diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org. Today, we are thrilled to welcome Dr. Justin Echouffo, MD, PhD. Dr. Echouffo is currently the associate director for student and resident education in the division of endocrinology, diabetes and metabolism, as well as an associate professor of medicine at the Johns Hopkins University School of Medicine.
He is a physician scientist with training in endocrinology and epidemiology. His clinical practice focuses on diabetes, especially type 2 diabetes, as well as obesity and lipid disorders. His research also examines the links between diabetes, obesity, and related cardiovascular disease. Welcome, Dr. Echouffo.
Dr. Justin Echouffo Tcheugui, MD PhD: Thank you Dr. Kalyani. It’s really a pleasure for me to be on the podcast today.
RK: We are so excited to have you here on our special World Diabetes Day podcast to talk about what diabetes is like in other parts of the world and what is being projected for future diabetes rates as well.
I wonder if you could start off by telling us about some statistics related to diabetes around the world. How do diabetes rates compare in different countries around the world?
JE: In terms of global statistics of diabetes in the world, the International Diabetes Federation usually releases numbers around all world regions regarding diabetes. The latest estimate, which dates back to 2021, indicates that diabetes prevalence in the adult population age 20 to 79 is estimated around 10.5%. This is quite high in proportion, which corresponds to approximately 537 million people in the world with diabetes, which is a quite high number. That prevalence of diabetes is quite similar among men and women. There’s really no sex differential in terms of the rates of diabetes around the world, but the rates of diabetes are usually influenced by age. We have the highest rates of diabetes among people who are 75 years of age and above.
There’s also a differential in the prevalence of diabetes between the urban and rural areas in the world. With a prevalence in the urban area overall being around 12% compared to 8% in rural areas. The prevalence is also much higher in high-income countries at around 11% compared to low-income countries at around 5%.So that’s an overview of the how diabetes looks like around the world.
Obviously, there are differences across regions of the world, as I said, with high prevalence in high-income countries, but the low-income countries are quickly catching up and the prevalence is projected to be much higher in those countries by 2045.
Maybe in the rest of the conversation, we are going to go into the details of those numbers.
RK: Those numbers are just astounding to hear. 1 in 10 adults around the world have diabetes and more than 500 million people are living with diabetes around the world. It sounds like those rates are projected to grow even greater and even faster in the future.
You talked a little bit about regions of the world, specifically low-income and high-income countries. Can you tell us a little bit about what those terms mean and which countries are the ones that are really projected to have the greatest numbers now and grow in the future?
JE: In terms of the current numbers and which countries have the sort of the highest number of people with diabetes, they’re mostly in high-income countries, but also in middle-income countries. The four top countries where you have the highest rates of diabetes are China, where currently there are approximately 141 million people with diabetes; followed by India, where there are about 74 million people with diabetes. Then in the third position, we have Pakistan, where there are approximately 30 million people with diabetes, and then followed by the United States (US), where we have about 32 million Americans who have diabetes. As you can see, those top countries include one high-income country, which is the US, and the rest, we may argue that those are middle-income countries. It is quite understandable because the populations in those countries are very large. India and China have the largest populations in the world.
I think this is also related to a rapid urbanization, especially in China, India, and also in Pakistan. The rate of urbanization is associated with change in lifestyle, especially change in nutritional habits as well as change in physical activity habits. With more physical inactivity leading to obesity and then to high rates of diabetes, especially in China and India and Pakistan.
The other aspects relate to the ethnic groups in those countries. Obviously in India and Pakistan, you have South Asian people who display a sort of high level of susceptibility to diabetes, in addition to these lifestyle factors. That’s four of the top countries in which diabetes is very highly prevalent.
In terms of the regions of the world, the highest prevalence is in higher-income countries, but the middle-income countries are catching up very quickly. It’s projected that in the sort of middle-income countries by 2024, there will be an increase in the number of people with diabetes by at least 200 million people.
It is also projected that by 2045, the highest relative increase in the number of people with diabetes is going to be in Africa. I must point out that the numbers in Africa, although in absolute numbers and also relative numbers, look low compared to the high-income countries- there are issues with how the data is collected in those parts of the world. There are not enough national surveys to (capture) the real prevalence of diabetes. A high number of people with diabetes, especially in Africa, may go undiagnosed. I think that there is an underestimation in the number of people with diabetes in that part of the world. So, the current numbers and the future numbers are probably much higher than what we know now.
RK: Thank you for bringing up that important point that part of what we know is based on the data that we have. There are parts of the world where it’s hard to get good numbers on how many people actually have diabetes. Whether it’s related to testing facilities or having a central registry or a central database, the numbers that we are hearing about today that you are talking about are probably an underestimate, wouldn’t you say, of what’s truly out there?
JE: Definitely.
RK: When you talk about prevalence, just for our audience, you mentioned the actual numbers in these countries, China, India, Pakistan, and USA. But when you talk about prevalence, that takes into account how many people are actually in the country as well.
JE: Yes.
RK: You said, China and India being the two most populous countries in the world, you might expect that they’d have greater numbers of people with diabetes. But when you talk about prevalence, that’s really giving us a sense of the proportion of the population that has diabetes. If I heard what you said correctly, it sounds like in low- and middle-income countries (LMICs), such as in Africa and the Middle East that the prevalence (the proportion of people that live with diabetes) is higher. Is that right?
JE: It’s higher. About 80% of the overall (global) population of people with diabetes live in these low- and middle-income countries.
RK: Wow, that’s such a large number. Being here in North America it is important for us to realize that there is truly an epidemic of diabetes, not only within our country. When 80 percent of the people with diabetes in the world live in low- and middle-income countries, it really behooves us to think about, on a global scale, what we can do to address this public health issue.
From what I recall in some parts of the world, you mentioned that the overall prevalence is about 10%, but I seem to recall that in some parts of the world, it can be up to a third of the population that has diabetes. Isn’t that right, in some parts of the world?
JE: That is correct. So, there are some parts of the world, especially in the Middle East. In those low- and middle-income countries in the Middle East, I think that India is also evolving and going towards that end of the spectrum, where about a third of the population has diabetes.
RK: It is important to recognize that when we give these numbers that 10% in the world have diabetes, not only is it probably an underestimate based on the reasons we talked about, but there is a wide range.
JE: Yeah, it is a wide range. As I said, the upper spectrum or the high spectrum is even more than 10% and the lower spectrum is about 5%.
RK: It is pretty remarkable and really drills down the importance of why this has become such a huge public health issue. One of the terms that I’ve seen used more often, and perhaps you could shed light on this, is this low- and middle-income countries versus high-income countries.
In the past we used to say, developing and developed nations. There are reasons why we don’t use those terms anymore. I wonder if you could comment briefly on the use of the terminology now that we are using on the podcast and that is commonly used.
JE: Yes, I think it has much more to do with the level of economic development in those countries, so it’s not that far away from the former concept of developed or underdeveloped. We want to use a more appropriate language and (label) countries on the basis of economic viability, if I may say so.
There is some sort of looseness because when you classify China these days as a middle-income country, is it really a middle-income country? You classify India as a middle-income country, it’s basically just an average because there are certain areas in India that are not that different from high-income countries.
Places like Brazil or places like Russia, which are also to a certain extent upper or middle-income countries. It is not very clear cut; it is an evolving concept. The countries are not necessarily permanently in a category. But places like in Africa where there’s much less economic development are going to be low-income countries.
RK: It is changing, right? As you said as well, and I think it sounds like China at times might be called an upper- to middle-income country versus a middle-income country. I’m sure it is somewhat reflective of how things have been going in recent times.
JE: Yes, it is a World Bank definition. So that has been adopted by the International Diabetes Federation to classify and to rank the country on the basis of their economies.
RK: And do you think that there’s a correlation or an association between where a country ranks on the scale of upper, middle- or lower-income to the prevalence of diabetes? Or is it variable?
JE: It is variable because it’s tricky in the sense that even within the low- and middle-income countries, it all depends on whether people are in urban or rural area, right?
Because of urbanization, there’s an increase in the prevalence in urban areas because of the change in lifestyle and (this is reflected) in the rates of diabetes. The other aspect is that the economic level of a country will correlate with the ability to address the epidemic in many ways. In the ability to put into place preventative measures, to prevent the occurrence of obesity and to manage the disease. That will influence the pool of the new number of people who have diabetes, and it will also influence the overall pool of people who have diabetes.
So, my understanding is that a lower socioeconomic level over time is going to be correlating with a high prevalence of diabetes.
RK: That is so interesting that in some ways the level of economic development of the country may reflect its capacity to support people with diabetes for prevention efforts and then also for treatment.
That is very interesting. Now you mentioned urbanization. I wonder if we could turn to that just briefly to talk about what we mean when we say “urbanization.” It sounds like even within a country there could be regions of the country, urban versus rural, where we could see differences in diabetes rates, even within the country because of urbanization. Can you talk a little bit more about that?
JE: One of the quintessential examples to illustrate the urbanization phenomenon is an example from the studies of British epidemiologist Geoffrey Rose. He conducted studies in the Maasai population, which it’s an ethnic group that lives in Kenya.
What he did at the time was in the late 1980s, early 1990s, he went to Kenya and look at the Maasai people living in Nairobi, which is the capital city of Kenya and compared the sort of metabolic profile or the health profile with that of the Maasai people living in the rural areas. So traditionally the Maasai people are pastoralists, they look after cattle. What they do is that the Maasai people are running around with the cattle during the whole day, so that’s a lot of physical activity. They also live on meat, from the cattle and then milk, mostly.
So, when they move to cities, or to Nairobi, what happens is that there is a change in their nutritional habits. They don’t follow the traditional Maasai diet anymore, and they adopt a more Western style diet, and they are essentially physically inactive. As a result of that, the rates of metabolic disease, including diabetes, are much higher in the Maasai people living in Nairobi compared to the Maasai people that remain in this ancestral land. The other thing is that the Maasai people living in Nairobi, are using modern equipment. So the mode of transportation, they don’t do any physical activity, they use cars, and they use public transportation to do the stuff that we do around here.
So as a result of that, they are definitely more obese, and they have more diabetes. So, urbanization is changing the lifestyle that is related to the development that is happening in those countries. Moving from a sort of traditional way of life and less mechanized way of life to a more developed way of life.
RK: It’s interesting that the concept of being more modern is almost associated with this concept or these trends in urbanization. Like you talked about, more mechanization, changes in diet, decreased physical activity, even the environment changes in that setting too, in terms of what people are exposed to. We are seeing this all around the world
JE: It’s all around the world, so it’s rapidly happening. It happened rapidly in China; it’s rapidly happening in India. It’s rapidly happening in a lot of the so-called middle-income countries, but it’s also happening in the low-income country.
RK: And then we are also seeing parallel trends and rises, like you said, in obesity and diabetes.
Do you think that urbanization and metabolic diseases have to go hand in hand? Or do you, from your opinion, think that there are things we can do to prevent or mitigate it, knowing that these trends in urbanization will continue?
JE: They definitely go hand in hand because studies are showing that the trends of the rise in diabetes parallel the rates at which urbanization is happening. What can we do to prevent those rising trends in diabetes? I think fundamentally we must rethink, in a more modern environment, we have to rethink our approach to physical activity and also nutrition. I can use the example of England that I know a little bit about. In the policies for transportation, there could be a conscious effort to push people to a certain extent to be more physically active.
For example, in England, there’s the notion of park and ride. What people do, what public transportation and the public policies in terms of transportation do, is try and force people to be more physically active by creating an incentive for people to park their car somewhere in a public parking and then to ride a bike to the office. The other thing is that in public areas, for example, in malls, where the escalators and things like that, what people have done, especially in the southern part of England, is remove some of the escalators in those places and force people to do a little bit more physical activity in the normal daily life.
The other thing in terms of nutrition is to make sure that what is available to people meets a certain number of requirements in terms of quality. With less processed food or foods that are less rich in carbohydrates are offered to the population. What I’m trying to say is that at the policy level, at the societal level, that’s where action should be much more than at an individual level. People are going to, in terms of nutrition, they’re going to use whatever is available to them in their environment.
Their ability to be physically active, they’re probably going to go with whatever the environment is offering. An environmental change, a societal change in the so-called developed societies is probably, in my opinion, the way to go in terms of prevention of the levels of obesity and in effect is going to be a reduction in the levels of diabetes.
RK: I appreciate your input, and your thoughts based on not only your experience having lived in England, but also the research that you do in this space as well- in prevention and systems level changes. While it sounds like urbanization and metabolic diseases often go hand in hand, they don’t have to with thoughtful consideration of the societal policies we put in place.
Also, walkability, I thought, was interesting, not having escalators in a mall and really for those who are able to go up the stairs and don’t have physical disabilities or physical limitations to really encourage that. The whole notion of park and ride, when I think park and ride here in the United States it’s usually parking your car and either carpooling with someone else in their car or going on a bus. The notion of a park and ride, as you’ve described it, and as you’ve seen in England, is parking the car and then riding a bike. I love the idea that you can do both and get physical activity at the same time. But it also takes having bike lanes or having safe places to be able to bike and putting those systems in places, so it really is at a larger scale.
JE: It is larger scale. So, it’s housing; it’s transportation. Another sort of quintessential example is the example of the Netherlands where, I don’t know if you’ve ever been to Amsterdam, you see the sheer number of bikes that you have in Amsterdam.
So, the result of that is if people are biking 30 minutes twice a day to work and back from work, they definitely have the level of physical activity recommended by the American Heart Association. So yes, it requires a system level effort in a modern society, in addition to the individual level effort.
I think the individual level efforts are key, they’re important, but my sense is that changes at the societal level are critical.
RK: It sounds like they might also need to be tailored to the culture and the norms of the country. Where you’re trying to instill these policies, for instance, in parts of the world, where it might not be typical for all members of a population to be out in public and exercising. Those kinds of things also need to be incorporated in terms of what is acceptable in that culture and how we can work within the cultural norms to really foster healthy behaviors. Isn’t that right?
JE: It’s right. The whole concept of being physically active varies from one society to the other. I don’t think that having a gym membership as we usually recommend here in the US will necessarily work for everywhere in the world, or within every group in the US. Based on my personal experience of the African community, I don’t think going to the gym is an accepted practice. So, the question becomes within the cultural norms of such a community, what are the things that people could do to increase their level of physical activity?
In that regard, my take is that “every little helps”. It’s very difficult to say, for example, to a woman who is not used to doing a certain number of things or to be physically active in public, to just come out and go to the gym. I would say starting with simple things like just stepping out and walking is important and it’s critical.
I usually say that “every little helps.” Within the cultural norms of the community, the little things that could be done and that are acceptable in that community will go a long way to increase the level of physical activity. The other aspect in terms of the cultural norms is in terms of the diet. There is no universal diet. The nutrients are the same, but the approach to food or eating is different from one part of the world to another. In some cultures, using carbohydrates or a diet without carbohydrates is not conceivable. These are things that must be considered.
I’ve seen this even in my clinical practice where you send, for example, a South Asian man to the nutritionist, sometimes there’s no satisfaction because they’re, they are given sort of general recommendations that do not account for South Asian food, the components in the South Asian food or the whole concept of eating in the South Asian culture. So those things have to be taken into account to be able to see meaningful changes or changes that are going to be beneficial to managing or preventing diabetes.
RK: Yeah, I fully agree. Incorporating the knowledge of the cultural context in the way that we, for lack of a better word, prescribe lifestyle therapy, whether it’s physical activity or nutrition management. Diets range around the world; some are more corn based, some are more rice based, some are more bread or wheat based, and you can’t change that overnight in a conversation. Instead, acknowledging the context within which the individual is coming from is important as we try to really help that particular individual reduce the risk of diabetes and the complications as well.
We’ve talked a lot about urbanization and environmental forces or societal forces that might increase the risk of an individual developing obesity and diabetes. We didn’t really touch upon genetic factors, these differences that we are seeing around the world in prevalence. Certainly, trends such as urbanization do contribute, but are there genetic factors for why people in some parts of the world might be more likely to develop diabetes than others?
JE: Yes, there’s a combination of both the environment and genetic factors. So we usually say that there needs to be an interaction between the genes and the environment and it seems that interaction leads to more diabetes in some ethnic groups around the world.
If we start with the US where, for example, the environmental change seems to meet in Pima Indians, a sort of a specific genetic substrate, what ends up happening is that we have very high rates of diabetes among Pima Indians. We also seem to have a similar situation with South Asians to a certain extent. They seem to show a high level of susceptibility to diabetes, within the same environment compared to other ethnic groups. Whereby even the rates of progression from pre-diabetes to diabetes are much higher and that happens much faster in South Asians compared to other ethnic groups.
The susceptibility is also much higher in Blacks or in Latinos or Hispanic compared to white populations across the world. So there seems to be a genetic substrate, in addition to the environmental influences that explain the difference in rates of diabetes across ethnic and racial groups.
RK: Thank you for going over that. I think it’s important to realize also when we think about prevention that there are some higher-risk groups where we might need to give targeted attention, at an earlier stage, to really prevent diabetes because of the higher risk that they have due to these of genetic factors as well.
JE: Just to add something since you’re talking about prevention, even the response to lifestyle changes is not uniform across ethnic groups. In terms of diabetes prevention, it seems that some ethnic groups are more responsive to lifestyle changes than others. And that’s something to consider, it’s also an indication that there is a sort of genetic susceptibility there.
RK: Wow, that is interesting to highlight that even the response to treatments or response to lifestyle changes can differ as well. It just makes it even more complex and all the more reason that treatment needs to be individualized for the person with prediabetes or diabetes. Now we talked about urbanization; we talked about genetic factors. What about aging? We are seeing people live longer and longer. We are seeing an aging of the population in general. Are people with diabetes living longer? How is that contributing to what we are seeing in terms of epidemiology around the world?
JE: Even before talking about how long people are living with diabetes, let’s talk about the effect of age itself, because of the fact that there are higher rates of diabetes in all individuals essentially, for two reasons. It’s the natural process of the body that, as people are aging, their metabolism is deteriorating and consequently, there will be more diabetes as people are growing older. High rates of diabetes in older individuals. So that’s one aspect.
The second aspect that you alluded to is the fact that, especially in high income countries where we have the resources and then we have access to the appropriate medication, people with diabetes are living longer. Here I would highlight that this is much more relevant to type 2 diabetes than type 1 diabetes. So, we have people who are living longer and as a result, people of a certain age are increasing the overall pool of people with diabetes around the world. That’s in a nutshell, what I can say about aging.
RK: Yes, and it is important because we are going to see more and more older adults who, like you said, are at higher risk of developing diabetes. Almost a quarter of our older adult population lives with diabetes. Currently another half is at risk for diabetes with prediabetes. Then as people develop diabetes, they live longer compared to the past. Also, from a societal perspective, thinking about how we are going to support all these older adults with diabetes and really prevent complications as well.
JE: Maybe something to add in terms of aging or age, it is the fact that the age at which the diagnosis of type 2 diabetes is made seems to be an important factor in terms of the severity of the disease. Emerging data indicates that an early age of diagnosis seems to be an indicator of a more severe form of disease, a more rapidly progressive disease, with a high rate of complications. Even when complications are occurring, they’re much more devastating. So much so that an early age of diagnosis of type 2 diabetes is associated with a high rate of cardiovascular complications and sometimes even a poorer control of the disease. So early age of diagnosis seems to be an indication of a much more aggressive form of disease, which is usually associated with a higher degree of obesity.
RK: We are seeing that also with the rise of obesity in children, aren’t we?
JE: Definitely
RK: With children and adolescents being diagnosed with diabetes at a younger age, being at higher risk of complications than their adult counterparts. So, both older ages have higher likelihood of developing diabetes, but if you are diagnosed at a younger age, there is a much higher risk for (some) complications.
You touched upon your experience in England, having lived there before. I wonder if you could share a bit more about your experience living in Africa and what you’ve witnessed there in terms of how diabetes was diagnosed and managed and how it might be different than what we see in North America and other parts of the world.
JE: I was born in Africa; I still have parents there and lived part of my life there and had my sort of initial training there. Historically, even if you go into traditional textbooks, it was thought that diabetes was a rare disease in Africa, but I don’t think it’s the case any longer. I think the thought that it was rare is probably because it wasn’t diagnosed. It’s underdiagnosed, and a lot of people have diabetes, especially type 2 diabetes, for a very long time before it comes to medical attention. So, people are diagnosed late in the process, meaning that by the time they present to their physician, they generally have complications. Those complications can be acute complications, in terms of hyperglycemic crisis, like diabetes ketoacidosis or hyperosmolar hyperglycemic state. As a matter of fact, my maternal grandfather died of diabetic ketoacidosis with type 2 diabetes. This tells you something about the state of diabetes in those places.
The other thing with the high rates of long-term complications is that there’s also an inherent difficulty in not just diagnosing but also managing the condition in that context where the resources are very limited. Both in terms of the medication and all the devices that are necessary for an appropriate management of diabetes. But it’s also limited human resources in terms of people with the appropriate training to take care of diabetes. So, the number of primary care physicians is low and then also the number of specialists and even in terms of the nurses with sort of specialist training in diabetes or diabetes management is very limited. As a result, people with diabetes do not live as long as we will here in America. It is a very different context; it is a very different situation to what we have here in America.
The other thing that I forgot to mention is that I believe, in African context, a lot of heart attacks are probably related to diabetes. So that goes undiagnosed. It’s an important risk factor as important as hypertension. Now it’s increasingly being recognized because there are now national policies for diagnosing diabetes or detecting diabetes earlier. Things are slowly changing. So, it’s still an underdiagnosed disease in that context and poorly managed disease in that context. As a result, there’s a very high rate of complications.
RK: It’s so interesting because, in the United States, we’ve had such an emphasis on risk tests and diagnosis at an earlier stage and screening programs. But what I’m hearing from what you’re saying, in Africa and in many parts of the world, I’ve seen this in India as well, is that individuals don’t present to their healthcare provider to get diagnosed. Or if they are, in the diabetes range, perhaps the way it’s communicated your borderline, diabetic or you have a touch of diabetes or a touch of sugar, it’s also the way that it’s communicated to the person living with the condition in terms of how urgent it is to get treated for it. That idea of underdiagnosis and late diagnosis makes it difficult, not only to know the numbers, like we talked about earlier in the podcast for how many people have diabetes, but also to reduce the complications from the disease if people are getting diagnosed later, or they’re not getting diagnosed at all. Perhaps many people who die of heart attacks in the African diaspora may have undiagnosed diabetes. That’s such an interesting contrast to what we see in higher-income countries, where a lot of the focus has been on diagnosis. Do you think part of that is related to access? You mentioned limited primary care doctors that are available. Do you think that not having as many touchpoints with the healthcare system contributes to people not getting diagnosed? Do you think knowledge or awareness perhaps could be emphasized more? In your opinion, what do you think might be the reasons? Or is it a cultural factor that people don’t see it as important to address right away? Why is it that we are seeing these delays in diagnosis as you talked about?
JE: It’s definitely multifactorial. It’s a combination of all the things that you just mentioned. I think there are not enough touch points to get healthcare, that’s one aspect. Access to healthcare is limited, and even available healthcare in terms of the resources; resources are also limited to diagnose. For example, we do point-of-care A1C here, and I don’t think that’s readily accessible in many areas in Africa. There needs to be an effort to make those things available and accessible to the population. There is also another aspect which has to do with knowledge – knowledge within the medical community and knowledge in the general population overall. So, I think the diabetes knowledge is limited. But also, understanding or awareness of the condition in the general population is also limited, that may be influenced by cultural factors. How do we conceive of diabetes? Do we even think that it’s a disease? Because in a context where people are just being told that their blood sugar is elevated and they don’t necessarily have an active complication, they may not necessarily believe that they are sick, or that they have any sort of medical problem. The other thing is they may look for alternative ways of addressing the issues because there are traditional local healers, that people still believe in. Then they consult those people, and they are not equipped to address diabetes appropriately. So those factors come into play here.
RK: The second part of what you mentioned was the availability of treatments. I wonder if you could talk about whether treatments for diabetes are similarly available around the world and why we might see differences in access to treatments. It seems like in the ideal world, everyone should have the same access, but why are we not there yet? Why has this been such a challenge?
JE: It’s definitely a challenge. If we look at things through the lenses of equity, everybody should have access to the same resources around the world. But you can imagine, there are huge disparities in terms of the availability of diabetes medication around the world. There are many reasons. Some of the reasons, for example, include that these medications must be produced by someone, right? The cost of production is very high. Many of the low-income countries cannot produce those medications due to the cost of production, especially if you take the example of insulin. So, you move from human insulin to analog insulin; the cost of production is very high. It’s financially untenable for those low-income countries.
The other thing is that the market, in terms of medication, is in the hands of a few multinational companies. For more than 90 percent of diabetes medication, the market is controlled by a small number of companies. So, the low- and middle-income countries will not, or cannot compete. They don’t own those multinationals, the side dictating the prices of the medication. It is simply not affordable for those countries or to the population in those countries. Those countries cannot regulate the prices of medication. They are generic medications that patents no longer exist for, but those medications in terms of effectiveness may be limited. So, we’ve been using metformin, metformin is generic. There are other medications like sulfonylurea that are generic that could be affordable in those areas. But are these medications enough to be able to control diabetes?
The other aspects are the devices, that is, all the technologies, the continuous glucose monitors (CGMs), or, in some instances, the pumps, or even the glucometers. Before thinking about CGMs, there are glucometers, with manufacturers in high-income countries. Those things that are critical for self-management are not available in those low- and middle-income countries. In places where you don’t have these devices, it does affect diabetes management.
The last thing is the infrastructure; even to get access to those medications, there must be an infrastructure in terms of the pharmaceutical infrastructure—that doesn’t exist. So, they will not have access to those medications. Globally, there are no efforts to make those medications available to those countries.
RK: Access is so important when we talk about social determinants of health, or when we talk about inequities or disparities in care. As we know, there are so many new developments, medications, and technologies, such as pumps and CGMs. But the cost can be prohibitive; access can be prohibitive for many people around the world, and that really is an issue that needs to be addressed. It is not enough to have things on the market just in the higher-income countries, but they really must be accessible, especially since, as you mentioned, 80 percent of people with diabetes live in low- and middle-income countries.
That’s a huge issue, and I appreciate you talking about it.
JE: Maybe it’s bound to be worse with the newer medications, right? So, we have all those Glucagon-like peptide-1 (GLP-1) receptor agonists that are emerging as powerful medications. If in the US, it’s not accessible to everybody, because of insurance issues, you can imagine that in those places (low- and middle-income countries), the situation is even going to be worse.
RK: We have disparities right here in the United States, as you mentioned, for the GLP-1 receptor agonists, sodium-glucose cotransporter-2 (SGLT2) inhibitors, and other medications; we can only imagine what it’s like in parts of the world where insurance might also be limited. It is a huge issue and one that we could probably have a whole separate podcast on.
One last question that I have for you, as we talk about the global environment, people don’t live in silos anymore. People don’t just stay in one country; we are a very mobile population; people are moving; they’re immigrating. Focusing now back here on the United States, as we think about immigration and people coming from their home countries, their traditional diets, and the traditional activity levels to perhaps a more Western lifestyle, a more urban lifestyle. How does that impact the risk of diabetes for these migrant communities? And how does that impact the way that we manage diabetes in a country that’s becoming increasingly multicultural? I wonder if you have some comments.
JE: The fact that people move from one country to another country influences their rate of diabetes, especially that rate of diabetes is compared to that observed in people who are born in the US. The general tendency is that for newcomers or first-generation migrants there is an issue that has to do with acculturation. The result of that is the rates of diabetes in those communities, if you look at, foreign-born blacks, foreign-born South Asians, or foreign-born Latinos, that tends to have an effect on the rates of diabetes, right? Which generally tends to be slightly higher than that of those people who are born in the US. This raises the question—why is that the case? I think as we mentioned, there could be a genetic component, but we think that this is probably related to the cultural effects or cultural factors that have to do with physical activity patterns and nutritional patterns. In terms of addressing diabetes, if one is very keen on addressing the rates of diabetes in the community, those cultural aspects must be taken into consideration. What happens with migrants is that they tend to want to retain the nutritional habits or the physical activity habits of the home or their original culture. Any intervention in those communities to address, prevent, or manage diabetes must take those things into consideration.
Some aspects have to do with tailoring the message for those communities and making sure that they can understand the message. Sometimes, there may be a need to use the original language because some people do not speak English. In terms of delivery of physical activity intervention, those must account for the cultural norms until they can adopt the norms of the host country, which in this case is the US. Those things must be taken into consideration.
RK: As first generation and second generation live longer and longer, in the United States and we see more acculturation over time, how does that impact the risk of developing diabetes in these migrant communities?
JE: In a lot of migrant communities, as those communities live longer in the country and as they become acculturated, as generations pass, the rates of diabetes become similar to that of the host population. The newer generation populations are much more like the host populations, and the differences overall will disappear with time.
RK: So, it seems like there are many factors, right? Retaining the native diet, but also changing behaviors in the new host country that might either increase your risk initially or, over time, might make the risk similar to people that also were born in that country from other ethnicities. It is also another factor, like you said, to consider in the way that we deliver care, particularly lifestyle interventions, to acknowledge that context as well.
JE: Yes, maybe one thing also in terms of the cultural aspect is the notion of how those people relate with the health system. The first generation is going to have some challenges in terms of relating to the health system or in navigating the health system. That is probably going to, over time, disappear because the next generations are more accustomed to the practices in the host country.
RK: Just to clarify a point: for those people who are first-generation or just immigrating, their risk of diabetes does increase over time?
JE: It does increase for them, yes.
RK: But in subsequent generations, you’re saying for their children and their children’s children the risk for those individuals who are born in the US might become more equal to other people born in the US.
JE: It may become more equal to the local populations. Unless you belong to an ethnic group that intrinsically has a susceptibility that is higher than that, for example, in the US of US born Whites.
RK: It is so interesting to hear about all the different factors that we’ve covered today: urbanization, aging, immigration, differences in genetic factors around the world, differences in access to care, and even resource allocation and availability of health care providers. We have touched upon a lot of topics. You have offered eye-opening insights into the epidemiology of diabetes around the world, describing how management and treatment might be different. It has been so great to hear about your experiences living in other parts of the world.
I wonder, in parting, as we have a very global audience listening to our podcast today, what would you say to people around the world who have diabetes, who are challenged in their local environment to really get the outcomes that they desire? How would you suggest they approach some of these challenges that we’ve talked about that might vary depending on where they live around the world?
JE: I think, irrespective of the environment across the world, in terms of managing diabetes, the best success is obtained when it is a collaborative effort; a collaborative effort with the participation of the patient. The patient is really at the center. They are the ones driving the process, but with the help of the providers, and I’m saying ‘the providers’ here because it’s not just the primary care provider, but there are other members of the team, be it the people who are doing diabetes education and even the pharmacist.
So, it takes a village to have good outcomes for someone with diabetes. Those people who are struggling should not try and do it alone. They should look for help. They should try and maximize the very limited resources that they have and use all possible resources to try and address the problem. Essentially, they are not alone, and they should not do it alone. They should do it in collaboration with others. Sometimes, even peers hearing from other patients can be very helpful because that could point to resources that they are not aware of within their own environment.
RK: Dr. Echouffo thank you so much for all your insightful comments and for providing your expertise on diabetes in different countries and around the world. I think what you said, ‘It takes a village,’ is a great sentiment as we talk about the different villages around the world, and whatever your village may be, it does take a partnership. Really the person with diabetes is at the center of it, but it takes a village. We are fortunate to have you on the podcast today and really thank you for all your time.
JE: Thank you for having me today.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org.
We love to hear from our listeners. The email address is [email protected].
Thanks for listening. Be well and see you next time.
In Episode 40, Dr. Kalyani welcomes two colleagues from Pediatric Endocrinology, Dr. Sheela Magge and Dr. Risa Wolf. Dr. Magge is a professor of pediatrics and Lawson Wilkins Endowed Chair of Pediatric Endocrinology at the Johns Hopkins University School of Medicine. She is the director of the Division of Pediatric Endocrinology and Diabetes at Johns Hopkins and is dedicated to improving the lives of youth. Dr. Magge is currently PI of an NIDDK R01 examining how differential body composition can impact cardiometabolic risk. She is also the Johns Hopkins Principal Investigator of the U01 Discovery Study, a longitudinal cohort study aimed at understanding and targeting the pathophysiology of youth onset type 2 diabetes. Dr. Risa Wolf is an associate professor of pediatrics and the director of the Pediatric Diabetes Program at the Johns Hopkins University School of Medicine. Dr. Wolf is the principal investigator of the ACCESS trials, which implement autonomous, artificial intelligence, diabetic retinopathy screenings in pediatric populations. She is also the founder and medical director of Camp Charm City, a day camp for children and teens living with diabetes formed through a collaboration between The Johns Hopkins Hospital and the American Diabetes Association (ADA).
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani at Johns Hopkins. We developed this podcast as a companion to our patient guide to diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org.
Today, we are thrilled to welcome two colleagues in Pediatric Endocrinology, Doctors Sheela Magge and Risa Wolf, who will be speaking with us about diabetes in children. Dr. Magge is a professor of pediatrics and Lawson Wilkins Endowed Chair of Pediatric Endocrinology at the Johns Hopkins University School of Medicine. She is the director of the Division of Pediatric Endocrinology and Diabetes at Johns Hopkins and a clinician investigator dedicated to improving the lives of youth with type 2 diabetes, obesity, and the cardiovascular complications of these conditions. Dr. Magge has been continually funded by the NIH for the last 16 years. She is currently PI of an NIDDK R01 examining how differential body composition can impact cardiometabolic risk and is also the Johns Hopkins Principal Investigator of the U01 Discovery Study, a longitudinal cohort aimed at understanding and targeting the pathophysiology of youth onset type 2 diabetes.
Dr. Risa Wolf is an associate professor of pediatrics and the director of the Pediatric Diabetes Program at the Johns Hopkins University School of Medicine. She’s an NIH funded investigator with research focused on using innovative technologies to improve outcomes in pediatric diabetes. Dr. Wolf is the principal investigator of the ACCESS trials, implementing autonomous, artificial intelligence, diabetic retinopathy screening in the pediatric population. She’s the founder and medical director of Camp Charm City Diabetes Camp, a collaboration with the American Diabetes Association to improve access to diabetes camping for underserved youth. Thank you both for being here, Dr. Magge and Dr. Wolf. We’re so excited to have you.
Dr. Risa Wolf, MD: Excited to be here.
Dr. Sheela Magge, MD: Thanks for having us.
RK: Diabetes in children has been getting increasing attention, over the past few years and we’re really looking forward to having you shed some light on what is going on in this area. First, I was wondering if you could tell us how common is diabetes in children and what are the different types of diabetes in children that can be diagnosed?
SM: There are two major types of diabetes and a few more rare causes as well. The most common type of diabetes to happen during childhood is type 1 diabetes. It used to be called juvenile diabetes, but we don’t use that name anymore. It’s caused by the body attacking its own cells that make insulin, and those kids do not make enough insulin. The other type of diabetes we are seeing more and more of is type 2 diabetes during childhood, which used to be seen almost always in adults. But with the increases in pediatric obesity, as well as other environmental factors, we’re seeing more and more during childhood. There are some other, more rare types of diabetes, but I think for the purposes of today, we can focus on those two. And maybe Dr. Wolf can talk a bit about how common they are.
RW: Absolutely. It’s estimated that there are just over a million children worldwide with type 1 diabetes. And that translates to about one in every three to five hundred kids will have type 1 diabetes. Type 2, as Dr Magge said, historically was very rare in kids, but has been increasing significantly in the incidence and prevalence and now accounts for approximately 5 to 10% of all kids with diabetes, but about 50% of new cases in adolescence, so in the teenage years, and accounts for essentially one in every 1000 or 2000 kids. And in general, for both type 1 and type 2, the incidence has been increasing really over the last two decades. At a very steady rate, a slow and steady rate for type 1, but really at a much higher rate for Type 2 diabetes is estimated as the incidence has increased by 30% over the last decade or two.
SM: And it seems to be increasing year over year. The most recent data from the search for diabetes in youth study shows if you adjust for race age, sex, An incidence increase of about 4.8% per year increasing for type 2 diabetes during childhood. And it seems to affect much more commonly youth of color or racial and ethnic minorities with increased prevalence in our African American, Hispanic youth, Asian youth and Native American youth as well. Although in certain populations, it’s more rare, it’s more common in others.
RK: That’s so amazing to hear about; the changes in the patterns really of the types of diabetes in children. And it really sounds that while both types have been increasing, type 2 diabetes has just taken off in terms of the numbers of children, especially in adolescents, it sounds like being diagnosed.
Dr. Wolf, I think you mentioned that 50% of new cases in adolescents are type 2 diabetes. And that seems pretty remarkable when you think about, as recent as a decade or a few decades ago; were we even talking about type 2 diabetes back then? What has caused this increase, especially in type 2 diabetes over the past few decades?
RW: It’s interesting because if you look at the diagnosis of adolescence two decades ago, in the early 2000s, the numbers that are reported in literature are less than 3% of cases were type 2. So now we’re seeing if it’s an adolescent, it’s a, a 50, 50 chance it’s type 1 or type 2. The biggest factors that have contributed to the type 2 increase have really been the obesity epidemic; changes in lifestyle, more sedentary behavior, unhealthy diet, and then, really just all contributing to, obesity that we’re seeing in childhood.
And, even before type 2, there’s also been an increase in prediabetes. It’s estimated that one in every five adolescents will have prediabetes. There really has been a tremendous increase. With type 1, it’s been a little bit of a slower sort of slight incline, but the sort of contributions to that might be just the genetic predisposition. Obviously, if you have a family member with diabetes, you’re a little bit more likely to develop type 1 diabetes. There might be some environmental risk factors that are really hard to pin down, but just this sort of trend in the autoimmune disorder that we’re seeing with type 1.
SM: By and large, during childhood type 1 is the most common type of diabetes. When you think about the percentage among teens, I think it’s important to look at the population that you’re looking at. In some parts of the country, it’s going to be mostly type 1 and that’s true, across the board. I would say, though, that if you look at certain populations, like Native American kids, where you see much higher prevalence of type 2 diabetes, and if you’re looking at a very ethnic and racially diverse population, like we have in Baltimore, among older teens, we see more, we still see a lot of type 1, but you have increased rates of type 2in those populations. I think one thing that people also can get confused about is the genetics of it. So, for a child with type 2 diabetes, generally 75 to 100% of those kids have a 1st or 2nd degree relative with type 2 diabetes. Whereas with type 1 diabetes, we often get kids diagnosed with diabetes where families will say nobody in our family has it, right? And even if a parent has type 1 diabetes– it’s in the range of 5% chance that the child might get it. The genetics are complicated and play a role in both. As Dr. Wolf said the environment is a big part of why we think youth onset type 2 has been increasing. And that’s really complicated and can be difficult to change.
We try as much as we can not to put blame on anybody because much of it’s the built environment. All of us are walking less. All of us are eating more processed foods. If you look, when you go to the grocery store, the least expensive foods are the processed foods. How expensive is it to buy all those when you go to the salad bar? That’s more expensive than going and buying a cheeseburger. I think it’s very complicated. And when we see these kids, we try to take the blame out of the situation and see how we can work with them to see what personal goals we can set with them, what they can change in their lives as individuals.
RK: Yeah, I think it’s interesting what you both talked about that. This is a general societal trend, right? It affects people of all ages that increase in obesity, that decrease in physical activity. The accessibility of more processed foods, especially when finances might be limited. All of these things really impact risk at any age. But it is interesting that now we’re seeing that age of onset, especially for type 2 being pushed down even lower into those childhood years. What is the average age of onset for type 1 versus type 2 diabetes in children?
SM: Type 1 diabetes often happens during preschool years or adolescent teen years. Those are the two times that you often see. In youth onset type 2, it’s largely a phenomenon that’s seen during puberty. During puberty, our body makes growth hormone, which causes increased insulin resistance. It’s just physiologic-it’s a normal part of all of us growing up. And what that means is that our body makes insulin, but it is harder for that insulin to work. So whatever we eat, our body makes insulin and brings blood sugar back down to normal after it increases when we eat. So if you have insulin resistance, that insulin isn’t working as well. So your body tries to make more and more insulin to keep that blood sugar down.
We have a physiologic increase in insulin resistance during puberty. It’s never every single person, but by and large, this is a phenomenon we see as people start entering puberty. We’ve had kids as young as 8, but girls can start puberty at age 8 also. Puberty is the key part of it, usually it’s teenage years,
RK: That’s really interesting to hear about the spectrum that type 1 might be more of the preschool early adolescence and type 2 really in the adolescence late teen years.
Dr. Magge, you mentioned ethnic minorities as being populations where we’ve been seeing increasing numbers of type 2 diabetes, and you talked about insulin resistance as well. I know this has been a focus of some of your research. I wonder if you could just talk briefly about how that relates to body mass index or obesity in children. How is that measured in children? We know the cutoffs in adults. We talk about them often in terms of BMI of 25 to 29. 9 in the general population for overweight and 30 and above for obesity, maybe lower in Asians. But how do you define obesity in children?
SM: Kids are growing, and so we don’t have absolute cutoffs as they do in adults. For kids, we go by the BMI percentile. There are percentiles for age and sex. Most of your listeners out there are probably familiar when they take their child to the doctor, their pediatrician, they’ll be plotted on a growth chart. And there are good charts for height, for weight, and for BMI or body mass index. Generally, a normal BMI is between the 5th and 85th percentile, 85th to 95th is considered overweight. And greater than or equal to 95th is considered consistent with obesity. And, those terms, I tell families, sometimes they’ll hear these terms, and I don’t want them to feel labeled or stigmatized by them.They’re more epidemiologic terms. So that when you look at populations and various cutoffs, we can define what groups are at higher risk for medical complications. We even have a cutoff for what’s called severe obesity of greater than the 99th percentile. Or you can get more complicated about greater than the 120th percentile of the 95th percentile. It’s BMI percentile to answer your question, but BMI isn’t everything for sure. And in terms of type 2 diabetes, very much, just anecdotally, I will say that I many times have patients that I see who may not have as much excess weight as another patient, but their parents were diagnosed with diabetes in their 20s [or] 30s. Those kids show up with either prediabetes or diabetes much sooner and then sometimes I have kids that have a lot of excess weight, but they might be metabolically okay. So the genetics does play a role, environment plays a large role, and BMI is not a perfect measure. If you have somebody who is an athlete, a runner, a bodybuilder, they could have a lot of muscle mass that can throw off your BMI. And actually, when you mentioned my research, a lot of my research has to do with body composition and how different areas of fat accumulation can affect your risk. We know that some populations accumulate more fat inside, centrally around the belly and around your internal organs, which is considered to be more metabolically unhealthy compared to subcutaneous and lower fat around the thighs and such. Sometimes there are genetic predispositions, ethnic racial predispositions. So, all of that can play a part as well.
RK: It sounds like the risk factors for type 2 diabetes in children are very similar to those in adults, but perhaps defined in different ways. For obesity, looking at percentiles or where children might fall on their growth curve in respect to other children of their age. And also, the family history, ethnic minority status, physical inactivity. As an adult endocrinologist, these are things I often talk about with my patients as well. With type 1 diabetes though, Dr. Wolf, are there risk factors that parents would know about to look out for? You mentioned that not everyone, in fact most, may not have a relative with type 1 diabetes. What are the risk factors, in contrast, to type 2 diabetes that we might look for in type 1 diabetes
RW: If you have a family history of any autoimmune disorder, it could be something that you might think about as a risk factor for type 1 diabetes. Oftentimes we’ll see families where there’s a lot of people with thyroid disease or celiac. Any of these sorts of autoimmune disorders can be a risk factor for other autoimmune disorders like diabetes. That’s one thing to think about. Obviously having a family member or, we talked a little bit about not having a family member, but if you do have a family member, you are at increased risk and the risk is probably up to about 5% compared to, probably less than 1% in the general population.
There is now the first medication that has been approved to delay the onset of type 1 diabetes was FDA approved last year. Because of that, people are starting to look a little deeper into finding out when people are actually at risk for developing diabetes. There are several research studies or other statewide initiatives that if you have a family member with type 1 that you can screen other family members for the diabetes antibodies that might be present and indicate that you are at risk.
And then if you’re found out to have at least two of these antibodies. It means that you are your risk of developing type 1 actually in your lifetime approaches almost 100%. With that we know that having two antibodies for diabetes is a risk factor and it’s something that we actually will follow kits for just so that it’s not a sudden onset of clinical symptoms when type 1 diabetes does actually develop.
We call this an early stage of diabetes. We provide anticipatory guidance or advice to families of symptoms to look out for, which would be peeing a lot, drinking a lot. I always tell families to think about what about at night? You hear the child getting up in the middle of the night to go to the bathroom. Are they coming to you and asking for a drink in the night? Because that’s not typical. You might be eating more, but also losing weight or just seem a little bit more tired. And those are some of the symptoms that we guide families to think about and to look out for that we would know type 1 diabetes onset is imminent; that risk for autoimmunity, and having a family member, and then this opportunity now to actually get screened to find out if you’re at high risk. And in addition to the one FDA approved medication that potentially can delay the onset there are other clinical trials that are ongoing around the country. They are looking at other interventions to try to delay the onset, if not prevent the onset of type 1 diabetes.
RK: Thanks for going over those exciting trials and having that approval for early stages of type 1 diabetes over the past few years. It’s just so exciting. You did mention some of the symptoms, so thanks for going through those. The symptoms of diabetes tend to be similar, wouldn’t you say, between type 1 and type 2, but are there specific symptoms that in a child, parents should be thinking about that might be different than adults?
SM: I think as Dr. Wolf said they are, urinating excessively, drinking excessively, weight loss– those are similar.
I think a couple things are a little bit more problematic. For example, if you have a teenager who is overweight, and they’re trying to lose weight, but they’re drinking a lot, urinating a lot and losing weight, a family member might be happy that they’re losing weight, but it’s losing weight for the wrong reasons. They’re actually losing a lot of calories through their urine. So I would say that drinking a lot, urinating a lot is important to keep an eye out for. Dr. Wolf mentioned that, in type 1 you’re trying to avoid having children present really sick. There’s a condition called diabetic ketoacidosis where kids can get very sick and hospitalized, often in the intensive care unit for that. Whereas in adults, generally, they don’t really see that onset happening with type 2 diabetes. We do see that in youth onset type 2 diabetes, which kind of leads me to one of the big differences between type 2 diabetes in adults and in childhood. The most recent data has been somewhat frightening in that youth onset type 2 diabetes, glycemic control seems to deteriorate faster and children seem to develop complications quicker than in adults and can even have complications on diagnosis. That’s why when we diagnose kids with type 2 diabetes, we are quite aggressive with treatment. Sometimes I have parents saying “why is my daughter on more metformin than I am? ” And it’s for this reason, we want them to live a very long, happy, healthy life.
The “Today study” was the only clinical treatment trial for youth onset type 2 diabetes . We’ve been able to learn a tremendous amount regarding type 2 diabetes from that. One of the disturbing factors in their complications follow up was that as these kids grew up at an average age of about 26 years when they had diabetes on average for about 13 years, 60% of them had at least one complication, and 28% had at least two complications. That’s really significant, much worse and more rapid than we see an adults.
RK: Wow, that is certainly alarming! You know, even after 10 years of diabetes in adulthood, with proper preventative measures, we may not expect to see that high burden of complications. Do you think those numbers reflect not having that aggressive identification and treatment of diabetes early on? Or do you think there’s something about being diagnosed at a younger age that puts individuals at a greater risk of complications?
SM: I’m not sure that we know the answer because for the same duration of diabetes, youth onset type 2 seems to have more complications, not only than adult type 2, but also of pediatric type 1. We don’t know why, and that’s why there’s a lot of research going on in this area to find out.
It seems like the cells that make insulin, the beta cells, you have a deterioration of their function faster. So it seems to happen at a much more rapid rate during childhood. But we also wonder whether other things could come into play, like social determinants of health, systemic racism, poverty, all these things, because youth onset type 2 diabetes not only disproportionately affects our ethnic and racial minorities, it also disproportionately affects kids of all ethnic and racial backgrounds who have socioeconomic stressors. Some of the research that we’re doing now is having to do with social determinants of health and how they can impact your physical health and might play a role. It’s a question that we don’t really know the answer to.
RK: It sounds like irrespective of the type of diabetes in childhood, the risk of complications is really the primary driver of why we focus on identifying and treating so soon, and that’s a very high-risk population to begin with. Dr. Wolf, you talked a little bit about antibodies and testing, and I wonder if you could go into a bit more detail about how we diagnose diabetes in general, and what additional tests might be done to differentiate type 1 diabetes from type 2 diabetes in children.
RW: Type 1 diabetes is typically diagnosed when a child presents with clinical symptoms, and it’s usually made with onset of symptoms, and those symptoms we talked about urinating more frequently, being more thirsty, losing weight, but eating more, and at that time that would generally prompt a physician or provider to check the child’s blood sugar. If the blood sugar is elevated, then it might indicate that there is diabetes. The other tests that we typically do are something called the “hemoglobin a1c,” which is essentially a measure of your average blood sugar over the last 3 months, and it gives you an indication of what that is. An A1C level that’s over 6. 5% is diagnostic of diabetes. Both type 1 and type 2 use the same cut off. That’s typically the tests that are done when somebody is newly diagnosed with type 1, or you suspect that there might be type 1 diabetes. We do other tests at the time of diagnosis to screen for other autoimmune disorders to see. One of the things that we can use to help us – a great example of an adolescent who’s overweight, who’s presenting with diabetes and sometimes it’s not really clear whether they have type 1 or type 2. Typically, the symptoms of type 1 are usually happening more acutely, meaning that they happen, and then deterioration is more rapid, whereas with type 2 diabetes, sometimes it can be a very long-standing slow process but it’s hard for people to recognize those symptoms. One of the tools that we have to help distinguish between type 1 and type 2 are these diabetes antibodies that I mentioned earlier. They are typically present in type 1 diabetes, and there are 4 that we can send as a lab test and do when somebody is diagnosed. It is possible to have type 1 diabetes and not have any antibodies and that makes up about 10 – 20% of the type 1 diabetes population. And the flip side is also true that you could be somebody with type 2 diabetes, and about 10 – 20% of them will have some very mildly elevated or abnormal type 1 diabetes antibodies. So that makes it a little bit complicated, but we generally use these antibodies to help guide us to distinguish between somebody with type 1 and type 2, particularly if it’s an adolescent, which is when it becomes a little bit trickier to figure out. Usually, younger kids [who are] pre-pubertal are going to be type 1 and it’s not an ambiguous thing to determine at that point.
SM: Also, since 20% of children are overweight or have obesity, and we know that type 1 childhood diabetes is much more likely to be type 1 than type 2. You are going to have many kids with type 1 that just happen to have excess weight as well.
RK: It certainly sounds like it can be challenging to make the diagnosis of which type 1 versus type 2. In adults, we are recognizing that type 2 diabetes is the most common, that type 1 diabetes can also be seen. And as you mentioned, Dr. Wolf, sometimes it’s not as acute as it is in children; they may not present with that complication ketoacidosis right away. But it’s interesting that in childhood, from what I’m hearing, it sounds like it can be quite a focus to try and figure out whether it’s type 1 or type 2, especially with this rise in type 2 diabetes that’s being seen in childhood and that sounds like it’s an important point both for families to be aware of and also health care providers to be aware of that really the symptoms and the signs can be confusing and it may perhaps take a few visits, wouldn’t you say, or it might take a little bit to to figure out which one it is.
RW: Sometimes it takes us a little bit of time away for the antibodies to come back. Sometimes we’ll also monitor what the insulin requirements are. If the lab results are indeterminate for the antibodies, sometimes it just means that we have to look at how much insulin somebody is using and needing to maintain blood sugars in the goal that we set. That is really established by the American Diabetes Association and the Pediatric Endocrine Society for what we want our goals to be. Needing a lot of insulin won’t even help us figure it out. But if you need less insulin, sometimes it can help us determine which one it is. But it still can be challenging.
SM: And I will say that because type 1 diabetes is not only more common, but those kids need insulin to survive. So, if we have somebody in the hospital who’s sick, we treat them as if they have type 1, and then if it becomes, the labs come back, and it becomes clear they don’t, it’s an easy kind of transition. But we wouldn’t want to do the reverse, and not treat somebody with insulin when they need it.
RK: Yeah, that makes a lot of sense. You talked about treatment, and I wonder if this would be a good juncture to kind of shift to talk about what are the treatment targets in terms of glucose goals and both type 1 and type 2 diabetes. Are they the same or different? Then the medications we know the medications that are used or are similar, but as mentioned, type 1 tends to be insulin and type 2, there may be other options. So, I wonder if you could talk a little bit about treatments for type 1 diabetes and then type 2 diabetes.
RW: For type 1 diabetes, the treatment is insulin, and you really cannot survive without taking insulin. Insulin is generally provided as an injection. When children are newly diagnosed, they’re usually doing that with shots that they have to do generally four to five times a day, sometimes more. The only way that we can give insulin is as a subcutaneous injection. That would be something that you can do at home.
We do have insulin pumps, which are a small device that holds a cartridge of insulin and can be programmed to deliver insulin. As a substitute for doing shots every day, you can put a pump on and then tell the pump to deliver the insulin the same four to five times a day that you would do with an injection. A lot of our children choose to do this because it’s a lot easier to put a pump on and change your pump site every three days. It’s one needle every three days as opposed to five a day. So many will choose to do that. Then the other component of the diabetes management is glucose monitoring. At minimum, you need to know what your blood sugars are at least five times a day- before every meal, bedtime, and often in the middle of the night. We recommend checking to make sure that the blood sugar is not going low. Checking a blood sugar takes a few minutes when you’re using a meter and a little test strip and, pricking your finger. So, we also have continuous glucose monitors, which are very small devices that have a very tiny wire, the breath of two hairs, that sits under the skin and gives a reading of the subcutaneous blood sugar. Those machines, the continuous glucose monitors, can read out a blood sugar every one to five minutes, depending on the brand of device that you’re using. This allows continuous monitoring and measurement of blood sugars to help guide the insulin treatment and help us keep our children in the goal blood sugar range, which is set to be between 70 and 180 (mg/dL) for the target goal blood sugars for the day. It is possible that people will have blood sugars below that and above that, but our general recommendation is that we try to achieve about a 70% time and range between that 70 and 180 (mg/dL).
That’s not possible for everybody and it can be challenging to reach that goal. It’s easier if you use a hybrid closed loop or automated insulin delivery system, which means that your CGM and your pump talk to each other and the pump insulin delivery will automate adjustments to the insulin delivery, which can help you achieve a time and range close to 70% or greater. But if you’re on injections, sometimes it’s more achievable to reach a minimum of 50% time in range. But those are the goals that we set because the goal is to try to keep the A1c below 7% for children with type 1 diabetes, because we know that if we do that, we can prevent the complications of diabetes, which, include eye disease that can lead to vision loss and blindness; neuropathy, which is nerve dysfunction, so you don’t really feel things as well as you should; as well as kidney disease. Those are some of the most common, what we call microvascular complications of diabetes and we want to prevent that. We don’t want any of our kids to end up with any of these complications. So, we as a diabetes team, work very hard to help our families achieve the goals set forth really by the American Diabetes Association to try to keep the time in range at the goals that we would like.
SM: And I would just echo, when Dr. Wolf talked about some of these technologies, they’ve really been game changers for families with type 1 diabetes. For example, the glucose sensors, oftentimes I would hear stories of parents would be up all night checking their child’s blood sugar because they were afraid that they would go low and have a seizure. And when I was a fellow, we’d get calls about somebody heard rattling, and they went and ran into the room and the child had a seizure. Having a monitor that’s going to alarm has allowed many families to get a lot more sleep and improve quality of life significantly. So, the technologies that Dr. Wolf mentioned are really life altering, I think, for our families, because having type 1 diabetes really is a big adjustment for everyone. In terms of treatment for type 2 diabetes, it depends, at what point they present themselves to medical attention. As Dr. Wolfe said, our target is to keep the A1C less than 7%. But I try to, if possible, eventually get it even much lower than that, or as close to normal as possible, because we know that beta cell function seems to deteriorate quickly, and we want them to live a long and happy, healthy life. And in addition to those microvascular complications, we worry about things like stroke and heart attack in the future. If you think about somebody having type 2 diabetes as a 70-year-old and when they’re going to have complications, if I have a 10-year-old patient with type 2 diabetes, are they going to have a heart attack in their 30s? We don’t want that to happen. So, we are quite aggressive. If somebody presents with an A1c that’s quite high, like over 8. 59%, we will often start insulin first. That is to quickly bring down the blood sugar. We also, at that point, might not know whether they have type 1 or type 2 and quickly bring down the blood sugar because having high blood sugars also has a toxic effect on some of the different metabolites in the body. And we allow the beta cells, the cells that make insulin to get a rest. But then we know, if somebody presents with a lower hemoglobin A1c in that setting, we often will start the first line medication. First line medication for obesity, prediabetes and type 2 diabetes is lifestyle management. So, exercise, nutrition, healthy diet, but for children with type 2 diabetes, we do start them all on metformin. We automatically will start even if the child’s A1c is 7%. So as Dr. Wolf said, it’s 6. 5(%) and above that’s considered diabetes. And even if it’s 6. 8%, we start metformin. That’s the first line. It’s a medication that’s been around for a long time. Other medications we also have, if we need to, let’s say that we’re not getting optimal control with metformin, we now have some exciting new medications that we can use. The GLP 1 receptor agonist medications that people may have heard of for in adults, talk about Ozempic and all these different things. For kids, there are fewer medications that have been approved. But liraglutide or Victoza has been approved for youth onset type 2 diabetes if you are 12 or older. And the same thing with dulaglutide or trade name is Trulicity, also approved for 12 and older. And then in addition, we have another class, the SGLT2 inhibitors, that’s empagliflozin or Jardiance can be used in type 2 also. This is super exciting because when liraglutide was first approved in childhood it was I think 2019, prior to that, the only treatment that was FDA approved for youth onset type 2 diabetes was metformin and insulin.
And all these medications you would see for the adult forms of diabetes, they were not approved in kids. Having these GLP1 receptor agonists are also small injections, but they are either once a day or once a week. And then the empagliflozin is oral. Having these other options can really make a big difference for these kids.
RK: It’s just so amazing to hear how much technology has revolutionized really the treatment, especially in children who need multiple injections of insulin, such as in type 1 diabetes, and then for type 2 diabetes, just having all those other options that perhaps on the adult side, we’re used to having. But now having the availability of more than one or two classes of drugs for type 2 diabetes really seems to be something that will contribute to being able to address this rising number of children with diabetes. What more do you think is needed? Both of you have spent a lot of time in this field. You’ve seen a lot of children with diabetes. This, I expect, is going to continue. The numbers are going to continue. What more do you think needs to be done? We haven’t talked about the role of caregivers or family members. I wonder if you might want to touch upon that as well.
SM: Before we get there, I just do want to also put in a plug for the fact that we really need advocacy to increase accessibility of some of those medications that I mentioned to our patients, to children, because those GLP1 receptor agonists, those medications like Victoza and Trulicity are very expensive. And insurance companies put a lot of restrictions on using them. Often, they get rejected for kids with prediabetes or before they get diabetes. Sometimes it feels like you’re almost waiting for them to get diabetes. Then sometimes we can’t start them on children unless they’re on insulin already, or some other restrictions. I think these are all things that we want to avoid and avoid disparities in care amongst our kids.
RW: With all childhood chronic diseases, I think the family unit is really important and having a lot of support in managing this – diabetes is a burdensome disease. There’s a lot of things you have to do every day in terms of monitoring and taking medications, and it’s not something that any child can do alone. I think it’s really important that caregivers in the home are supportive and helpful. It may not be that they need to do anything. It might be a teenager can do everything themselves, but having a little bit of support or oversight could really go a long way. And sometimes even just some gentle reminders about the things that need to be done. I think also, in general, and maybe more particularly for type 2, we often will recommend lifestyle modifications, changes in the diet, and I think it’s really important that this is something that the whole household embraces. And it’s not just something that one child has to do, because it’s really hard to be a kid and, not eat something specific that the rest of your family is eating just because you have a condition that says you can’t.
I’ll just clarify that in type 1 diabetes, we don’t really say you can’t have something, we just say you should just make sure you take insulin with it. But, we do generally recommend avoiding a lot of excess sweets, especially in type 2 diabetes. And we don’t want it to be that one child allowed to have it, but the other sibling is allowed to. We have to be very thoughtful about that. As Dr. Magge alluded to, making sure that everybody is getting rest, everybody feels supported. So, these CGMs (Continuous Glucose Monitors), have helped a lot in that realm, because by having a device that’s going to alert you if the blood sugar is going low or too high, then at least you can get some rest.
I think, obviously, that’s an important thing, because it’s a marathon, it’s not a sprint. This is the thing that is going to be continuous day in and day out and making sure that you set up a good framework for managing it in the home, helping the school, making sure things are settled and comfortable at school is also really important, because you don’t want any sort of specific environment to be stressful for the kids. Even in summer camps, there are camps for children with diabetes, so that they can go and have normal camp experiences while there’s a medical team to help manage the diabetes and they can take a little bit of a break. It’s an all-in for everybody in order to feel supported throughout.
SM: It’s also as Dr. Wolf said, it’s a lot for a family because even with the new technologies, when somebody has a closed loop system, it’s a advantage that they can get those frequent blood sugars through their CGM. But the family members, like the parent might be at home following remotely the child’s blood sugars and the child’s at school and they might see that they’re going really high or they’re going low and they’re nervous. And so it’s important to have good communication between the medical team, the school nurse, the parents, in terms of what’s going on and the childtoo, depending on the age of the child, of course, because we have some very young, preschool age kids who obviously can’t play as big a part in their care.
RK: Yeah, thanks so much for talking about the role of the family and the caregivers. It really does take a team, especially when it’s a child who’s with a chronic condition such as diabetes. You mentioned the school as well and some of the advocacy that is important to continue to ensure that children get access to the medications they need. What about access to services at school? I wonder if you could talk a little bit about that for children with type 1 diabetes that might need frequent insulin injections and monitoring. And then even for type 2 diabetes, I feel like I’ve seen physical activity become less and less unfortunately, emphasized during the school day. So, I wonder if you could talk a little bit about the school environment in contributing to what we’re seeing in terms of the rise of diabetes in children.
RW: I’ll start by just mentioning that any child that’s in a public school and has a condition like diabetes, the school is actually required to provide some onsite nursing services because somebody does need to supervise the insulin administration. This is really important for young kids, preschool, kindergarten, lower school age, elementary school age children, obviously, as the kids get a little bit older and more independent when they’re in high school. Sometimes they can do things on their own. But I think the partnership between the parents, the school nurse and the medical team is actually really important and really can make a very big difference.
I know that our team has done a lot of work with school nurses. The technologies, as we said, are changing all the time and there [are] new pumps out every few months. Just in general, the fact that we now have these, hybrid, closed-loop systems is different than what we were using 3 to 4 years ago. So there’s definitely been a big learning curve for everybody involved and making sure that everybody is informed on how to use the technologies. And we definitely play a large part in that. But making sure that there’s a team approach really from everybody. One- it makes it safe for the child, but also, definitely more feasible and comfortable, but there’s also a partnership and, the school nurse can help if there’s a need to provide additional support in the school day, they can actually do that because there are constant every day for all those meals that they’re eating in school, whether that be breakfast and lunch and checking in at gym. So there is some, routine and consistency to that can be very helpful also to the child as well as to the medical team. I think it’s important also for parents to work directly with the school nursing staff because, they’re in the ones who are going to be the first call when something’s a mess, sometimes even before they call the medical team.
I think it’s a really important relationship to establish up front. And if there are any gaps in knowledge, obviously reaching out to the medical team to help fill those gaps and everybody feels comfortable and on the same page.
SM: I would say, about the decreasing physical activity in schools, definitely we’ve seen that. For anybody with excess weight it’s a challenge. To remain physically active, we recommend at least an hour a day of what’s called moderate to vigorous physical activity. And for some kids, their main source of physical activity is at school and they would talk about PE (physical education). If they don’t have that, it is not ideal. So we try to work with families to see what they could potentially do in their own environment, but it can be difficult. We can’t tell somebody to go play outside if it’s not safe to be outside. So, I think, meeting a family where they are is important. And the other thing is in terms of family interactions with type 2 diabetes, often children, if they have excess weight, they may also be very tall and they may look older than they are. It’s important to remember that this is still a child with the maturity of a child. And sometimes teens don’t want to do what they’re supposed to do. So we’ve partnered with school nurses to help make sure that kids are taking their medication by having the school nurse checking on them or help them check their blood sugar before lunch or see if they can help with medication adherence because there are times where, families can have a tough time with if it’s a single parent household and the parent is at work, they may not be there to supervise. They might not be able to be there to supervise medication. So, partnering with the school can be helpful as well.
RK: It sounds like education is just so key. In terms of the partnership with the school, the partnership with the medical team and then family education as well. It’s an ongoing process and there are certainly things that can be done to enhance the care of people with diabetes, children with diabetes at the school, but also, as you mentioned, things that might be limitations that need to be addressed as well during the health care visit.
We talked a bit about complications, and I don’t think we need to go into great detail about them as I think they’re pretty common also with adults with diabetes. I think it might be of interest to our listeners to hear about, do children with diabetes develop complications in childhood? We think about longer duration, the longer you have diabetes, the more likely you are to have complications that Dr. Magge, you mentioned the study where even in the mid-twenties people who’d had diabetes for 13 years had complications. Can children actually in childhood have complications? And which ones do you see in your practice?
SM: Yeah, we do sometimes see complications. Sometimes youth onset type 2 kids can have some of these microvascular complications even at diagnosis. So, seeing some kids with retinopathy, we have seen kids develop nephropathy or protein in their urine. Obviously as a complication, it’s further down the road. Oftentimes they might present with this after they’ve transitioned toward a middle provider, but we sometimes see the starts of complications as well during childhood.
RW: I think overall, it is unlikely that children will develop these complications, particularly for type 1 diabetes with the improvements and technologies and advancements in diabetes management that we’ve had over the last decade. And, really, we can see that the hemoglobin A1C level, which is a measure that we use to guide, glycemic control and where, meeting those targets .We’ve seen a decline in the last few years, particularly with the advent of these newer technologies, such that , in the teenagers, the average A1C is not generally a goal, actually fewer than 20% actually meet that goal, but we’re seeing people getting closer to that with the use of these technologies. So, the hope is that with continued improvements in management, that we can delay or prevent the onset of complications.
I think as Dr. Magge mentioned, in the type 2 population, we’re more likely to see them at a younger age, and that’s definitely why we worry more about them. That’s why there are screening guidelines in place that say that we should be; for type 2 screening from the time of diagnosis and on a yearly basis. And for type 1 from the time of diagnosis, usually after about three to five years, you start to screen for all of these potential complications. We’re happy to see that we don’t see too many of them, but some of the more recent reports do suggest that really by mid, 20s, 25, 26 years old, if you’ve had diabetes for more than 12 years, there is a risk of having some of these complications. The more that we can do in the younger years to help improve glycemic control, hopefully we can prevent that.
RK: It is encouraging to hear that technology has really helped, perhaps with that management of glucose levels and diabetes in children and really helped give some rest to parents and caregivers as well. Dr. Wolf, I wonder if you want to briefly talk about some of the work you’re doing looking at the use of technology in screening for complications such as retinopathy.
RW: We are the first pediatric diabetes center to use something called “autonomous AI” for diabetic retinopathy screening. That is an artificial intelligence software system that can view images that we take of the retina, of the back of the eye. And make a decision, so it’s autonomous. It makes its own decision without oversight, to say whether the patient has diabetic retinopathy or not. So, this is something that we do at the point of care. Actually, at a clinic visit, it takes about five minutes. We take four pictures of the eye and the camera doesn’t touch you. It just takes two pictures of each eye. We run those images through an algorithm and then it says the patient has diabetic retinopathy or the patient does not have diabetic retinopathy.
And that suffices to take care of that diabetic eye exam that patients historically had to go to an eye doctor to do. Of course, there are some people who should still go see an eye doctor, especially if you wear glasses, but if you just need it done because you have diabetes, it’s the kind of thing that we can now do at the point of care. And we have done a lot of work in this area to show that has good diagnostic accuracy. We’ve also demonstrated that it improves access to completing and getting your screening done. Compared to saying, “please go see your eye doctor” and, it’s another visit on top of your quarterly visits with your diabetes team. That’s a big ask for people to do because it’s another day off from school and work. So, this has been really instrumental in helping us make sure that all of our kids are getting screened for complications. We’re currently looking at whether the use of this technology can also mitigate disparities in screening because we know historically that our minority youth are less likely to get their screenings done, and we want to see if we can close that gap with use of this technology. So that’s some of the work that we’re doing with autonomous artificial intelligence. We’ve also done a lot of work looking at the use of CGMs, pumps, and hybrid closed-loop systems in our population, again, looking to see whether this can close care gaps that exist for our minority youth in our population here in Baltimore.
RK: That sounds so exciting, and it sounds like there’s many more technological developments to come, and I’m sure we’ll continue to see even more technology integrated, not only into the monitoring, but it sounds like even the screening of complications in children, which is very exciting.
I wonder in closing, if you both might have some parting words for our listeners who either are parents of children who might be concerned that their child has diabetes or are parents of children who have diabetes, who might be struggling or really getting used to having a child with this disease. What would you say to them? What advice would you offer to them? And what resources would you suggest might be helpful?
RW: Let me start with type 1. So there are a tremendous amount of resources and community supports out there for families of youth with diabetes. And, the younger kids, when your child is diagnosed and they’re under five, it really can be very challenging especially if they’re one, two, three years old. And there are a lot of resources, one through the Juvenile Diabetes Research Foundation, now known as JDRF. Through the American Diabetes Association there are a lot of family groups that provides support and support groups that actually are out in the community. I would really encourage people to access these resources because I think having a community is really important when you have diabetes. It’s not only important for parents of kids, but it’s also really important for our teenagers to know that there are other kids like them that also are having to face the same things that they have to do every day, in addition to their regular lives. And I think looking for these supports and leaning on them can be very helpful for families.
SM: And I would say, similarly for children with type 2 diabetes, you can do this. We can really partner with you. I think there are a lot of exciting new treatments that we can use to really control blood sugars and bring them down hopefully to almost normal. So that we try to do the best we can to ensure that our kids live very long, happy, healthy lives and do everything that they want to do.
I would just encourage people to partner with your doctor, talk about any limitations you have, don’t be embarrassed about anything. If there are issues, you don’t have access to certain things, we can help. And our clinics for both type 1 and type 2 diabetes, we have multidisciplinary teams with nutritionists, behavioral health, diabetes educators, social workers, because we really do partner with the family as a whole to try to help them where they are. Sometimes it might be that the doctor is the least important person that needs to see a patient at a particular visit, because it might be the social worker that’s going to help that family get their electricity turned back on or something else. So, I think working together as a team is so important.
RK: Thank you so much, Dr. Wolf and Dr. Magge for being on our podcast today and sharing your expertise on this growing burden of diabetes in children, both type 1 and type 2 diabetes, your perspectives on partnering with not only the families and the parents, but also the school system and everything that you do to champion and advocate on behalf of your children.
Thank you so much for being here today.
SM: Thank you for inviting us.
RW: Thank you.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org
We love to hear from our listeners. The email address is [email protected].
Thanks for listening. Be well and see you next time.
In Episode 39, Dr. Kalyani welcomes a person with diabetes, Joanna, who will be sharing her journey, not only living with diabetes but also her journey focused on her experience living with cystic fibrosis, along with diabetes. Along with Joanna, we are pleased to welcome Dr. Aniket Sidhaye, an expert on cystic fibrosis-related diabetes. Dr. Sidhaye is an associate professor of medicine and pediatrics at the Johns Hopkins University School of Medicine. His specific clinical interests are cystic fibrosis-related endocrine disorders, type 1 diabetes, particularly emerging in emerging adults with diabetes, thyroid disorders, metabolic bone disease, and management of hospitalized persons with diabetes. Dr. Sidhaye earned his MD from Northwestern University’s Feinberg School of Medicine. He completed his residency at Northwestern University as well. He performed a research fellowship in endocrinology and metabolism at Northwestern University and also performed fellowships in endocrinology and metabolism at Johns Hopkins. In addition, he is a committed educator serving as an advisor in the medical school, co-director for the endocrine course for preclinical medical students, and director of the Johns Hopkins Endocrinology, Diabetes & Metabolism fellowship training program.
PODCAST 39: Cystic Fibrosis-Related Diabetes
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani at Johns Hopkins. We developed this podcast as a companion to our patient guide to diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org.
For today’s podcast, it is my pleasure to introduce a person with diabetes, Joanna, who will be sharing her journey, not only living with diabetes but also her journey focused on her experience living with cystic fibrosis (CF), along with diabetes. Along with Joanna, we are pleased to welcome Dr. Aniket Sidhaye, an expert on cystic fibrosis-related diabetes (CFRD).
Dr. Sidhaye is an associate professor of medicine and pediatrics at the Johns Hopkins University School of Medicine. His specific clinical interests are cystic fibrosis-related endocrine disorders, type one diabetes, particularly emerging in emerging adults with diabetes, thyroid disorders, metabolic bone disease, and management of hospitalized persons with diabetes.
Dr. Sidhaye earns his MD from Northwestern University’s Feinberg School of Medicine. He completed his residency at Northwestern University as well. He performed a research fellowship in endocrinology and metabolism at Northwestern University and also performed fellowships in endocrinology and metabolism at Johns Hopkins. In addition, he is a committed educator serving as an advisor in the medical school, co-director for the endocrine course for preclinical medical students, and program director for our endocrine fellowship. Welcome, Joanna, and Dr. Sidhaye.
Joanna, a person with CFRD: Thank you.
Dr. Aniket Sidhaye, MD: Thank you, Dr. Kalyani, for inviting us to do this, and especially thank you to Joanna for spending time with us today. I thought I would begin just by explaining what cystic fibrosis is—cystic fibrosis is a genetic condition that affects about 35,000 people here in the United States of America. It is a condition that is caused by a defect in a molecule that’s very important for maintaining water and electrolyte balance in the body, and it affects many different parts of the body, but in particular, it affects the lungs, and that is what causes the most problems for patients. But it also affects the pancreas.
Interestingly, it affects the part of the pancreas that is responsible for helping us digest foods properly; people often have malabsorption. But as part of the damage that is occurring to the pancreas, the part of the pancreas that’s responsible for making insulin is also damaged. So it turns out that people with cystic fibrosis are at a higher risk for developing diabetes.
In fact, for people with cystic fibrosis above the age of 30, about a quarter of them are affected by diabetes. In addition to a lot of the burden of taking care of cystic fibrosis, which you’re going to hear about from Joanna, diabetes is also something that many patients have to contend with.
So I thought here it would be good to turn it over to you, Joanna, and hear about your journey with diabetes and with CF.
J: Yeah, thanks for having me. I was born with CF. When I was first born, my parents had never heard of cystic fibrosis. So, they didn’t really know much about what was going on. I was born in 1976, and back then they didn’t screen newborns at that time for cystic fibrosis. And my mom knew that there was something wrong, but she wasn’t really sure what. I was her first child. She was a new mom, just not really sure what to do [or] what was normal for a newborn. My mom had taken me to the pediatrician, and the pediatrician said, “I think she has asthma, and she probably just has a lot of food allergies, and that’s why she’s not gaining weight.” That was what my parents were told. Then my sister was born 13 months after me. My sister Noelle was born with a lot of complications at the time, and they tested her for cystic fibrosis. She was actually diagnosed before I was, and then they diagnosed me. And my parents knew that Joanna had CF. So that’s how I found out I had CF—I was one when I was diagnosed. I have two other brothers and sisters who don’t have CF, and we lived a pretty normal life.
My parents tried to get us more physically active. That was a big thing, trying to get us to do more for our lung function, so we always were trying to do sports and things like that, especially in high school and in college.
My sister had a lot more complications than I did, and she did pass away from CF in 1996. She was waiting for a lung transplant. It’s a very devastating disease, and it’s very taxing. My sister was diagnosed with diabetes before I was. I knew that the classic symptoms when she had it—she was very thirsty and hungry, and they tested her, and she had diabetes.
Then it wasn’t until a couple years [later] I was in college when I got diagnosed. I think there was some time that they weren’t sure. I don’t know because I didn’t see what my glucose numbers were, but I knew I had tendencies, but I wasn’t really told I had diabetes for a long time. I went through stages where—if they think it’s not a big deal, I’m not going to think it’s a big deal. I remember right before I went off to college, they told me, “Just watch what you eat.” That was it, that was all they told me. They just said, “Watch what you eat.” I did have a glucose meter in college. I remember every time I tested my sugar, it was high. But I don’t know; they don’t really think it’s a big deal. It wasn’t until I was home for one summer and I was taking a summer class, and I was extremely hungry. I was having blurry vision, and I had just had a CF tune-up—that’s what we call when you go into the hospital for IV antibiotics. I would go in every year just to pump myself up for my lung function. And I remember I went in, and I was seeing a new pulmonologist. I had just had this tune-up, and I went in for a visit, and he said, “So how are you feeling?” And I said, “I don’t know. I don’t feel great, but I don’t know what’s wrong.” He says, “Let’s go get some blood work done today.” He made me wait around for the blood work. And he said, “Your blood sugar is in the three hundreds, and your A1C is 12.” So he made me go to an endocrinologist that day.
But before this, I did have tendencies. They did try to put me on a sulfonylurea, and I didn’t do really well with it, [so] I just stopped taking it. And I thought—I have a new doctor; he doesn’t know that this is a problem for me; I’m just hoping it goes away. So that’s how I started with the diabetes, with the CF
AS: Yeah. Thanks for sharing. I think your story highlights so many things that are challenging. First and foremost, CF is a condition where there have been really remarkable changes. Where 50 years ago, most people with CF did not live into adulthood. When I was in training or when Dr. Kalyani was in training, people had started to live into their early twenties. And now in North America, the average lifespan is just above 50 years of age. There have been transformative changes. But I think many years ago it was not so well recognized how common cystic fibrosis-related diabetes is.
But when initial studies started to be done, people realized that right before people get diagnosed, there’s actually a drop off in lung function and people’s weight goes down. They start to feel and do more poorly, and diabetes is a risk factor for bad outcomes in people with CF. Because of that, now there are screening programs where everybody above the age of 10 who has CF is supposed to get a screening test for diabetes.
Usually that consists of something called an oral glucose tolerance test. You mentioned the hemoglobin A1C; yours was very high. Probably many people listening to this podcast will know that an A1C above 6.5 percent constitutes a diagnosis of diabetes, but [for] many people with CF early on, their A1Cs are not that abnormal. And I wonder if maybe that was the case with you, but if they had done the oral glucose tolerance test, they would have seen just how much abnormal glucose there were.
I think the other thing is [that] we think of cystic fibrosis-related diabetes as a condition that really requires insulin to be treated because of the damage to the pancreas. The amount of insulin production is really very low. And so medicines like you described—sulfonylurea, which is a medication that tries to get the pancreas to make more insulin on its own—end up being not so effective. I think nowadays, based on publications and guidelines and research, most people start with insulin because they know that helps people. I would be interested to know once you did get started on insulin, or if you got started on insulin right away, how you did feel.
J: I did. I started on insulin that day, and I remember they made me come back the next day to talk a little bit more about how to dose the insulin, and we went over diet information. I remember at the time I felt like it was a manageable part of my health. I felt like it was a game. I know that sounds really weird, but I thought, “Oh, let’s see if I pair my insulin with what I’m eating. Let’s see if I did a good job.”
And for me, it was fun. I thought it was really fun. I don’t know if I’m normal or not, but for me, I thought it was really neat how I could take my insulin and I could bring my sugar down based on what I was eating. So, for me, I thought that was really a neat thing because with CF, you don’t always have control. I felt like with diabetes, there was a little bit more control that I could make an impact with my blood sugars.
AS: Yeah, that’s an interesting perspective. Many people with CF that I’ve spoken with find the diagnosis of diabetes just to be such a burden because you’re already describing having to dose insulin with every meal that you eat. I wonder for the audience; it might be good for them to hear about what it took at that time. I know there’ve been lots of changes more recently, but at that time when you were diagnosed, what did you have to do to take care of your CF? Because taking care of the diabetes was now on top of that.
J: I was in college at the time, so that is a hard time to get diagnosed with diabetes. Plus, I had CF. I did the best I could. I went to a small college where I was playing sports. So, I didn’t go to a big school where maybe I couldn’t play a sport, but I went to a school where I was playing field hockey. It forced me to run and do more physical activity, and that I think really helped me. I think from a lung perspective, it helped me stay healthy throughout the year. So, when I was away from home, I feel like the physical activity helped me with that.
I did have to do chest PT a couple times a day. I had a vest that I took with me to college, and I didn’t really do nebulizers at the time, but I took pancreatic enzymes, and I had to take my insulin, and I was on NPH (Neutral Protamine Hagedorn) insulin and Lizpro; that’s what I was on at the time.
But I felt for me, the CF was there, and as long as I just did my tune-ups, and I did my therapy. I’ll be honest with you; I was a typical college kid; I didn’t always do my therapy all the time. But I was lucky that I didn’t have a problem with that, and it wasn’t until I got older that the CF lung disease became more of a problem for me as I got older, but when I was younger, I could get away with it a little bit because I think I was more physically active.
AS: Yeah, no physical activities—very important for CF and for diabetes, it turns out. But I think it is important to note that many people have to do chest physical therapy, which involves not a small amount of time, multiple times a day. They might have to do certain types of nebulizer treatments where they’re taking in a medication and inhaling a medication again, multiple times a day. It sounds like you and maybe your family have tried to make the best of the situation so you could also handle the diabetes, but to layer on taking multiple injections of insulin is indeed quite a lot of work. For all the people that do it, they’re really to be commended because it is something. that, as providers, we have to be cognizant of the mental health aspect that goes along with that. How did you feel after taking insulin? Did you notice if it made you feel any better?
J: I did feel better: my vision got better, and I wasn’t as tired. I definitely feel like it was helping me with my energy level, and I felt better. When I graduated from college, when I first started working, that was really tough too, because [of] the demands of my health and also working—I wasn’t used to that. And I didn’t have my mom and dad looking over my shoulder so much. But, I just remember, as diabetes has progressed over the years, just simple things like using an insulin pen was so much easier than using a vial. I remember talking to my endocrinologist, and I’m like, “It’s such a pain in the neck, these vials.” We have pens now; that was easier. And then, years later, I did go on to an insulin pump as well. There are some things I think with the diabetes that have made my life easier to manage. It is another burden with my health, but I do think that there have been some things that have helped people live a better life with diabetes.
RK: Joanna, I really appreciate you sharing your story about the interplay between the CF and the lung health and the diabetes, which is related to it. It’s interesting—we talk a lot about type one and type two diabetes. I think for many people listening, perhaps they’re not familiar with the idea that you can have diabetes as a result of another condition for [example], in your case, diabetes related to the cystic fibrosis. I’m curious; what did your doctors tell you? Did they have a hard time defining the kind of diabetes you had, and what did you tell people when you had to share your diagnosis? Were they trying to categorize you into type one or type two, or did you find that you have to explain the kind of diabetes you have?
J: I always knew that it was not type one; it wasn’t type two; it was somewhere in the middle. And I struggled with that too, a little bit like—I take insulin, but I’m not type one; it’s not autoimmune, so I did struggle with that. I had some friends that didn’t quite understand what type of diabetes I had; they knew I had diabetes. I remember one time I was on the van when we were going to a game when I was in college, and I was having low blood sugars, and one of my friends said, “Give her insulin!” and I’m like, “No, don’t give me my insulin now! I don’t need my insulin right now.” So I think my friends were very concerned because they didn’t quite understand what type of diabetes I had, but they knew I had CF, and they knew there was a lot to that. I think I struggled with that. I don’t know if my doctors really gave me a good explanation of really what was causing it, and I struggled with that a little bit too. Why do I have diabetes? I knew my pancreas was involved, and I didn’t always know—was it because my pancreas just wasn’t working? Was it scarring? What was the problem? I didn’t really understand it.
AS: What’s interesting from a historical perspective is [that] although we associate cystic fibrosis with a lung disease, and indeed that’s the reason that most patients really suffer—the lung disease. Cystic fibrosis actually refers to cystic fibrosis of the pancreas. And so, the person who really discovered cystic fibrosis was a woman named Dorothy Anderson, who was a pathologist at Columbia at the time, and I only mentioned her because she was a graduate of the Johns Hopkins University School of Medicine, [and] this podcast is hosted at Hopkins. But it really was these cysts that formed in the pancreas, and then the scarring that occurs in the pancreas that then led to damage to the parts of the pancreas that make insulin. And in a way, not exactly, but something similar is happening in the lungs because of the inflammation in the lungs. And with the repeated infections that many people get, there starts to be scarring in the lungs and damage to the lungs. So one of the things we hope when we give people an anabolic hormone like insulin, especially in people with cystic fibrosis, is that they pick up weight and maybe their lungs might get a little bit better. Did you notice if anything like that happened?
J: I did gain a little bit of weight with it. I don’t know; my lung function was pretty stable at the time. So I didn’t really notice a difference with my lung function when I was diagnosed. But I did start to put the connection together that when I was sick, if I kept better control of my sugars, I got over colds quicker and I got over the infection better or faster. So for me, that was something that I was really zoning in on and a motivator to try to keep my sugars under better control. Because if I did that, I felt better because, if I was sick, I felt lousy anyway. Then, if I could just control my sugars and get over this infection a little bit better, it helped me. I put that connection together, and it helped me to stay motivated to take care of my sugars.
AS: Thank you for sharing that, because not just in people with cystic fibrosis, but even in people who have type 1 or type 2 diabetes, there’s an increased risk for respiratory infections, meaning [infections] of the lungs. Better glucose control is associated with not having as many of those infections. And of course, people with cystic fibrosis are at risk for many more infections of the lungs. It’s really great that you put that together and took it as a motivator.
J: Another thing with that is if they had to use steroids—it was a nightmare. It is a nightmare. If, you know, I have to go on steroids, it’s a nightmare to try to get it under control.
AS: Steroids, so medications like prednisone that people might have heard of, make the body more resistant to the effects of insulin. So even though you already take insulin, that insulin just doesn’t work as well anymore. In particular, the insulin that you take around mealtimes does not work as well. I don’t know if you noticed that your basal amount of insulin maybe didn’t change too much, but the amount of insulin you had to give yourself at meals just really goes up dramatically. And in particular, in people with CF, it goes up more.
J: I did notice that.
AS: One of the things I did want to talk about was the remarkable changes that have occurred in the treatment of cystic fibrosis. And maybe I’ll give you a chance to talk about some of these newer treatments that have come online in the last, five to seven years and how they’ve affected your lung function.
J: I have definitely benefited from some of the new drugs that are available. The new modulators that are available, and I’ll let you talk a little bit more about that.
I was lucky enough right before COVID to be able to take Trikafta, and that was such a game changer for me. So, I felt better almost immediately. I would say within two days, I started feeling better. But I actually did have a problem when I first started taking it. It was almost like a shock to my system, and I actually had to go into the hospital. I had some GI issues with it, and I actually was throwing up and things. Then once we fixed that, I did okay with it.
But I knew that they were worried that maybe I wasn’t tolerating it, but I was really hopeful. I knew that modulators were something that was coming out, and there were earlier ones that came out before Trikafta. And I was desperately trying to get onto a research study because I was really having a hard time with my CF. I was doing my chest PT, like at least twice a day, and I was doing eight nebulizers a day just to stay afloat. So I actually had to stop working because all I could do was really just take care of myself. So I was just doing basically my chest PT, my nebulizers, and just trying to take care of myself around, maybe 4 or 5 years ago. Then, when I was able to take Trikafta, I started feeling better. My lung function went up like 20%. My insulin needs actually went down.
AS: Oh, that’s interesting.
J: Yeah, it was really cool. I remember telling my pulmonologist, “I feel like I’m on vacation, this is what it’s like to be able to breathe!” It was just such a game changer. I was so thankful that happened before COVID. And I know that there [are] some people who can’t take Trikafta or the other modulators. But I think it’s made people with CF be healthier.
Obviously, I feel like I have a future and that’s actually why I actually went back to work because my husband said, “Listen, Joanne, I think you can go back to work now.”
AS: Yeah, I’m an endocrinologist, and mostly it’s pulmonologists that really direct the care of people with CF. And so it has really been, just a privilege to be on the sidelines watching what these newer treatments have done, and it is a true triumph of modern medicine.
First off, all the other care things that have been done for people with CF in terms of the antibiotics and how they’re administered have already helped people to live longer and more productive lives. I mentioned before that CF is due to a change in the molecule that helps the body transport chloride and bicarbonate; those are two of the electrolytes. And there are several different types of things that can occur, but either that molecule can’t get up to the membrane of the cell where it needs to do its job or once it gets there, it doesn’t do its job properly. So these newer modulators, as you call them, are just those small molecules that either help the molecule transport chloride and bicarbonate better or it helps the molecule get from inside the cell up to the surface better where it can do its job.
So the one that you mentioned, Trikafta, is a combination of three different pills that helps this molecule do its job better. And I’ve heard the same thing from other people. They say literally the next day or two days later, they stopped coughing, and it is just a remarkable thing to hear. And with regards to diabetes, as endocrinologists, we are all anxious to see if people with CF who also have diabetes—whether these modulators are going to help their diabetes get better.
I think the jury is still out, and we’re going to have to see how it goes. I think for some people, they describe needing less insulin. For some people, they are able to gain weight and eat better, and they actually needed more insulin in the initial stages, right after they started Trikafta, and so there was a lot of adjustment on both ends with regards to diabetes. Now these modulators are approved for use down to the age of two. So what’s really going to be important for the research community is what is going to happen to the risk of diabetes or for younger people as they get older? Hopefully, it will be less, but yeah, it’s interesting to hear that you need a little bit less insulin. I guess you had to be vigilant for low glucose when you started Trikafta.
J: When I first started, yes. And then I did gain a lot of weight because I was so used to a CF diet, which is eat as much as you want. I watched my carbs, but I was never calorie restricted. I had to look at what I was eating a little bit better to get my weight down a little bit because I did gain some weight.
AS: That’s actually another great point about how cystic fibrosis-related diabetes was, and maybe still is, different than type 1 or type 2 diabetes, and maybe you could just talk about that a little bit because people with cystic fibrosis tend to not absorb calories very well, and they’re underweight, and that weight really contributes to their lung function.
In CF care centers, it’s a big priority to help people get their weight up. Sometimes that is at odds with managing diabetes. Could you talk about that a little bit?
J: That is something like, growing up, I could eat whatever I wanted; no one ever said anything. I actually thought it was funny that I could have a high-fat diet. This is my diet. It was hard to go when I started gaining weight when I was on Trikafta. I was like, “Oh, wait a minute.” Now I’m a normal person who really does have to watch their calories and things like that. My friends used to say, “Yeah, now you’re normal. Now, you know what it’s like.”
It was a swing from one direction to another as far as diet goes. And even when I was in the hospital, I remember before Trikafta, the endocrinologist would come in to visit me, and she would get very upset about my diet because it was a high-fat, high-protein diet, which is what they would order for me. She would come in, and she’d say, “What are you doing eating all this food?!” So, I felt like every time I was in the hospital, my diet order would change multiple times, from a diabetic diet to a high-fat, high-protein, double-portion diet. So, it was something; it was totally different. I’ll be honest with you, what Trikafta has done for me and my life is totally worth it.
It’s so nice to have my life back and to be able to breathe, and I feel like I’m going to live longer than I ever thought I would. So, it’s really amazing times to have CF at this time. Because I know what it was like before and I know what it’s like now.
AS: One thing that is true is that even before this one specific modulator came out, there were other modulators that had come out before that. So Trikafta is a combination of Elexacaftor, Tezacaftor, and Ivacaftor. And so ivacaftor had come out before, and it can be used for people with CF who have very specific types of mutations.
And there are other modulators that came out in between as well that also had good effects, but we’re now on to one that seems to have an even better effect, and you mentioned one thing: there’s about 90-95 percent of people who are eligible for these modulator types of treatments. But there are patients that aren’t eligible for these modulator treatments because of the type of CFTR they have. I know that it’s an active area of research. One thing about cystic fibrosis is what an amazing, I think, effect many of the foundations that advocate for patients with CF and for research in CF; they’ve had a huge effect on really pushing the science, pushing the clinical care. And so now we have these; they’re called highly effective modulator treatments, but now they’re pushing for treatments so that all patients with CF will have a meaningful treatment and so that they can also have these types of benefits.
RK: That’s so neat to hear about all these new treatments and it sounds like a really exciting time, to have these options at a minimum for people with CF.
Dr. Sidhaye, I wonder if you could talk a little bit about prevention of diabetes in people with CF. Joanna, you mentioned the weight challenges and how with CF, you’re encouraged to gain weight, high-calories, high-fat, yet in the context of prevention of diabetes, those are perhaps the exact opposite of what we want. Is there research being done into prevention of diabetes in CF?
AS: That’s a good question. I think that this is so fundamental to why CF-related diabetes is different from type 1 and type 2 diabetes. In the pre-modulator era, I would say that getting a person with CF and making sure their weight is where it needs to be to help preserve their lung function was a priority. And so we would have to balance. Certainly, advise some restriction of calories and carbohydrates, but not anywhere to the degree that we would for people with type one or type two. And that’s because gaining weight was so important. Insulin is the way that we make that happen. But now we’re in a different era, and modulators mean that, if I remember the numbers correctly, just about a third of people with CF can be classified as overweight or obese, which is a totally different place than it was 10-15 years ago. I think we are going to have to start thinking about CF-related diabetes a little bit like how we think of type 2 diabetes.
We are going to have to start thinking about that and counseling patients in ways that we never did. I know that we have even started using medicines that we might use in type 2 diabetes for people with CF. At this point, it’s really just single cases done by individual practitioners, but there are studies ongoing about this.
I definitely think that in the modulator era, CF care centers and providers who care for persons with CF are going to have to figure out how to counsel people about risk factors for diabetes. I definitely think that if there’s a family history of type 2 diabetes, then that is something that we all should think about when we meet people with CF who might be at risk for diabetes and start counseling them about their weight. But this is not a conversation that anybody would have even thought of having just five or six years ago. I think it’s not even on the cards.
J: It’s funny you say that because I went on an insulin pump. I thought, number one, it would make my life easier in some ways, being on a pump, because it was a little bit more convenient to take my insulin. But I felt because my energy needs were so high and my calories were so high, it was easier for me to control based on having a pump. But now I have to watch what I weigh and what I eat, but I still have a pump, which has helped big time. But I use it a little differently and realize it’s not a free for all, and I still have to watch what I eat
AS: I’m glad that this conversation has drawn parallels. There have been remarkable changes in the care of CF. But there have also been remarkable changes in the care of diabetes that you yourself have just described from being on NPH and regular insulin with vials to pens and now insulin pumps. And I’m sure you use a continuous glucose monitor as well.
J: Yeah.
AS: All of those things have made the control of diabetes, I want to say in some ways easier. I know that a lot of work still has to be done by patients.
J: It’s definitely a lot easier than what it was, and CF has gotten a lot easier than what it was because of these different drugs. I feel like I’m living in a really interesting time to be able to see, and I don’t know if people, in the future who have CF, are going to really understand what it was like for people who didn’t have these drugs or even the technology with diabetes.
RK: Joanna, I found it fascinating when you talked about your perspective about feeling like you had more control when you were diagnosed with diabetes compared to the diagnosis of CF, which was still emerging. There was a lot still not known at the time you were diagnosed. While it can be a burdensome disease, it was interesting for me to hear your contrast and how you felt like you had a say in what was happening [with your diabetes] and in some ways made it a fun game in order for you to be able to manage effectively. I wonder if you could talk a little bit about that empowerment that you felt, the fact that you had a role in the management of your disease.
J: I don’t know how it happened. I do feel like with CF, there are so many variables that you don’t have control over. I just put the connection that I can really control my diabetes. And I know a lot of people with CF; I know friends with CF; I know it’s not [easy]; it’s a hard thing because it’s one more thing you have to worry about—your blood sugars. But for me, I felt it did help me control my health, and I felt like it did impact my CF. So, for me, it would seem natural to me to do that. But I know I’ve been lucky with CF; I really have. I know people like my sister who weren’t very lucky with CF. You can get an infection, and it can really take over your life, and you have no control over it. I’ve gone through periods where I didn’t think I was going to get better. Before I had these new drugs, I wasn’t sure if I was going to get better. And I think I was heading the road towards a lung transplant. I think I was on my way. So, I think with having the CF and the diabetes, it was just one aspect that I felt like I could control.
AS: Think it’s a good message even for us providers. That maybe for certain patients, couching it in those terms may be a motivating factor.
J: Yeah
RK: And clearly the healthcare providers you saw, I’m sure, had a big impact on how you were able to manage your disease. And Dr. Sidhaye is an expert in the field of cystic fibrosis-related diabetes, but I imagine not all the providers you saw were as familiar with the management of diabetes. How do you think you were able to learn more about how to manage this particular type of diabetes?
J: I always took it on myself that I felt like I was in charge. I tried to be in charge. And I knew that a lot of the doctors I saw for diabetes might not know anything about CFRD. I’m probably the only patient they’ve ever had with this. I don’t want them to treat me like a type 1. I don’t want them to treat me like a type 2. But I took it with a grain of salt, and I felt I [could] feel my way out and do what’s best for me with everyone. I think there’s aspects of treating type one and there’s aspects of treating type two that I can use for my own health. So even though maybe they don’t know anyone quite like me, I think I can try to make this work for me the best way. And I don’t know if that makes any sense, but I tried to do that.
AS: I know that there’s a push by, in North America at least, the Cystic Fibrosis Foundation to actually educate endocrinologists in the care of persons with cystic fibrosis. That’s the way I got involved and learned more about it myself. And so I think the major professional organizations, not just for CF but probably in many other situations, do have a role to play in making sure that we get educated, and it’s on us to get educated as well.
J: I think that’s great because people with CF [may] feel like you’re not in one basket; it’s not a cookie cutter. And I think sometimes you have to figure out—all right, it’s nice that they have people that are being trained to understand the CF-related diabetes because it isn’t type one, it isn’t type two; it’s a little bit different.
AS: And I think we have to be sensitive to that.
RK: Dr. Sidhaye, I wonder if you could talk a little bit about the complications of diabetes. Are they the same in people with CF who have diabetes versus not? And Joanna, I wonder if you could talk about what routine screening you undergo for complications from diabetes as well.
AS: Yeah, that’s a good question. The typical long term complications we think of: eye damage, kidney damage, and damage to the nerves, they can occur in people with cystic fibrosis related diabetes, and they do occur. It seems to be that they don’t occur quite with the same frequency. That is to say there are some people with cystic fibrosis related diabetes whose fasting glucoses are actually pretty normal and it’s only the post meal glucoses that are a problem. Those people seem not to be at such a high risk for these types of complications that I did mention. But otherwise, if they do have progression of their cystic fibrosis related diabetes, they are at risk for those complications.
Now, we always think of diabetes as being a risk factor for cardiovascular disease, so heart disease and stroke. I would say until very recently, that was almost unheard of in people with CF. And that’s another place we’re in a new era where we are going to have to start worrying about that and counseling people. But we don’t know how to do it yet. For the other complications, we do screening, and I think Joanna could probably tell you if she does or how often she does it.
J: I do the regular screening like most people with diabetes. So I get my eyes checked once a year for a dilated eye exam. My endocrinologist checks my feet to make sure I have feeling in my feet. I get my blood pressure tested and cholesterol, which never really has been a problem. But I have noticed with these new meds sometimes I have issues with my blood pressure a little bit, which I never had. I guess with CF and just getting older in general, these are things I’m going to have to look at a little bit. They check my microalbumin once a year too. I just get the normal tests done that most people with diabetes get, and I get my A1C checked at least twice a year, every 3 months. So like everyone, if mine’s at goal, they sometimes are a little bit more lenient with me about getting it checked, but I just try to keep up with it. And, the pump and having a CGM has helped. I’ve lived a really normal life. I also had a baby. I’ve had a very normal life with just keeping on top of my CF and my diabetes, but I just keep checks and make sure all that preventive stuff is taken care of.
AS: I’m glad Dr. Kalyani brought that up because it is important that we do the normal screening as you mentioned for urine protein, for foot exams, and for eye exams in people who have cystic fibrosis-related diabetes. Because there are things that we can do to prevent those complications or at least delay them from occurring.
RK: Yes this has been such a wonderful discussion. It’s provided such great insights into something that we’re learning more and more about. But for people with cystic fibrosis, diabetes can occur at a higher frequency than in the general population. And it’s important for people to be aware of this, especially if you have cystic fibrosis or even other medical conditions that put you at risk for diabetes. Dr. Sidhaye, thank you so much for offering your wonderful expertise. Joanna, I wonder if you might have some parting words for those individuals that are listening and who might be struggling to manage their diabetes.
You talked about some of the experiences you had, but what would you say to someone out there who, regardless of the type of diabetes, is struggling to manage it?
J: I would say, I think that the more you can learn about how to take care of yourself, it’s going to help you manage it better, and all these things add up. I think, even just doing a little thing every day is going to make an impact on your health. I think all these little things can make a big difference in the end. So for anyone with CF or diabetes, I think it’s important to just, do the best you can. I feel like with the diabetes part, with CF, there are some things you can do to improve your health. So that’s what I would say.
AS: It was so great to hear from you. And we are so grateful for you giving your time and your perspective. And thank you Dr. Kalyani for inviting us.
RK: Thank you so much, Sidhaye and Joanna for being here and talking about this very important topic. I know I learned a lot and I’m sure that our listeners did too. So, thank you again.
AS: You’re welcome. Thank you.
RK: I’m Dr. Rita Kalyani and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our patient guide to diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org. We love to hear from our listeners. The email address is [email protected]. Thanks for listening. Be well and see you next time.
In Episode 38, Dr. Kalyani welcomes Karl Zeren, DDS. Dr. Zeren was raised in Towson, Maryland and completed a Bachelor of Science degree in Psychology at the University of Maryland at College Park. He attended the University of Maryland School of Dentistry and finished his Dental training in 1975. He was on active duty in the United States Navy for 2 years finishing a general practice Residency at the Naval Hospital in New Orleans, Louisiana. He returned to Baltimore to study Periodontics at University of Maryland under the world-renowned Periodontist, Dr. Gerald M. Bowers, completing his Residency in 1979. He opened a practice limited to Periodontics in the Timonium area and has been actively involved in both private clinical practice and dental education since that time. Dr. Zeren began teaching in the Residency Program at the University of Maryland in 1980. Dr. Zeren became Board Certified in Periodontics in 1986 and has continued to pursue and develop important advances in clinical science and technology to enhance his patient’s treatment outcomes. Currently, Dr. Zeren assistant clinical professor of Periodontics and Periodontal Implant Prosthetics residency program at University of Maryland School of Dentistry. He is involved with treating residents in the multidisciplinary fields of Periodontics, Periodontal and Implant surgery and implant prosthetics.
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani at Johns Hopkins. We developed this podcast as a companion to our Patient Guide to Diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org.
Today, we are pleased towelcome Dr. Karl Zeren, who will be educating us on diabetes and periodontal disease. Dr. Zeren received undergraduate and dental training from the University of Maryland. He served on active duty in the U. S. Navy at the Navy Hospital in New Orleans, Louisiana, and completed postdoctoral training in periodontics at the University of Maryland in 1979. He’s a former assistant clinical professor of periodontics in the periodontal and periodontal implant prosthetics residency program at the University of Maryland School of Dentistry and retired as a Clinical Associate in the Department of Otolaryngology at the Johns Hopkins University School of Medicine.
He has lectured extensively on guided bone regeneration, implant surgery, implant aesthetics, and 3D imaging, both nationally and internationally. He currently works in private practice, West Perio, in Maryland. Welcome Dr. Zeren.
Dr. Karl Zeren, DDS : Thank you very much, Rita. I appreciate the opportunity to speak with you and share some information.
RK: We are excited, Dr. Zeren, to have you here on the podcast today and to learn about this important issue and condition that can affect people and particularly people with diabetes. I wonder if you could start off by telling us:What is periodontal disease? What are some common signs and symptoms that individuals should be aware of?
KZ: Rita, it’s really interesting because it’s one of the most common, if not the most common disease known to man. It’s there. It is in fact an inflammatory disease, and it’s triggered by the natural germ population that occupies the oral cavity. The oral cavity is typically going to harbor about 100 plus billion bacteria at any one point in time, which is normal. The bacterial population creates a film – it’s a biofilm – and it’s important that people understand that bacteria in their mouth is not necessarily bad – it’s essential.
We live in a sea of bacteria and viruses; mother nature has given this film as a source of protection. The real issue is when this germ film has a chance to over accumulate on the tooth surface. The tooth surface has a little bit of electrostatic charge on it that allows the germ film to adhere. When that starts to overgrow, particularly right around the gum line, it’s going to trigger inflammation. That’s called gingivitis. As long as the inflammation resides solely in the soft tissue, then it’s a reversible process. The problem is that when it’s allowed to continue. It can extend down into the supporting structures, down into the ligaments that holds the tooth into the bone, and the bone itself. That’s when the problems really start, and the issue is, early on, it doesn’t hurt. And many patients will say, “Dr. Zeren, it doesn’t hurt, why should I worry about it?” Obviously, there are an awful lot of medical conditions that don’t hurt until it’s too late. That’s realistically what we get down to. Early diagnosis of this problem is important. Patients should be aware that if their gums become red and swollen and bleed, this can really be a problem. And as this disease progresses, the teeth can get loose and literally fall out.
RK: Wow. That’s interesting. It sounds pretty complex when you break it down in that way. Just to reiterate some of the things you said, it sounds like bacteria is normal in the oral cavity, the mouth, the esophagus. It sounds like it’s needed to digest food. Is that right? And what we’re talking about is when there’s an abnormal growth or an overgrowth in parts of the mouth and other parts of the oral cavity where it shouldn’t be, such as the bones and the teeth and where it can really cause problems. But what about the gums? I think part of what confuses me sometimes is the distinction between gingivitis or inflammation of the gums and periodontal disease. Are they the same or are they different?
KZ: Periodontal disease is the overreaching disease, just like diabetes is the overreaching and you break that down into multiple subcategories. Periodontal disease incorporates gingivitis periodontitis. Again, gingivitis is inflammation of the gum tissue itself. If the bacterial challenge is sufficient, then it can break down the natural seal between the tooth and gum. There’s a relationship between tooth and gum, somewhat like that between fingernail and cuticle. When the bacterial challenge occurs you have to, first of all, have a susceptible host. But, when that occurs, it’s going to get into those underlying tissues and start to destroy those tissues. But having said that, I think it’s important to understand that about 53 percent of the population is not genetically prone to bone loss, although they can have significant inflammation in the tissues, the tooth decay and things of that nature, you’re not going to lose bone. This really gets down to how they’re immunologically programmed. In about 47 percent of the population, you’re going to see a broad spectrum of vulnerability. Everybody has a large germ population in their mouths. But that does not necessarily mean that person’s going to lose bone, and that’s important. So, there’s this whole genetic component to this as well.
It’s a very common disease. And I think that when we start to look at the impact, based on some of the research I’ve done, about 38 million people of all ages in the United States have diabetes. And again, it’s a very common problem as you well know.
RK: I think it’s potentially one that most people don’t pay attention to in terms of you have the bacteria in your mouth. You have this germ film, like you talked about, but it sounds like when there’s an overgrowth, when there’s too much of that, and in those people who are particularly susceptible, such as those who have genetic factors, like you said, or perhaps other conditions such as diabetes, as we’ll talk about, that they might be more at risk for the complications, particularly the bone complications in the teeth. What causes this overgrowth? And perhaps that’s the million dollar question. But, why does it happen that some people might have overgrowth of this natural germ fill in their mouth and the old cavity that puts them at risk for these periodontal complications?
KZ: As I said earlier, we’re all going to harbor this germ population. The real issue is whether the individual understands what they need to do to control this germ film and, in fact, does it. We know that we can educate patients, advise them, and things of that nature, but they also have to get on board with their own personal care. In patients who are genetically prone to periodontal infection, or bone loss. If they’re adequately treated, if they’re brushing effectively, flossing effectively, using antiseptic mouth rinses, [that] can slow down the rate at which the germ film can reorganize. Then they can get into a maintainable state. But this germ film is constantly growing and that’s really the issue. And it requires daily management.
RK: It certainly sounds like this is something that needs to be maintained and given attention to on a regular, if not daily basis.Turning to people with diabetes, if we could just talk a little bit about the risk in people with diabetes. Do people with diabetes have a higher risk of gum or periodontal disease and how high really is that? Is it higher in people with uncontrolled blood sugars [or] on particular medications? What do you usually tell your patients?
KZ: There’s no doubt that diabetes is going to impact periodontal disease. There’s a very clear relationship between a patient, their glucose level, or hyperglycemia, and the degree of inflammation that we see in the oral cavity. Research clearly shows that in that population, when you control the germ film effectively, then the patient’s glycemic control improves markedly.
There’s a very definite correlation between the two of them. When you have this increased glycemia, as you certainly appreciate.It’s going to reduce blood flow in vessels and things of that nature. It’s going to begin to alter how the immune system is able to function. It weakens the immune system and patients that have periodontitis they are threefold greater risk in patients that have diabetes. There are really significant issues that go into that. But ultimately there is a very significant relationship between the two and just management’s important.
RK: That’s interesting to hear the bidirectionality, that it can go both ways. From what I understand, from what you said, that people with diabetes can be at higher risk of developing these periodontal, these gum conditions. But also by managing effectively the dental health, the periodontal health and preventing this from happening, it could contribute to improved diabetes management. Is that right?
KZ: [It] absolutely does, and research clearly shows that there’s a direct correlation – one to the other. We understand that if there’s hyperglycemia, there’s going to be a lot more glucose in the saliva. That opens the door for the bacterial populations to be even more overgrown. So, you create a better micro-nutritional base for this bacteria. We then realized that from an immunologic point of view, the system is just not as competent. From a vascular point of view, you’re not going to get the same blood flow. You’re just creating this perfect storm.
RK: It certainly does sound like it can be a vicious cycle that really needs to be broken in order to effectively manage not only the periodontal conditions, but also to manage the diabetes as well. What about diet? Do you think that what we eat can impact our risk of periodontal disease? And do you think this has bearing on people with diabetes in terms of what we should recommend for food?
KZ: Obviously a patient who’s diabetic needs to really be aware of their carbohydrate intake. And when we look most immediately in the oral cavity, if people are snacking on really dense carbohydrates, they tend to help accumulate on the tooth structure which opens the door for even more issues.
A healthy diet, people look at that’s rich with fruits and vegetables, very important all the way around. I think that diet probably is going to impact diabetes more than the oral cavity as long as there’s not a lot, again, carbohydrates, sugars don’t help out a lot. But no, interestingly people will say, “If I eat a candy bar, do I have to go brush my teeth?” and the answer is – “No.” You’ve got to control the germ film, and the germ film is constantly cycling. If you have adequate hygiene and you’re performing that effectively on a daily basis, then the germ film’s not really given the opportunity to significantly overgrow and start this whole process.
But it is the day-to-day effective hygiene that’s important. And oftentimes, in my experience, I’ve been in practice for over 40 years, patients oftentimes, do not know:
I’ll ask people, “who taught you to brush your teeth?”- “I guess my mom did, or my dad,” or this or that. And they’ll observe a behavior and carry it out, and assuming, because they’re performing the behavior, it’s effective. And oftentimes, it’s flatly not. Okay. Being in the hands of a really good dental professional who’s looking at how effective you are with your day to day hygiene is really essential.
And coupled with that, is how to identify that subset of the population. Again, coming back to the fact that 53 percent of the population is really not at risk to lose bone. But it’s in that other 47%. And those are the people that really need to be educated more and more about these kinds of things.
Diet being one thing, but smoking is terrible when it comes to dealing with periodontal problems. We look at an increased risk of disease not being two or three times, but as much as five to 10 times greater risk because of that impact. And if you are diabetic on top of it; you’re in trouble.
RK: It certainly does seem that, as we see with other conditions, such as heart disease, the combination of diabetes and smoking can elevate the risk of these gum and tooth issues. The periodontal disease that you talked about. What are some signs and symptoms that people might be aware of? Or is this largely silent in the early stages? I know we talked briefly about teeth falling out, which seems like a kind of a later stage. But what might be some early signs and symptoms, if at all, that someone with diabetes should be familiar with?
KZ: Again, from an immunologic point of view, their system’s not going to be as competent. It’s not going to be as responsive. Even with a lesser degree of germ overgrowth, we’re likely to see the tissues swelling. We’re likely to see bleeding when they’re brushing their teeth. Those are very early, very solid indicators of a problem. And as you appreciate, there are a lot of people, from my research, about 7 million people, who have diabetes, don’t even know it.
And I’ve certainly seen patients when you track people over a long period of time and stability and all of a sudden that stability is gone. And you ask them, “Have you had a recent physical? Have you talked to your physician about diabetes or anything else going on?”
“No, I don’t want to go do that.” Then you start to see significant bleeding. You start to see abscess formation, purulent, pus, drainage around teeth. That’s a real trigger. And I’ve certainly. referred patients to their physicians and they come back. Yep, you’re diabetic. It’s there.
And for people who are questioning this, certainly if they’re starting to see bleeding when they’re brushing their teeth or flossing, then that means that’s not it. They’re not in control of the situation and they need to seek professional care.
RK: That’s interesting. And it’s true that in some cases, perhaps it’s the dentist or the person who examines your teeth that is the first to detect signs of periodontal disease. And perhaps that could, in some cases, be the first sign of underlying metabolic disease or diabetes. Have you detected individuals in your practice in that way, who didn’t know they had diabetes and the first manifestation or one of the early manifestations was periodontal disease?
KZ: [I] absolutely have. And studies coming out of Columbia indicate that dentists, in a very large majority of the time, helped to identify these early signs and get people on the road to getting these things managed.
So absolutely, it’s important to have that, but what should a patient expect from their dentist at the same time? The world’s getting busier and unfortunately, less time is spent in focused care. Management. They should have a clinical examination that would include probing depths. And if probing depths are normal, then they’re going to range maybe one to three millimeters and there would not be any bleeding. But if the probing depths are going four or five and six millimeters and there’s bleeding, then you have a susceptible host. All right? If the patient’s day-to-day hygiene appears to be adequate. Meaning that you’re not seeing a lot of accumulation of plaque or calculus and you’re still seeing this increased probing depth, then immunologically something else is going on here and that’s when you start to really think about diabetes as a coconspirator in this problem.
RK: Yeah, getting back a little bit to what we were saying about, sometimes diabetes may be detected for the first time in dental practices. It is interesting that in our clinical guidelines, even for diabetes management, there are guidelines talking about that utility of screening for diabetes in different health care settings such as dental practices. Because most people do or should go see their dentist at a recommended frequency per year, and that could sometimes be even more frequent than they see their primary care doctor, unfortunately, in some situations.
For sure, I think any health care provider really being vigilant and on the alert for complications from diabetes, can sometimes be the first to help bring attention to the diagnosis. You mentioned some aspects of the dental examination that might be part of a comprehensive dental exam that someone could experience when they see their dentist.
What are the preventative measures that are usually recommended for people with diabetes, in terms of how often they should be seeing a dentist?
You talked a little bit about what they should expect from their dental exam in terms of probing depth. I wonder if you could. Maybe give some details on what that is.Is that how receded the gums are? And then, how often and how should they be brushing their teeth? I think that’s a big question I hear from my patients often too, and I’d love to hear your thoughts on that.
KZ: Rita, it’s a really important question that you just posed. And in looking at the diabetic patient, the first thing we want to determine is: Are they also genetically prone to periodontitis? And I’ve seen plenty of insulin dependent diabetic patients who have adequate oral hygiene and don’t show any real signs of breaking down. We need to separate out people who are genetically, not prone to periodontitis, and have diabetes versus those patients who are genetically prone to periodontitis and have diabetes. So that’s a really important point to understand.
In terms of what they do, brushing and flossing on a day-to-day basis is essential. Having effective examination, this is really key for people. Making sure that they are getting probing depths, their evaluation of the degree of inflammation that is present from one visit to another is important. So, if we start to see an increased level of inflammatory change from one visit to another, that would suggest that we don’t have stability. In terms of brushing and flossing, using an electric toothbrush is very helpful. I’ll ask patients, again, like we said, “How often do you brush your teeth” and “I brush once a day, I brush twice a day, I brush four times a day.”It’s not much a function of how often you do it- it’s how well you do it. And that’s really an important consideration. Again, “Who taught you to brush your teeth?” Is another key question. People should rely on their dental hygienists to coach them on how to effectively brush and floss. And as long as they’re doing that effectively , underlying that word effective, then they’re controlling the underlying etiology. And the more that we can control that etiology, the less opportunity these other complicating factors have to impact.
RK: So that’s interesting because often people will ask, “Should I brush after every meal? Do I need to bring my toothbrush to work with me?” And from what I’m hearing, clearly it can only help, perhaps, to brush more often, but more importantly, it’s the quality of brushing from what you’re talking about. Is that right?
KZ: Yeah. Interestingly enough, this whole idea of having to brush your teeth after every meal and see a dentist every six months comes from a toothpaste commercial produced in the 1930s. Ipana toothpaste, as a matter of fact. The goal of that commercial was to get people to squirt more toothpaste on a toothbrush and they imply that the food that you eat causes dental disease. It’s important to understand that if you’re brushing effectively, then for the vast majority of people, once in a 24-hour period is sufficient; number one. Number two; the food that you eat in general does not cause dental disease. It’s the germ overgrowth, tooth decay, and periodontal disease that are triggered by that germ overgrowth. And I think that’s really essential. You don’t need to take a toothbrush to work with you. Okay, if you brush in the morning, at nighttime brush and floss at some point. Also very simply understanding that we’ve got this large germ population, if you can rinse with an oral antiseptic, Crest has one, Listerine has one that says antiseptic on it, then if you’re rinsing with that, a couple of times a day for 20 seconds or so, you’re simply slowing down the rate at which that germ film can reorganize itself. These are the very simple things that people can do to help control the environment and its environmental control.
RK: That seems to be such an important point that really, if you are brushing adequately in the morning and evening, doing the antiseptic, doing the flossing, that it sounds like your germ film should be adequately controlled. If you’re doing it optimally throughout the day then you don’t have to brush after every time you eat. Is that right?
KZ: Correct. Yes. And people who brush after every meal tend to cause a lot of gum tissue recession. They’re causing harm to themselves. And typically, if they’re using a manual toothbrush, they go into ritualistic behavior. They start carrying out a behavior and they’re not really thinking about what they’re doing. They assume because they’ve got a toothbrush in their mouth, that it’s controlling the germ film and oftentimes it’s not the case.RK: [It seems] to be another example where too much of one thing may not be a good thing. And it’s important to know how to do the proper technique.
What do you tell your patients about the proper brushing technique? How long should we be brushing at a time? And should we be angling it in a certain way? Should we be covering the teeth in a certain way? Are there some general principles that you could share?
KZ: Absolutely. And obviously this has been, this has evolved over a century of time with different people suggesting that you should angle the brush in one way or another, and you should do X number of strokes and things.
The most effective single thing you can do is to begin using an electric toothbrush. These modern electric toothbrushes have pressure sensors in them, giving you immediate feedback. Some of them in fact have apps that will help you to understand where you did and did not clean effectively. But using an electric toothbrush and allocating 2-3 minutes a day with that brush carefully going around your teeth is exactly what you want to try to accomplish. Often times people will rely on looking in a mirror and assuming that they’re translating an effective activity and it’s not necessarily the case. Interestingly, if a person simply sits down on the bedside or a chair and focuses on where they are in their mouth and what they’re doing with that brush, they’ll tend to be imminently more effective in controlling the germ film.But it’s a new behavior. That’s one of the behaviors that we constantly are coaching people to incorporate and as they do, they all will often remark, “I just can’t believe how much cleaner my mouth feels as a result.” These are very simple things, but we have to break-up old habits that are full of assumption and not effect.
RK: Yeah. That seems like a relatively simple thing to do, to have a mirror as you’re talking about to brush your teeth and but could have profound benefit is what is what I’m hearing. Is that right?
KZ: Absolutely. It’s controlling the etiology. You’re controlling the underlying causes. And as you appreciate, the more effective you are in controlling etiology, more effective you are in helping to maintain health.
RK: For sure, I fully agree. For those listeners who may not have an electric toothbrush, let’s say, for lack of a better word, an old school toothbrush that you don’t plug in. Could you still get adequate dental hygiene that way? Would you have to brush longer? Are there certain kinds of bristles you recommend? What do you usually tell your patients?
KZ: That’s a really important question. Certainly, a manual toothbrush can provide very adequate debridement or disruption of the germ film. You want to use soft bristles. People oftentimes will hold a toothbrush, like a hockey stick or a screwdriver and just whale on themselves, and that’s not really helpful at all. Holding the brush in your fingers and consistently and lightly going over the same areas in a routine fashion is very effective. It’s very effective but certainly steer clear of a hard bristle brush because that can cause a tremendous amount of damage. And again, if the individual has the opportunity to incorporate an effective antiseptic rinse, it’s again, just giving them another layer of control.
RK: And we’re talking about with a soft bristle brush, a light rotating motion, or is there a particular motion you recommend in brushing the teeth?
KZ: [There are] a lot of philosophies on that, but I think an overlapping stroke with gentle pressure and, allowing literally 30 seconds to go from ear to ear on the outside and ear to ear on the inside in each arch. You’re going to end up maybe brushing for two minutes and just do it lightly and in that kind of a stroke, as long as it’s overlapping. That way you’re much more effective in dispersing the germ film. You’re not getting rid of it. You’re simply trying to disperse it.
RK: That’s an interesting point and the overlapping aspect as well. It sounds it could be rotational, it could be angular, it could be back and forth, as long as it’s overlapping. Is that right?
KZ: Yes.
RK: That’s great to know because for some individuals, they might prefer to do it one way or another. It’s good to know that there’s many different ways to achieve the same outcome, which is improved dental health. One of the things we talked about was how often people with diabetes should see their dentist. You made the important distinction between those people with diabetes who might be more genetically prone to have dental disease versus those that are not as high risk. For the general person with diabetes, just the general population; how often should they be seeing their dentist? Clearly those who are at higher risk might go more often.
KZ: Yep. Again we talked about this, commercial suggesting that a person should be seen every six months. That’s again, marketing. If we have a patient who is genetically prone and they’re diabetic, they probably should be seen three or four times a year. Cleaning procedures for those people should take about an hour. If they’re going in and they’re getting their teeth cleaned in 15 minutes, it’s grossly inadequate.
It’s important that our population understands that health care is changing a lot of the amount of time that people are allocated for professional care seems to be changing a lot. And it’s important that people who are at risk realize that they need a more specific kind of care. And if patients are really questioning whether they’re getting adequate care, then they may very well want to seek treatment by a periodontist. And, by training these individuals are much more focused on all of these kinds of risk factors and have a much deeper appreciation for the perio-systemic link here. We talk about diabetes, but people who have significant periodontal disease are also at greater risk for heart attack and stroke because of the inflammatory burden that it provokes.
RK: That’s interesting. For those who are at higher risk genetic risk of having periodontal disease, three to four times really intense one-hour sessions. And in addition to seeing their general dentist, seeing a periodontal specialist, such as yourself, might be beneficial. Is that right?
KZ: Yeah. If a person, if their general dentist, is indicating an increase in inflammation and probing depth. Then it would be prudent for that patient to seek management by a periodontist.
RK: And then for the general population of people with diabetes, who may, let’s say have average risk or just not a high risk, seeing their dentist twice a year, for 15 to 30 minute sessions. is adequate?
KZ: Generally not. What happens under those circumstances is that somebody is simply using a polishing cup and not really going below the gum line. You’ve raised a really good point. The biofilm is going to cause pocketing around the tooth. We use the analogy of fingernail and cuticle: when that seal is broken, bacterial populations are getting deeper and deeper into those tissues. And it really does require debridement or cleaning down below the gum line, either with hand instrumentation or ultrasonic instrumentation to clear that out. Simply polishing at the gum line itself is completely ineffective.
RK: It sounds like even for the general population of people with diabetes, it also requires more than just polishing. Really looking to see if there’s any pockets and more than, how long would you say they should expect a dental visit to last, if they have an adequate exam?
KZ: A minimum of 45 minutes. Unfortunately, insurance nowadays doesn’t afford people the opportunity to do that. But again, making sure that the population is aware of what these risk factors are and things that they can do to minimize their risk or mitigate these problems is essential. It’s really an emotional roller coaster for patients who have diabetes and periodontal disease and see them losing teeth and saying, “Can’t somebody help me?” The answer is “Absolutely,” but it has to go, outside the norm of normal dental treatment.
RK: And, specialists, such as yourself, are critical to helping people who have that advanced stage of periodontal disease. You mentioned some of the complications, which I think are important to emphasize, that it’s not just the periodontal disease and diabetes, but the higher risk of cardiovascular disease, other inflammatory conditions. What other complications can people see beyond the oral cavity because of this periodontal disease?
KZ: As we see inflammation and bone damage occurring, it becomes a two way street. The blood vessels around these areas of inflammation open up that immune cells can come in and try to battle. Once those portals and vessels open up, the endotoxins and the bacteria themselves can go into the bloodstream and literally shower the system with these toxins. We clearly have been able to identify atheromatous plaques in heart disease that harbor specific bacteria, particularly P. gingivalis. And they can go in and biopsy these things and find living bacteria in these atheromas. We can see the same thing occurring in the brain and apparently has some impact or increased risk for stroke and potentially Alzheimer’s. So, it’s the bacterial overgrowth in the oral cavity [that] creates an inflammatory burden. The important thing to understand is that in general, with effective treatment, we can control that inflammatory burden and take that portion of it off the table.
RK: It’s important to know that if left untreated, that the periodontal disease, the inflammation associated with it can travel beyond the mouth and the oral cavity to the brain, the heart, and really lead to complications there as well. [It]really underscores the importance of addressing this or preventing it from an early stage. One of the questions that I get from my patients, and I think perhaps some of our listeners might have is, “If I have diabetes, am I at a higher risk for having cavities?”
KZ: Yes. As we discussed earlier, particularly in the patient who’s not as compliant as we would like to see them. There’s going to be more of hyperglycemia that’s going to, again, create more of a micro nutritional base in the oral cavity, and that opens up the door for tooth decay. Diabetes also can decrease salivary flow. And as a result opens the door for tooth decay. Those are very definite factors that come into play, and clearly patients who are diabetic should be much more alert to their dental health overall.
RK: I think that is the important point that all of these conditions that we’re talking about really related to the teeth and gums are at a higher frequency in people with diabetes. They’re more likely to develop them. And really, this relies on the person with diabetes being more vigilant about their dental health, perhaps compared to people who don’t have diabetes.
Now, for those people who, despite preventative measures or because of lack of preventative measures or because they’re at higher risk, do develop periodontal disease, how is this usually treated? When you see someone in your practice, and clearly this will depend on what they come to see you for, but in general, is it medication? Is it surgery? What is usually the treatment for periodontal disease?
KZ: First and foremost, control the cause. When we’re dealing with dental issues, controlling the germ film is essential, which gets down ultimately to very effective oral hygiene. Once we’ve been able to develop that kind of behavioral pattern, we can do different kinds of procedures to clear out the germ film from below the gum line. Sometimes it’s as simple as a process called scaling and root planing. Noting that as the disease progresses down the root of a tooth, the root surface itself becomes toxic, and that root surface needs to be cleaned. There are times when we can intervene with laser therapy to detoxify the root surface, sterilize the root surface, the bone, and the gum tissue at the same time. And depending on how involved or progressed this disease becomes, surgical intervention is oftentimes necessary. But to that same point, a patient is diabetic; they typically don’t heal as well. You don’t have the same blood supply as you’d like in a non-diabetic patient.
They don’t heal as well and they heal slower. These are factors that come into play as well. Again, it’s your point that patients who are diabetic should be much more vigilant about their oral health.
RK: In particular to prevent these complications from happening, as you mentioned. And by the time perhaps that you see patients in your clinic, it might be too late in some cases, is that right? Some of the complications may require a surgical intervention?
KZ: That’s absolutely true. Not only that, but there, there are plenty of times when the disease has progressed far that you have to take the teeth out. That’s debilitating from a lot of different directions. People who can’t chew end up selecting a more dense carbohydrate diet. And if they’re diabetic, it makes it even worse. The inability to effectively chew to select [a] diet that is healthy also becomes a secondary component to this process.
RK: I think that’s so important to really keep in mind, that if not prevented, if not managed, if not treated appropriately, that there can be complications and surgery ultimately to remove teeth that can have significant consequences on day-to-day physical function and also quality of life. I think [it] further underscores the importance of proper dental hygiene and really being aware and vigilant about this potential condition that occurs more frequently in people with diabetes.
Dr. Zeren, we’ve learned much today from your expertise and really it’s been such a great discussion to really understand better why paying attention to our teeth and gums is so important, especially in a person with diabetes.
For those who are listening today, I wonder if you might have some parting words for them. In terms of, if they’re encouraged or inspired to really take better management of their dental hygiene, what would be the next steps that you would recommend for them?
KZ: Certainly, just having this kind of information is very helpful for them. Assuming that they’re diabetic, they should talk to their dental professional about the kinds of treatments that are necessary; tracking of inflammation in their mouths; bleeding; any increased in probing depth, these kinds of things people should be aware of and should frankly be asking their dental professionals about.
RK: I think that it’s important for the awareness that you have shared with us today and having that knowledge to bring it up to their primary care doctors and also their dentists is important. Dr. Zeren, thank you so much for your expertise and sharing all the great knowledge that you have shared with us today. I know that I’ve learned so much and I have no doubt that our listeners have as well. And hopefully we’ll be inspired to really take good care of their teeth and prevent these complications from occurring. Thank you again for being with us.
KZ: It’s been my pleasure. I really appreciate the opportunity, thank you.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org.
We love to hear from our listeners. The email address is [email protected].
Thanks for listening. Be well and see you next time.
In Episode 37, Dr. Kalyani welcomes Susan Renda, DNP to our podcast. Susan has been a nurse for over 43 years and 34 of those as a nurse practitioner. She’s currently an associate professor and associate director of the DNP advanced practice program at the Johns Hopkins University School of Nursing. She has precepted, mentored and taught nurse practitioner students and developed curriculum to support their success. In all settings, she brings a passion for education as every moment with patients and students is a teaching moment. Her clinical history is in primary care as a nurse practitioner and diabetes educator at the Johns Hopkins Diabetes Center.
Rita Kalyani: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host Dr. Rita Kalyani at Johns Hopkins. We developed this podcast as a companion to our Patient Guide to Diabetes website. If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org
Today, we are thrilled to welcome Susan Renda to our podcast. Susan has been a nurse for over 43 years and 34 of those as a nurse practitioner. She’s currently an associate professor and associate director of the DNP advanced practice program at the Johns Hopkins University School of Nursing. She has precepted, mentored and taught nurse practitioner students and developed curriculum to support their success. In all settings, she brings a passion for education as every moment with patients and students is a teaching moment. Her clinical history is in primary care as a nurse practitioner and diabetes educator at the Johns Hopkins Diabetes Center. We are so thrilled to have Susan Renda on the podcast today. Welcome Susan.
Susan Renda: Thank you, Dr. Kalyani. I’m really happy to be here.
RK: We are really excited to hear from you today about something that I think all people with diabetes think about at one time or another, which is “what do I do in case of a diabetes emergency?” I wonder if you could start off by telling us what are the different types of diabetes emergencies?
SR: Thank you, Dr. Kalyani. I think this is something that really frightens people a lot, and the more they know about them, the better it’ll be to be able to handle these things. But I’ll go over three of the more common things that people with diabetes may have with having their blood sugars up or down or particular to their type 1 or type 2 diabetes. But the first I would mention is diabetic ketoacidosis, or DKA, as it’s commonly called. This is much more common in people with type 1 diabetes who are insulin dependent. What happens is there’s a lack of insulin and the glucose, or what we call the sugar, cannot get into the body cells and provide necessary energy.
The body starts to break down something for energy, it ends up breaking down fat and that serves as an alternative energy source. This will cause a critical imbalance in the body of what we call our pH level, how acidic or alkaline we are, and it messes with our electrolytes. We think about potassium and sodium, and we also build up something called ketone acids, which aren’t supposed to be high in the bloodstream. It is most common above a glucose of 250, which is rather high, and often illness or infection is what’s the underlying cause. People will become thirsty, have frequent urination, but then nausea, vomiting, abdominal pain, get weak, have a fruity scented breath, and also confusion. If left unchecked, it leads to really severe illness and even death, if we don’t take care of that. We watch for the beginning symptoms, and we make sure we monitor blood sugar with that.
There’s also something that can affect people with type 2 diabetes more commonly and that’s hyperosmolar hyperglycemic crisis. People will get really dehydrated from severe elevations of glucose or the sugar and with this it’s often associated with an infection. The signs and symptoms that you may see or experience are very high blood sugar— levels over 600. And mental changes: confusion, delirium, you can’t get someone to wake up, they’re experiencing maybe hallucinations, a loss of consciousness. [Their] mouth will become really dry, and there’s extreme thirst and frequent urination until they’re extremely dehydrated and [have] blurred vision or loss of vision. The dehydration also has an elevated pulse rate and a low blood pressure ,and that’s very characteristic. Fortunately, it’s not super common, but it is more common in people who are older, who experience an infection, who have type 2 diabetes.
Now the more common thing that we really try to avoid is hypoglycemia. Which can affect anyone who has a risk of a condition that lowers the blood sugar, or if they are on a particular medication that can lower the blood sugar, such as insulin or pills that may lower the blood sugar. Hypo means low, glycemia means blood sugar; that’s what we mean when we talk about hypoglycemia. With this, the glucose number, we consider that it’s going pretty low if it’s below 70, and severe hypoglycemia is less than 50. Symptoms people have usually come on pretty suddenly as the blood sugar gets below that threshold of the 70, and it’s dizziness, hunger, cold, sweat, shaking, visual changes, irritability, there can be some confusion with it. If left unchecked and the blood sugar continues to lower, there can be confusion, seizures, and then passing out. And ultimately it could cause someone to die if it’s not brought back up into a good level.
RK: Thanks so much for going through those three most common emergencies that we worry about. You mentioned diabetic ketoacidosis, or DKA, and this is something especially in our patients with type 1 diabetes can be a concern, as you mentioned, when the sugars perhaps go too high, the 250s, 300s, 400s, and really those acids that build up in the blood from breakdown of fat, which can lead to quite a bit of complications. I know in children, DKA, more commonly is the presenting symptom. Usually, children are found to have type one diabetes when they come to the hospital in DKA. How about an adult who is diagnosed with type one diabetes? How common is DKA in adults?
SR: It can also occur, but sometimes it can occur more with an infection or a sudden stress that can occur. And we have people who are diagnosed for the first time as adults with type one the common thought is, “oh, only children develop type one.” But in reality, we’ve got a quarter to a third of adults [who] are adults when they get their type one diabetes [diagnosis]. They can present with the DKA at that point too.
But you also have people who have had diabetes for a while, and then something comes along like a bad infection think about a stomach virus, that may occur and someone is vomiting and not able to take in proper nutrition and they get the energy that their cells need. There can be problems having to do with insulin access, insulin cost, need for more insulin, changes in body weight, and maybe they need more insulin and then they can suffer from DKA. And it’s important to note stress does a lot to bring on illness and to mess with how the blood sugars are well controlled. If someone is under severe stress, like someone may be in a car accident or someone can even have severe emotional stress. And when we have stress in our body, we have something that would be nice to save us. And that’s our liver gives us extra sugar. That’s fine if I’m out in the woods and a bear is starting to chase me and I’ve got to run, my muscles might need some extra sugar. If the liver goes and sees those stress hormones, it’ll give me extra sugar. But in a person with diabetes who experiences stress, they may already have an elevated sugar. And then to get that additional liver sugar on top of it, or times of prolonged stress where you can have just constant elevation of the blood sugar, then we worry more about the DKA being a possibility.
RK: Yeah, I agree. There’s so many potential factors that can go into the risk of DKA and stress is probably one that we don’t think about as much as we should. For those who might be on an insulin pump device that delivers insulin continuously sometimes if there’s a malfunction, we might also worry about the risk of this complication. What about in people with type two diabetes? Can you ever see diabetic ketoacidosis or DKA and type two diabetes?
SR: Yes, it’s more rare, but when you get an imbalance where there just isn’t enough insulin to deliver the glucose or sugar into the cells, the body is going to try to always have a source of energy. It’s going to go to whatever it can, and if it has to break down fats you can have some issues with poor nutrition that can occur with this. Alcohol can play a role as well to go and give DKA to a person who has type 2 diabetes, who we generally think won’t get it as much because they do have some insulin. But sometimes there are just situations where the situation overwhelms the ability for the insulin to keep up.
RK: Yeah I have definitely, in my own practice and I’m sure you have as well, had some people with type two diabetes who’ve had diabetic ketoacidosis, but it is much more rare, isn’t it? And can sometimes be seen in certain populations. I wonder if you wanted to just briefly comment on that.
SR: There are some types of type two diabetes that become much more insulin dependent. And they’re also, I don’t like the word, but we call it “brittle diabetes,” where the person, may be highly sensitive to insulin that you give them, but they just don’t produce enough insulin in a situation where they’re under stress or they have an infection to deal with. We have a name called “flatbush” diabetes, and there’s also in certain ethnic minorities, they may be more prone to a diabetic ketoacidosis situation.
RK: Yeah, it’s something that we don’t see that often as we’ve talked about. But this ketosis prone type two diabetes sometimes, in African Americans or even high risk ethnic minorities, we may see it, but really not something that we think of too often. By and large diabetic ketoacidosis as a complication would be something that we would worry about in someone with type one [diabetes]. What about the hyperosmolar hyperglycemic crisis that you talked about? You mentioned that is something that can be seen I think almost exclusively in type two diabetes. How are the symptoms of that or even the blood sugar levels compare to someone with DKA?
SR: In DKA, we can see the problem at much lower levels of blood sugar, like 250, 300, sometimes even a little bit less than 250. But when we start talking about hyperosmolar hyperglycemic crisis, it’s more likely to occur at pretty astounding levels of glucose. I had mentioned over 600 and dehydration is such a factor in this. People become hyperosmolar; think about salty and dry in a sense, where you just don’t have enough fluid with this. We can have people come into the hospital like a 1700 glucose with hyperosmolar, which you really wouldn’t see DKA going that high. You would see it at the much lower levels where their symptoms would come in and the illness part of the DKA would do that at a lower blood sugar with this. But both can be very severe and also lead to death. It’s really important that we go ahead and treat it pretty quickly, especially hyperosmolar.
It is more prone to happen in an older person, and sometimes people with hyperosmolar can’t relay their symptoms the way a person with DKA might be sensing the symptoms early on, especially if they’ve had it before. They get worried about it when they start having the nausea, the vomiting, the types of feelings that they would have. But instead, an older person, especially maybe they have some cognitive decline, can’t express how they’re feeling. They may be more prone to some infections, especially urinary tract infections, which can become much more serious — something called sepsis. And their blood sugars will start to rise. They’re maybe not engaging as much; they’re getting more confused; the delirium is worse; they may be having loss of consciousness. This may be something that family members or caretakers may pick up more on than, as in DKA, people can sometimes express, “I’m really sick, I’m vomiting, and I my abdomen hurts,” those kinds of things.
RK: I agree. Both diabetic ketoacidosis and hyperosmolar hyperglycemic crisis can be seen when the sugars are high. And as you mentioned, quite a bit higher, even in hyperosmolar crises where perhaps it could be going on for hours or days before someone presents with the symptoms, but in both cases, due to blood sugars being higher than they should be. You mentioned what caregivers or patients themselves can look out for. What might someone see at home when they’re checking their sugar? Or how could someone detect at home if they are either prone to this or developing this diabetic emergency?
SR: The sugars would start to go up and they wouldn’t necessarily be responding as well to insulin as they had been previously, or the person may now need insulin and not be on it in the case of hyperosmolar hyperglycemic crisis or new onset of DKA. Sometimes people with type one diabetes, who are adults, have a slower to develop type that we call late autoimmune diabetes of adulthood. And in that case, they may get to the point where they need insulin, [but] may not be on it yet. It can develop in different ways. One of the most important things is that they are checking blood sugar and seeing these trends and then also noting what else is going on in their body. Because if they know that infection, [or] stress, those kinds of things, can lead to this, [they] have to be more acutely aware and maybe even check more often. With people with diabetic ketoacidosis, if we have had them present with that, or they’ve had episodes of that, we would strongly encourage them to be checking their urine for ketones erwat that’s those little acid bodies that float around in the bloodstream that can cause so much problem. They can go ahead and test that. Anything beyond a trace [of ketones], and they have to go ahead and assess what symptoms they’re feeling; definitely get in touch with their care providers and seek emergency care. Because even giving their insulin injection may not reverse it at that point; they may need fluids; they may need to get balanced out. They may have electrolyte problems in both of these things, both the diabetic ketoacidosis and also hyperosmolar hyperglycemic crisis. A person isn’t necessarily able to monitor their own potassium and sodium and other critical electrolytes that are going on with this. I think it’s really important if someone is at any risk for DKA, that they have strips to test their urine for ketones and they know how to report or when to go to the emergency room if they have those. And that’s a really important provider communication about that.
RK: Yeah. Thanks for emphasizing the importance of monitoring blood sugars at home. That is most definitely one of the ways that we can know as healthcare providers and as patients can know as well, whether their blood glucoses are rising and whether there is a potential concern for this complication arising. And you mentioned also the urine ketone strips, which can be used?
SR: That’s assuming they’re still taking in fluids; they’re not actively vomiting; they’re not running a high fever; they’re not having confusion or changes in their whole mental status and all. If any of that, they should go to the emergency room. They shouldn’t wait because these things can accelerate pretty quickly. When you see a high on a meter, I just would want to emphasize, that a meter is a tool; it is a tool to guide us, but it is not the be all end all with this. It helps us. The first thing I would say to do is go wash your hands thoroughly, and then go ahead and get another reading and see what that looks like. Because sometimes if you had checked your blood sugar, but your hand had been on the counter where someone had spilled a Pepsi Cola, and you go ahead and check, you’re getting the sugar of the Pepsi Cola and not your hand. It’s really important to wash your hands thoroughly before you do a finger stick to check for your blood glucose. And [if] at that point, it remains high they may have already direction as to what to do if their blood sugar is high, how to administer a particular insulin dose, how to titrate something. But then after a few hours, if it’s not coming back down, especially if they’ve got some symptoms to go with it, then they need to seek emergency help with that.
RK: That’s so important to emphasize that a high reading at home is not necessarily an immediate sign of concern, but warrants further confirmation and rechecking with the techniques that you mentioned to ensure there’s nothing interfering with the testing. But if it’s still high, even after, perhaps adjusting your insulin as your provider might have recommended or hydrating yourself at home, then definitely pursuing other steps by going to the emergency room. When a person does go to the emergency room with this complication and let’s say is found to be in diabetic ketoacidosis or hyperosmolar hyperglycemic crisis based on blood work, what would be the next steps for treatment? What kind of treatments are usually offered for this?
SR: When the emergency room gets hold of the person, often the person does get admitted because it may take more than just an emergency room stay to get things turned around. Be expecting that, but that’s okay. What’s important is that a person goes home safe. The immediate problem will be attended to; really high blood sugars. They’re going to have full assessment and insulin administration if the elevation is there. If someone has a really low blood sugar, that’s the first thing that’s going to be attended to, [that] is the different methods for getting the blood sugar back up like glucagon or giving them a really concentrated sugar solution to be able to get the blood sugar back up as well. And also, fluids for any dehydration that’s there, that’s really important. If you think about insulin, it’s something that we call water soluble — it likes to swim along in our bloodstream. The way I tell patients about this is that, “if the insulin is swimming in this nice clear pool, it’s going to get to its destination quickly. If it’s trying to swim through maple syrup with a really high sugar, it’s just not going to get there as easily.” It’s going to take more and it’s gonna take the hydration. To really get the insulin working the best way it possibly can. The other things they’ll do at the hospital, though, is to really monitor the glucose and the electrolytes. These things get really out of balance when you have one of these problems and then start looking for the cause. I always say, “let’s recreate the crime.” What led to this particular awful thing happening? Is there an underlying infection? If we think about the hyperosmolar problem , in an older person, they may be more prone to it. Often urinary tract infections are at the root of it. Or if someone has flu or some kind of viral illness that can also get things out of balance as well. You want to treat that underlying infection that might be there. The same thing for someone with DKA, are they presenting with it? Is it new? Are they a new onset diagnosis of diabetes or do they have a really bad infection or have they had really recent stress that’s a problem? It’s really important, if someone has been in some kind of accident, to look at that blood glucose because the stress will raise it regardless of whether the person took their medicine before they came in or not.
And then while they’re in the hospital, the very best thing is to begin self-management education. We as providers are only a small part of the success that people have with their diabetes and management. Education is such a huge thing. This becomes something that you really need to learn about and obviously we don’t want people to go through this again. And they may be lucky that they didn’t have [a] really bad outcome with this. We want things to go much better in detecting this and preventing the problem from happening in the first place.
RK: I really like that analogy that you gave, Susan, about the maple syrup, having the insulin trying to get through this very thick, very high sugar content blood like getting through maple syrup and really trying to get that blood more dilute by giving more hydration, allowing the insulin to work more effectively, and then also looking at the electrolytes, especially potassium and sodium, I think, are ones that we focus on that can be affected in ketoacidosis and hyperosmolar hyperglycemic crisis as well.
And as you mentioned, just making sure that you’re being monitored, usually in the hospital, sometimes in the intensive care unit, but that’s okay. This is to ensure that the complication is treated as quickly as it can, and then the education, and this is an opportunity, isn’t it? For education in the hospital?
SR: Yes.
RK: Sometimes after we end a clinic visit with a person with diabetes, while we can continue to educate in between, it really is the time points when we see people, especially in the hospital for education. And you mentioned trying to find, the crime, finding the trigger. And that is so important in order to prevent it from happening again. Just to reemphasize the common triggers that you mentioned: infection, not having enough insulin on hand, stress, substance use such as cocaine, can also lead to it. There are various triggers that can lead to these complications. Really, they potentially could happen in anyone who has diabetes, but the awareness and the education and the monitoring as you touched upon are also key to ensure that they don’t occur and that we are treating people with diabetes appropriately.
Now, after people go home from the hospital, are there any new recommendations that people are given or what’s usually the follow-up after having one of these complications?
SR: After this complication, assuming that whatever the underlying problem was found. If someone is brand new to diabetes and that’s why they ended up in the problem with the hospital, they need some pretty intensive education. It shouldn’t be something that’s “put on the back burner and wait.” And plus, when someone goes on insulin, insulin does not stay stagnant, that the same dose works one day as works another day, there has to be monitoring that goes on. A person who has gone through any of this should definitely be going home with some sort of glucose monitoring, whether it’s intermittent with finger sticking, or whether there’s continuous glucose monitoring that can be done too. That’s very simple that can be done with something that you can wear up to two weeks and it’ll give you a reading on a regular basis. We want to make sure we know what the blood glucose is. They should also have; name, number, appointment of where they’re going to be seen very soon. It’s not something that — “well, you can’t get in for three months” — no, they should be seen within just a few weeks, at the most; to go ahead and see how things are going at home and what the blood sugar is doing. Because there’s going to need to be probably medication adjustment. If the person had an infection, that’s going to have to be followed up on. Has the infection cleared? Are they eating, okay? Can’t emphasize enough about a dietitian.
But also looking at some of the other things that people may have problems with. You brought up substance abuse and if someone has a substance use disorder, they need support. It is an illness and [they have] to be seen for that and to be offered whatever help we can give as a health care system, to help them not have as many problems. And if they can go ahead and get into medication assisted treatment or whatever will help them from that will prevent this from happening as well.
We also, it’s not something that we talk about a lot in practice, but finance. Because diabetes is a costly thing. We have had people go into some kind of crisis because they couldn’t afford their particular medication. It’s important to find out what sort of resources they have. Were they able to afford it? Were they able to administer it? How are they giving those injections? It’s always important to see how someone is giving the injection. Are they doing it properly? Because mistakes can be made along the way and then they’re getting less of a dose or maybe they’re overdosing on their particular medication. I would recommend — yes — you need the endocrinologist, the primary care, the diabetes provider, the diabetes educator, the diabetes nutritionist, all of these things are very important. Kind of takes a village to keep diabetes going, so very team based and everyone that communicates with each other is really important. And then, as time goes on, after these visits [we] can get much more into, after we have gotten past this immediate crisis, the wonderful prevention and monitoring that can be done to avoid everything from a foot wound to making sure eye care is done properly. Any of those kinds of things that we do on a regular basis [are] really important.
RK: I appreciate you mentioning the finance part of it, the insulin accessibility part, because this really does become a societal issue when people can’t afford their medications. And there’s been a lot of discussion over the past few years about insulin pricing and insulin accessibility in the United States and in other parts of the world. And this is something that can occur. These complications can occur when people can’t afford their medicines or are rationing medicines. I really appreciate you mentioning that because this was really the worst-case scenario. And unfortunately, I think during the pandemic you mentioned infections, the flu, COVID as well associated with higher risk of ketoacidosis, in particular new onset diabetes where these complications could be seen, hyperosmolar hyperglycemic crisis and the additional financial burdens placed during the pandemic, which may have made it difficult for people to afford insulin in particular. This really is something that can stem from societal policies, health policies as well and can help support preventing these complications when those policies are in place to allow and facilitate people to take their medications as needed. You also talked about monitoring and I do think that being able and educated to monitor your sugars, particularly after these crises are really your best defense and understanding the triggers. Sometimes, though, we don’t always know the triggers or the reasons. Isn’t that right?
SR: You can do the same thing two days in a row, eat the same exact foods, and think everything was the same, and yet your blood sugars are completely different on two different days. And that’s where I tell people it could be stress. “Oh, you were stuck in traffic on your way to work that day, and that ran your blood sugar up, or you were really anxious about an upcoming test or something that you had to do, or what if that night when you slept, your back ached?” It can be such minor, not really minor, but they’re happening to you, but they can really affect the blood sugar just because of slight subtle differences in in terms of how stress affects you and all.
That’s why it’s really important. It’d be one thing, we tell people to come in say, every three months for their cholesterol check. Cholesterol is much more stable. Your bad cholesterol, your LDL cholesterol in your bloodstream is going to be a lot more stable and take longer to change. Whereas your glucose in one hour can do all kinds of crazy things — it can go way up, it can go way down. It’s a much more fluctuating thing that really needs daily monitoring.
RK: Yeah, it really is a challenge. It can be a challenge when seemingly everything is the same, your routine is the same, yet the sugars can be variable, minute to minute, day to day, and again, emphasizing the importance of monitoring the blood sugars. For that reason, given that there is variability that perhaps we still don’t quite understand and that we’re learning more about. And stress, I think, as you mentioned, is a big one, a variability that is really hard to quantify, yet has a profound effect on the blood sugars themselves. Now we talked about the complications that can occur if diabetic ketoacidosis and hyperosmotic crisis aren’t treated, particularly the higher risk, unfortunately of mortality, especially in our older adults. Cardiovascular disease as well, myocardial infarction, heart attacks, these can also be seen. These are complications that place tremendous stress on the body. The prevention strategies that you talked about are very important. Are there any other prevention strategies that you think people can do to prevent these complications from happening in the first place? We talked about monitoring and education. Anything else that you would recommend?
SR: Sure. If the underlying reason for some of these complications is or the crises that could occur are infection, we have a really obvious one — vaccinating against preventive illness is huge. Being able to do that and also staying hydrated on a regular basis, make sure you drink plenty of fluids. And I think COVID brought to light that we all need to be much better hand washers. Think about the situation you’re going in. Masks have become much more okay, “I need to do it. I don’t need to do it.” You may be a person that you think if you are at risk for these things, yes, you should wear a mask when you are going into more crowded or close, intense environments with other people where you might be exposed to something as easily as it is at this moment that we’re recording this to get COVID, even though people are vaccinated, we have a lot less death and hospitalization rate.
For someone who is vulnerable and has diabetes, it can be a much more serious situation. The hand washing and masks and things like that, but also taking a look at things like, what is my medication supply? Do I have enough on hand if I couldn’t get to the pharmacy in the next couple of days? That kind of thing so that you have access, especially to the insulin, and also, again, the monitoring. Do you have enough strips? Do you have a battery for your meter? Are you going to run into any kind of situations where you won’t have these things, that could help you prevent illness or a crisis with the sugar going up or down in these situations?
RK: Yeah, thanks so much for going through all those things because routine preventative care, the vaccinations for sure are very important to prevent the infections. And if you do develop the infection if it can be treated, if it’s a bacterial infection, that’s great. But if it’s a viral infection, sometimes you just have to wait for it to run its course. Getting those flu vaccines, getting the COVID vaccine [are] very important for many reasons, but also to prevent some of these serious complications.
Now, turning to the other diabetes emergency that we talked about diabetic ketoacidosis and hyperosmolar hyperglycemic crisis are really unified by both being related to high blood sugars, too high blood sugars, but hypoglycemia, like you talked about, which is the opposite, when sugars are too low can also be detrimental. I wonder if we could go into a bit more detail. You mentioned that under 70 is the number where we usually start worrying about this potential complication, but what are some instances when hypoglycemia might occur? Are there certain medications that might put someone at risk for hypoglycemia?
SR: Sure. Diabetes medications, there are a lot of oral medications and also injectables and insulin that are meant to lower the blood sugar because they may stimulate the pancreas to put out more insulin. Either the body’s going to make more insulin because of the medicine or they’re on insulin itself can certainly do this. And if a person goes on a new medication, they should say, is this going to increase my risk of low blood sugar? Because it’s important to then be able to watch for it, monitor for it, and also prevent it when you’re on something. There’s also some interactions of some medications with diabetes medicines that can make them a little bit more potent sometimes. It’s important to also know when you’re being put on a new medicine — “Will this have an impact on my current diabetes medication regimen?” To see if you’d be at more at risk for that kind of thing.
But also overall we all, we just recently had January 1st and everybody makes their New Year’s resolutions and what do people say? — “I’m going to exercise more.” More activity is a big reason why people’s blood sugar may go low. It’s a beautiful thing that activity can lower the blood sugar because it can be part of your regular diabetes routine to manage your blood sugar, that you go out for a good walk, you get regular activity. And especially in type two, that can also be helpful with weight loss as well. But if you suddenly lose more weight; if you do more activity; if you’re not eating as much; “oh, took the incorrect dosage of medication;” you may find yourself with hypoglycemia. It’s important to be aware of these different things that could go ahead and lower your blood sugar with this. And some people don’t realize I’ve had people come in and say on a particular day of the week they’re more likely to have a low blood sugar. It turns out that’s the day they walk their grandchildren to the bus stop and yet hadn’t thought about how that activity may have played a role in lowering the blood sugar.
RK: You’re absolutely right. I think there are many situations where we might not think about how that physical activity for that day or the diet for that day may lead to changes either in our glucose intake or our utilization of glucose by the body, the energy utilization, which could put someone at higher risk of having this. Whether it’s the mismatch between the medications you usually take and having more physical activity or not eating as much as usual, or being on those medications like you talked about, such as insulin or that class of medications that stimulate the body to produce more insulin known as sulfonylureas. Common names for that might be glumaparide, glaburide, and glipizide that can put someone at a higher risk of hypoglycemia if they have other risk factors such as not eating as much, exercising more, or perhaps kidney complications, for instance, that prevent the medications from clearing the body as fast. It doesn’t mean that you can’t be on these medications or that you shouldn’t lose weight. But I think it gets back to what you were talking about before about the importance of blood glucose monitoring. Isn’t that right?
SR: Absolutely. The monitoring and also being aware of the symptoms of hypoglycemia. And while we say less than 70, some people will start to feel these symptoms even earlier before it gets down to 70, 80 [or] 90 because maybe their blood glucose, they’ve been used to having it be higher and it triggers those stress hormones as it drops and people begin to feel shaky; the dizziness; hunger and it’s something that happens quickly. Whereas the hyperosmolar hyperglycemia is a little bit more gradual in it’s development. It’s the hypoglycemia, you can be fine and 10 minutes later, you can have a serious problem with low blood sugar. It’s pretty fast, as the blood sugar is dropping and all. And it’s something that people around someone with diabetes should be aware of. And rather than going into a long thing of “how are you doing? Something doesn’t seem right. What can I get you? Do you need any help?” If that person is not cognitively as aware, because they have low blood sugar, they may be irritable and say, “I’m fine leave me alone.” It may be better to just, put a little orange juice in front of them and try to help them realize that “Oh, this is what’s going on.” And just to guide them with minimal words and knowing that sometimes if a person is irritable, it may be low blood sugar and they’re not really being irritable at you! The people around someone with diabetes, it’s super important [that] they know what hypoglycemia looks like as well.
RK: Yeah, I agree. Having education, not only for the person with diabetes, but also their caregivers is so important as well. When we talk about treatment for them to be familiar with that, too. You talked a little bit about symptoms. I wonder if you could just talk a bit more about maybe some of the early signs that someone might see with hypoglycemia and some of the later signs that they might see when the sugars really fall low. And also does everyone with low blood sugars have symptoms?
SR: That’s a really good question. The initial thing that someone may feel is that they just may suddenly feel hunger in the pit of their stomach, that they’re hungry, and then shakiness, slightly dizzy, a little cold sweat, those kinds of things. Some people have some visual changes, almost looks double or blurry when it goes low. Then it advances to things like irritability, and then there can be confusion and then on to the more late symptoms like passing out and seizures. You can imagine if someone is driving a car, it’s really important for them to be aware of these things and not say, “Oh, I’m 10 minutes from home. That’s okay. I’ll get home and I’ll have some hard candies or something.” They really should pull over, have something in their glove compartment. Ideally, they’re able to monitor even there. And not be driving that car unless their blood glucose is normalized at that point, because that’s really dangerous. And unfortunately, people can’t think as clearly when their blood sugar goes low, the initial symptoms of just being hungry. Okay. They go, “Oh, my sugar might be low” and they can grab for something. But as it advances, they’re not able to think as clearly to where they may do the correct thing, when it goes low. I would also put in a plug that people should have some kind of identification on them that says they have diabetes because if someone were to pass out and yet they have a medical alert bracelet, then right away they could get help, where the person who finds them could realize that’s what the problem is. And they might not delay their treatment as much if they do have some kind of identification on them that says they have diabetes.
RK: Yeah, I agree. It’s always important to have those emergency identifications on. You mentioned that the spectrum of symptoms that can occur from the earlier stages to the later stages, which might be more serious, such as seizures or coma, or even passing out. Does everyone with low blood sugars have symptoms?
SR: I’m glad you asked that again, because no, some people don’t have symptoms from low blood sugar. And it’s interesting because some people who don’t have the symptoms from low blood sugar will say, “Oh, it’s great. I don’t get the symptoms” as though that’s a good thing. It’s like the body’s smoke alarm. It’s the warning system that’s saying, “Uh oh, you need to get some sort of glucose, or sugar source into your body at this point”. But people who have frequent low blood sugars, after a while, the body just gets tired of responding, to put it no other way and what’ll happen is that you don’t get that same robust response. The person who used to feel it as it was going from 80 to 70 and who was very sensitive to their low blood sugar may have immediately gotten the shakiness and the hunger and the cold sweat and all. And then over time, if they keep having them, it dulls the body’s response. They may say, “Oh, I can be 40 and feel absolutely fine.” But the next step after 40 would be to pass out or have much more serious problems happen. We want to avoid frequent low blood sugar. We want to avoid low blood sugar, but frequent low blood sugar can dull our warning system and make it much, much more dangerous. We should be monitoring on a regular basis. And if someone has a continuous glucose monitoring device, it’s nice because there can be alarms that go off to let you know it’s dropping rapidly or dropping below a certain level, so that you can go ahead and respond and not let it get as low as it had been. And then we’ve even found over time, the fewer low blood sugars you have, the more you respond to it much earlier, we can begin to get rid of that insensitivity or hypoglycemia unawareness, as we call that.
RK: Yeah, those alarms are so important, especially for people who might have recurrent low blood sugars or have low blood sugars at night when they’re sleeping to be woken up when those sugars are falling. And as you mentioned, if you have hypoglycemia repeatedly, you might develop this hypoglycemia unawareness eventually where you stop having symptoms when hypoglycemia starts to occur. Again, underscoring the importance of making sure that it’s detected and monitored and also treated. Also our older adults who may not always have the same symptoms with low blood glucose as well, may not have detection of hypoglycemia as readily. Having the monitoring for them as well is also very important. Now you mentioned some treatment. I wonder if we could go into a bit more detail about how does someone who has hypoglycemia treat their episode, what are the usual recommendations?
SR: First, a person who has any chance of hypoglycemia should never be anywhere without access to some kind of sugar source. So we have something that we call the rule of 15, where it’s 15 grams of carbohydrate, which is what turns to sugar in our body. And we do that and then we make sure we recheck in 15 minutes with this. Things that are equal to 15 grams of carbohydrate would be like three glucose tablets that can be in a little canister, that’s very easy to carry in a pocket or a purse or glove compartment, any of those places; a tube of glucose gel; or four ounces of juice; or soda, that is not diet soda, like real soda, you can have six ounces of that. We often recommend for health wise, like for a pregnant woman, to have six ounces of milk because milk has something called lactose, which is a type of sugar in it. A lot of people who don’t necessarily have glucose tablets or tube of glucose gel and rarely get hypoglycemia, they might carry hard candies with them three to five lifesavers or a lot of people have those red and white peppermints that are wrapped up candies, three of those. I think the problem is that people think that one probably contains a lot more glucose or sugar raising capacity than it does; it is important to get three of them in. What won’t work as well, but is delicious is chocolate and ice cream. But the problem is that it has fat and protein in it, it’ll reduce the speed of sugar absorption. Having a chocolate bar may not be as effective as having the hard candies or a little bag of Skittles. Think about at Halloween time, all the snack sizes, hard type candies and things. You can grab one of those from the grandchildren or the kids and make sure that you have that on hand. But people really should not leave the house or be anywhere. And I have people come in for appointments and they say “I knew I was going to be here.” Okay, but what happens when you’re walking from the car, you drove here things like that, always have something with you. And when someone has a glucose, it’s really low, like less than 50, it may take double that. They might have to have not 15, but 30 grams of the carbohydrates to try to get the blood sugars back up. And then as it’s beginning to work, what will happen is it takes a little bit to absorb. And as I say, it’s really easy to eat through the pantry or the refrigerator while you’re in that sort of sense of doom with the low blood sugar it doesn’t work. immediately. That’s why we say 15 minutes, but really at 15 minutes, you should definitely see the blood sugar going up. Things should be going better. If it’s not going up, then you want to give 15 more grams of carbohydrate and then think about what the cause is; maybe you took the wrong kind of insulin. You took your long acting instead of, or short acting instead of long acting late at night or whatever, or you read the pen wrong or the syringe wrong and you upped the amount of what it was, or maybe you were just really busy and you ate a fast lunch and then did a lot of walking around. Think about that cause sometimes the hypoglycemia that you experienced, and you go, “wow, I didn’t eat my whole lunch” or, “Ooh, I think I took my dose for a larger meal than for a smaller meal.” You’d want to make sure that you have a small snack. like peanut butter crackers or cheese and crackers, something with a little bit of mix of foods, not just straight carbohydrate to go ahead and try to level things out so that the blood sugar doesn’t continue to go down. But be on alert after you have a low blood sugar episode, because you don’t know if the medication that’s working in there is continuing to work more than you need it. And just because you get yourself back from a low blood sugar, don’t think that it’s not going to happen again, maybe over the next hour or it can occur again. And again, I call it recreating the crime. Figure out what exactly happened to cause this low blood sugar? As far as the wanting to eat everything in the refrigerator or the pantry, get your 15 grams in, sit, maybe have a little drink of water, think about what the cause was. It does take a little distraction because, I think what happens more often than we like to see it, is that someone is very afraid of the low blood sugar. It’s stress hormones; you get scared. It’s as though as you saw something scary or something scary was chasing you. You have that same feeling of panic and that’s part of the symptoms. You’re not thinking about what your blood sugar is going to be in half an hour. You’re thinking about how do I get it back up? You may eat a whole bowl of grapes and just keep eating things and eating things. Often we’ll see things like a 225 blood sugar after something like this occurs.
RK: It is so important to treat right away, as you mentioned, with those quick acting glucose sources, but not over treat. I think is what you’re talking about because it will take a little bit to work, but in the moment, it can be very scary, to see that sugar dropping, but it will come up eventually. It’s important to know that what we call that rebound hyperglycemia, the going from the low to the really high, can also be seen if you do eat the whole pantry like you talked about. So I appreciate you going through those. How about glucagon? When would someone with diabetes need to have that prescribed? And what should family members know about giving their loved one’s glucagon, if they are passed out from having a low blood sugar event?
SR: Glucagon is given in an emergency situation where the person is passed out or unable to swallow [or] communicate with you, and it’s important for someone who’s prone to hypoglycemia on insulin or has had these really bad low episodes or hypoglycemia unawareness that there is glucagon available. But it’s not the kind of thing that a person administers to themselves. This is an emergency thing where the family, friends, [or] co-workers get involved. And if they find the person in this kind of state, they can go ahead and give it. Now, glucagon is given either in an injection form or an inhalation, a spray into the nose. But what glucagon does is that it stimulates the liver to produce glucose and elevate the level. Which our liver again comes to our rescue when something is going on and we need extra glucose, that stimulation is really important. If that person is unable to safely ingest or swallow a sugar source, or they’re passed out, you inject the upper arm, thigh, or abdomen, or spray the inhaled glucagon into the nose as you’re calling 911. You hope that’s going to fix it, but it may not completely, or it may be some other cause and you’re not sure exactly what’s going on. You should be calling 911 if you get to the point where you need that kind of thing. But an important thing to do as well is that if someone is on their back, you want to roll them on their side. One of the side effects of glucagon is nausea and sometimes vomiting. And if that were to occur, you wouldn’t want the person to be on their back because something could happen called aspiration — where they inhale anything they vomit would go back into the lungs — you put them on their side and you wait with them as 911 is coming. So that would be the best way to use glucagon. It also expires relatively quickly compared to some of our medicines. As far as where it’s kept, it’s important for the person with diabetes to check the glucagon expiration, have it in a place where the people who would be most likely to be around them, to find that them in that situation, would know exactly where to find it and how to use it. And to review how you would use the injection, or how you would use the nasal spray ahead of time when things are nice and calm and not in a serious situation.
RK: Yeah, I think that’s a really important point, especially since glucagon does need to be mixed. It’s usually a powder. And we do have a video on the website, which goes through how someone’s loved one could give glucagon and make sure that it’s prepared appropriately in an emergency situation. It’s important to review that ahead of time because in the heat of the moment, it might not be something that you can look up right away. Thanks for going through all those specific precautions and things to think about while giving glucagon. I wondered if you could just briefly touch upon sick day management as well, because that might be something more commonly that people should be aware of. And when we talk about sick day management someone who might be managed on their diabetes regimen; their sugars are otherwise in the goal range, but they get an infection. Let’s say they get COVID, they get the flu. What kinds of things could they do to prevent one of these diabetic complications, whether it’s hypoglycemia or hyperglycemia from ketoacidosis or hyperosmotic crisis from occurring?
SR: Yeah, that’s a really good question, because we all get sick at some point. And if someone doesn’t have diabetes, okay, we ride it through and we’re doing okay. But when someone has diabetes, again, it’s stress and it can raise the blood glucose. In a few people, it can lower the blood glucose when they’re sick. You should have basic supplies on hand and also a plan. This is important: I would talk to your provider or your educator about, “Okay, if you get sick, what should you do?” First of all, you should have numbers handy in case you need to call specialists, your primary care, or any other people like that. When we’re not feeling well, we can’t find things as well a lot of times. How things are organized—even if you have to have some things in a little box—as far as your sick day plan.
When we’re sick, we may have an increased demand for our medicine or our insulin because the blood glucose goes up. But what can happen is you don’t feel good; you don’t want to eat anything; you may have nausea. And in that case, I’ve heard people say, “I just didn’t bother taking my insulin or my medicine, but then my blood glucose was very high,” because the stress would raise it, whether or not you’re eating. Even not eating is a stress to the body. And you can sometimes drive the sugar up, by the liver putting out extra sugar. The way you’re going to know about this is you’re going to monitor. It’s important to have plenty of your supplies for monitoring. And people may be just monitoring once a day. In the case of illness, you may need to do it more often, like every four to six hours, depending on what the blood glucose is doing. If you’re not monitoring, you’re not going to figure out if it is going up or if it’s just beginning to head low, where you could thwart a low blood sugar reaction. Have plenty of monitoring supplies, have your medicines on hand, [and] have numbers of who you would need to call. And the other thing with what we mentioned about the diabetic ketoacidosis or the hyperosmolar is dehydration. So have plenty of fluids, non-sugar fluids, lots of non-sugar fluids on hand to make sure that you stay hydrated. Go ahead and drink regularly at least every hour, be drinking on a regular basis to try to stay hydrated. Make sure that you are urinating on a regular basis, [and] not dizzy when you stand up, which could indicate some dehydration symptoms. Also, when people are sick, they don’t feel like eating heavy meals. Think about some light things that you could eat and especially with illness. Like some things that are good are popsicles [or] other forms of clear liquid, [like] soup broth. Lots of soups can be a lot easier to take when you are sick. But with the sick day rules, also if you have glucagon, that’s helpful if it goes low. You may look and go, “Okay, I’m monitoring my blood sugar more frequently. Oh. It’s going up. Let me go ahead and give more rapid acting insulin.” Just be careful and watch how it goes down, because you can get in a situation of what we call insulin stacking, where the insulin that you just gave, you haven’t given it at least two to four hours to really go to work. So, there’s something called a three-hour rule for the rapid acting insulin, where you want to go ahead and see how it works. It’ll start maybe in 15 minutes, it’ll peak in an hour, but it’s going to continue for two to six hours. The three-hour rule prevents you from insulin stacking where, “Okay, I had insulin in the last three hours,” but any questions about elevating blood sugar and you’re having a hard time getting it responding, you’ve got your numbers, you call your provider, you get answers to these questions. And also, let family members know when you’re ill, especially if you live alone. Maybe they can check on you a little bit or people can go and give a door drop of some supplies that you might need during that kind of thing. If you find that you’re having one of these stomach problems where you’re vomiting, you really shouldn’t vomit more than once in four to six hours. [If] you’re vomiting continuously, you really put yourself much more at risk of a serious complication. And if that’s the case [go to] urgent care or the ER, and they can maybe reverse some of that nausea and the vomiting and get you back to where you are able to hydrate yourself. Really think about — “I’ve got to get in fluids. I’ve got to get in fluids” with those kinds of things.
RK: Thanks for going through all those important aspects of developing a sick day plan. And I think that’s really the key—having a plan in case of emergencies and talking about it with your health care provider—”If I were to get sick, if I were to have an infection, what should I be aware of? What should I have on hand? What should I do?” So that when those situations do occur, because, as you mentioned, we all get sick at some point, you’re prepared and know what to do. And at the very least, have the numbers to call to get more information or to talk to your health care provider. [It’s] really important to think about that proactively to prevent the complications down the line.
Well, Susan, it’s been so great to have you here today on our podcast. And I wonder if, in parting, we’ve talked about a lot of pretty scary complications today that might make us feel a little hesitant to have our diabetes treated. And I don’t think that’s the message we want to get across today because clearly, we want diabetes to be treated optimally and safely. But what would you say to our listeners who might be a little bit fearful of these complications? How can they ensure that their diabetes is being treated safely and appropriately?
SR: Yeah, that’s super important. I think the really cool part of it is that the patient can play such a tremendous role in this and have tremendous control over what happens. So you want to get your visits on a regular basis and be seen appropriately for the diabetes. Make sure any questions that you have get answered. And as well, I know we have mentioned the word monitoring multiple times. When you come into our offices, yes, we can go and find out information about you, but if we send you out, you really don’t know what’s going on a regular basis. It’s like driving a car down the street with a really dirty windshield. You’re on the road, but you don’t know if you’re about to hit the fire hydrant or a pole or whatever. But when you monitor your blood glucose, it’s almost like clearing that windshield. Now you can see where you’re going, “Oh, look, my blood sugar was this morning and is now here before lunch it’s this level.” You have a much better, more intimate way of knowing what is going on with yourself with this and recognizing what the symptoms are. The more [you monitor], the less likely you’re going to have problems with all of this. So monitoring is extremely important — and get diabetes education. There are diabetes educators that can spend a lot of time and go over many of these things and help with the fears.
I want to really end on the positive note that we have a lot of knowledge about diabetes now. We also have the ability to help empower you with education, [and] much better medications than there were, when my grandmother developed type one back in the thirties. So much better and you can live an incredibly healthy life through a great lifestyle, monitoring and the better medicines we have, having a good partnership and relationship with the people who take care of you and pulling in your village of your family and friends to help assist with whatever they may be able to help with and that you feel comfortable sharing with.
RK: Thank you so much again, Susan, for being on our podcast and really highlighting the importance of being aware of these complications and also prevention and treatment. We really appreciate your expertise today.
SR: And I really enjoyed being here. Thank you so much.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit HopkinsDiabetesInfo.org.
We love to hear from our listeners. The email address is [email protected].
Thanks for listening. Be well and see you next time.
In Episode 36, Drs. Kalyani and Marci Laudenslager, return to dicuss weight management and treatment options for obesity in this second podcast in a 2-part series. Dr. Laudenslager is an internal medicine and obesity medicine physician in the Johns Hopkins Healthful Eating, Activity & Weight Program. She is a Diplomate of the American Board of Obesity Medicine and her clinical expertise is in obesity and obesity-associated disorders. She was recognized as a “Top Weight Management Doctor” by Baltimore Magazine in 2021, 2022, and 2023. Dr. Laudenslager is a clinician educator and researcher – her work is specifically focused on the educational gap that exists in obesity medicine. She teaches learners at all levels of medical training and designs curricula aimed at improving obesity medical education. Dr. Laudenslager received her doctor of medicine degree from Drexel University College of Medicine. She completed her internal medicine residency at the Hoftra Northwell Internal Medicine Residency Program where she additionally served as Chief Resident. She became a Harvard Macy Scholar during her year as Chief Resident. Dr. Laudenslager received her Master of Health Science degree from The Johns Hopkins Bloomberg School of Public Health and completed her General Internal Medicine Fellowship training at The Johns Hopkins University School of Medicine.
Dr. Rita Kalyani, MD: Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes. I’m your host, Dr. Rita Kalyani at Johns Hopkins. We developed this podcast as a companion to our Patient Guide to Diabetes website. If you want a trusted and easy to understand resource for diabetes, or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org.
We are thrilled to welcome back Dr. Marci Ladenslager, who will be talking about weight management and approaches to treatment. Dr. Laudenslager is an internal medicine and obesity medicine physician in the Johns Hopkins Healthful Eating Activity and Weight Program. She’s a diplomat of the American Board of Obesity Medicine, and her clinical expertise is in obesity and obesity associated disorders. She received her Doctor of Medicine degree from Drexel University College of Medicine and completed her internal medicine residency at the Hofstra Northwell Internal Medicine Residency Program, where she additionally served as chief resident. She became a Harvard Macy’s scholar during her year as chief resident. Dr. Laudenslager received her Master of Health Science degree from the Johns Hopkins Bloomberg School of Public Health and completed her general internal medicine fellowship training at the Johns Hopkins University School of Medicine. Welcome Dr. Laudenslager to our podcast.
Welcome Dr. Ladenslager
Marci Laudenslager, MD, MHS, DABOM: Thank you for having me. It’s such a pleasure to be here.
RK: Now, moving on to treatment, how do we address overweight and obesity in practice and specifically in people with diabetes. As I mentioned, this is a focus throughout our continuum from prediabetes to diabetes. We, we talk about lifestyle management all the time. But what does that really mean for you as a weight management specialist and obesity specialist?
What are the factors that we should be considering, or a person with diabetes should be considering, in their lifestyle management?
ML: Nutrition is something that we talk about a lot as is activity, but we mentioned a little bit about this earlier, sleep, stress, mental and emotional health, all such very important facets of, of lifestyle management. I think that one of the first things that I do in my practice is sort of, unpack what we talk about culturally and separate that from the scientific evidence. That we’re not so anchored in just a nutrition and activity space. We really understand all facets of lifestyle because. Sleep and stress, especially are very, very important and just as impactful on, on body weight as the other things that we’ve been talking about.
RK: I agree. I think that these are things we don’t talk about as much as we should. And we are beginning to recognize, I know for us in diabetes care, the importance of screening for sleep disturbances and, stress and mental health, and how that can impact also obesity and weight management. You talked about nutrition and exercise, which we have recommendations on routinely for, for people with diabetes, but I wonder if you wanted to talk a little bit about the societal view of obesity and perhaps the stigma that might be associated with that, that makes it difficult for people perhaps to accept and address in themselves. One of the things I’ll say, if I could, that I hear from my patients is, “I feel like I’m to blame, that it is my lifestyle habits that led to this.” And I think that also contributes to the challenges of managing weight. I just wondered, what you would say.
ML: I think the most important thing that I can say about that topic and about the way that we view obesity is, we really need to separate the cultural dialogue on this from the scientific evidence, so obesity is truly this chronic, highly complex metabolic disease. This is not a lifestyle choice. I think that culturally we’re taught to feel that and it’s difficult to unlearn some of what we’re taught culturally. It is very hard, and I think going back to those etiologies that we discussed before. There are many etiologies of obesity and many, many, many driving factors for weight gain. Understanding that I think is an important place to ground yourself and you’re thinking about experience with body weight. It goes so far beyond nutrition and activity, and it goes so far beyond that oversimplification of obesity as just a math equation; calorie balance in the day. It is very much not that our fat tissue is so dynamic, where you were dealing with a chronic metabolic condition that is based in hormones and there are so many of them and they talk to each other in a complex way. I describe this to folks in my practice as, a lively discussion amongst family members at Thanksgiving. There’s a lot of talk back and forth. There’s a lot of shouting over people. It really is complex the way that hormones interact in an obesity state. Beyond that, there are also these important. metabolic adaptations to weight loss that I think we don’t talk about enough. And what I mean by that is as the body is losing weight, our hunger hormone, ghrelin, goes up and our satisfaction hormones of which there are many, they go down. And that means that we are hungrier, and the body basically gets fewer calories in our calorie budget for the day, and that makes weight loss on its own difficult, but it’s also difficult to maintain weight loss for this reason, because of what’s going on with those hunger and satiety hormones.
As we’re losing weight, generally hungrier, and our metabolism rate goes down. The driver of our metabolism just so that folks know is really our muscle mass. As you’re losing weight, it’s important to maintain your muscle mass as you’re losing body fat, because if you’re losing your muscle, you lose your metabolism in a sense. You can simplify it that way. If your metabolism rate is going down, that makes long term weight maintenance very challenging. I think the biggest misconception about obesity is that it’s a lifestyle choice – it is not. That it is simple – it is not. That there are these quick fixes – there aren’t. Lots of different threads of dialogue out there. And I think, the obesity space is unique in medicine and that there’s a lot of misinformation and disinformation out there so that when you yourself are a patient at home looking for we used to help yourself through this.
It’s hard to unpack, what’s legitimate and what isn’t. It’s a really crowded space. And it’s really important to talk with your health providers about this so that you can understand for you as an individual, what are those things that are driving weight gain for you? I can’t tell you how many times I make a diagnosis of something like polycystic ovarian syndrome. There are genetic factors that are at play that, folks hadn’t talked. about before. It really is complicated. And for that reason, seeing an obesity specialist or an endocrinologist is really important to understand what those driving factors are. That is the place where we start. Sometimes it’s something as simple as, “Hey, I have a really, really, really challenging sleep problem. I’ve had insomnia for decades and I take Benadryl every night to go awake.” Well, we have a major sleep issue there, which is going to cause a problem. And Benadryl is inherently waking promoting.
And so, somebody might be scratching their head at home thinking, “Hey, what’s going on? I’m highly active. My nutrition is super balanced. What is driving weight gain?” And the answer there is sleep. Number one and taking a weight gain promoting medicine Benadryl without knowing that that’s the effect the medication has.
It is highly complicated. I think really, really emphasizing that lifts the burden of responsibility. This is not a place of fault. This is a complex disorder that really needs to be deeply understood so that we can address those things that are driving weight gain and help folks move forward in their health.
RK: I think one of the things that I hear from what you’re saying and I think that maybe gets lost in the conversation, sometimes when we talk about weight management is the mental approach- what our psychological mindset is to approach some of the challenges, like you mentioned with stress and how it affects weight.
I wonder if you could talk a little bit about that. Cause I think there are many programs out there that really leverage that in terms of their ability to lead to weight loss. Could you talk about the role of some of our mental thinking approaches to weight management?
ML: We can talk about stress and anchor there for a second because I think that that does share real estate with a lot of other common topics and emotional health. Stress is like transient diabetes. Think about it that way when we’re under high levels of stress, especially if this goes on for a long time.
Our stress hormones, we can think about cortisol as a common one. It has many friends, cortisol and company. They all go up that can cause insulin resistance as well as changes in some of those other satiety metabolism hormones. The net effect of that is typically a decrease in our metabolic rate and an increase in our food intake because we’re much hungrier.
That is sometimes centered around this increase in what’s called “the hedonic drive,” which is basically that emotional feeling around foods. It’s centered in the the reward pathway. The emotional reward the body receives from taking in certain foods and that hedonic drive, that place of thinking that is more geared toward palatable foods.
That’s what it searches for basically comfort foods all of that taken together before under high levels of stress. Cortisol goes up, a whole bunch of other things happen hormonally, our metabolism rate suffers, we’re hungrier, and we’re hungrier for specific things. Those comfort foods that are typically those high calorie, ultra processed foods.
And with that, we typically can get an increase in that visceral fat as well. Thinking about stress that way is important and connecting that to sleep. We can do that easily as well because the body is see sleep disorders as a form of stress in a way if we’re not getting adequate sleep, our hunger hormone, ghrelin, goes up and our satiety hormones, things like leptin, they go down we’re hungrier, we’re less satisfied with the foods that we’re eating. One of the things that I typically use in my practice; this is a nice tool for, where do I start with managing some of the emotional connections to food; and let’s use stress as an example here: if I know for myself that stress is something that leads to cravings and, man, I’m always reaching for this particular food. How do I manage that? Think about something you can do and a few seconds, something you can do in a few minutes. And then another thing you can do in a few hours or the better part of it, the day and give yourself some indoor and outdoor options and write them down because that makes things a little bit more concrete. If we’re just thinking things in the mind, it seems a little bit more abstract and it’s hard to really use those things as a tool later think about those things with great intention and write them down and then the next time that you’re feeling stressed think about the environment that you’re in: Okay, I’m at work. I can’t do my outside thing But, I told myself that maybe one of my things was listening to a little bit of of music or doing like a puzzle or something like that., you have to find the thing that really speaks to you. Maybe it’s just taking some deep breaths because I’m in a meeting and I can’t do any of those other things.
So find something that can be there for you no matter what environmental situation that you’re in. And over time, the brain will start connecting those new activities to, hey, these relieve stress as well. It isn’t just that connection to food that exists that starts to disintegrate, and the brain learns a new, healthier habit.
Over time, this does take practice. Let’s take practice that it takes time. We can, number one, help with our levels of stress because we’re giving ourselves tangible tools for how to manage things. And we’re thinking about tools that are non-food or drink related we’re separating food and emotion in the brain, and that can be really helpful as well.
RK: Thanks for sharing those tools that you use in your practice because I think– and we’re going to talk next about the lifestyle changes and the medications, which are of course, very important–but what you are describing, which is the emotional reaction to food and the cravings and stress is very important and, for some people, may be a main driver. And so, I think that strategy of thinking of healthier habits that can replace the reward, the emotional reward, that people associate with food over time can be learned and I think that’s a practical tip that anybody can do in any environment thank you for sharing that.
Talking a little bit about lifestyle the logistics of that let’s start with diet. Is there a right diet for weight loss in diabetes or without diabetes? What would you say?
ML: Yeah, I love this question because this is probably the number one question that comes up clinically. Is there a right way to eat? And the short answer to this is no. And if we look at decades of research, and we look at those studies that have taken specific nutrition plans, fad diets especially, line them all up, put them head-to-head and see which one is the best for weight management, at the end of the day, they’re all the same. It is the sustainability of a nutrition plan that is going to help folks be successful long term. I think when we’re talking about diabetes, there are a number of evidence based based nutrition styles that can help lower blood sugar. And I’m thinking about, a lower carbohydrate diet. And that means a lot of different things. Generally, can think about that as being 25 to 45 percent of total daily calories from carbs, but again, there are lots of ways to follow a lower carb plan, a plant based. Diet can also be helpful in lowering A1C or blood sugar that’s vegan or vegetarian, both of those will be effective in that way. And the Mediterranean nutrition style can be helpful. But I think that, what all of those have in common, when we think about, plant based, Mediterranean the DASH diet is another nutrition style that comes up a lot in research studies and in health. And that stands for the dietary approaches to stop hypertension.
So that’s one we usually use in the blood pressure management space. But if we look at the common principles to all of those evidence-based nutrition styles. One thing stands out and that they’re all whole foods based, they emphasize lean proteins, fruits, veggies, whole grains, and they minimize things like sweets and ultra-processed foods.
There are so many healthy, balanced evidence-based nutrition styles out there. I think this is where, especially if you are managing diabetes, it’s really important to meet with a dietitian or talk to your provider about a personalized plan, knowing that, yes, this whole foods approach, that can be applied in a number of different ways, but there’s no right diet per se. It’s really about finding that sustainable lifestyle plan that will support you in your health goals long term. It’s the sustainability part of it that really is more important.
RK: I think that the sustainability part will be a theme as we talk about medications and potentially surgery as well in terms of getting the weight off but keeping the weight off as well. Moving on to exercise, you mentioned the importance of ensuring that even with weight loss, that the muscle mass is preserved. And as you noted that if you have a calorie deficit, you’re going to lose both fat and muscle and it’s important to maintain that muscle mass. What exercise regimen do you usually recommend for people to maintain that healthy balance of muscle when they’re losing weight?
ML: I typically start by asking folks, where they are in terms of their health goals. If we’re in the weight loss phase, cardio will tend to lower body fat more so than resistance training. If we’re really anchoring in that weight loss maintenance phase, then exactly as you say, that preservation of lean muscle becomes really important because that helps support our resting metabolic rate.
So activity will increase insulin sensitivity and leptin sensitivity. These are all things that in the brain can help lower our appetite and keep our metabolism healthy. All activity will help with cardiovascular risk or heart health. It will help decrease inflammation. It really is about picking the style of activity that matches with what, your health goals are right at that moment. If we’re working really on weight loss, I typically emphasize cardio at the beginning, maybe more so than resistance training. And then, we flip things around when we get farther down the line. We want to really be able to maintain that weight that you’ve been working so hard to lose they’re both important. They just act differently. It’s important to know though that weight loss from exercise alone is typically modest. We use activity and we partner that with, other lifestyle strategies like medications, like surgery, depending on, that particular individual, but knowing the benefits of activity overall. You can use them in those phases appropriately, but at the end of the day, pick something that really, sparks joy, because I think the one thing that can be a barrier to activity is thinking about, what it should be. What’s the ideal? There’s no “should.” There just “is”. What do you like to do? What would you like to do more of? And starting from, from that space, what are you able to do? It really is thinking about the individual person and what brings them joy, what helps with their energy, what helps with their sleep. Activity can do all these things. Getting outside and just moving your body can help with mental and emotional health. It can help with sleep health. Thinking about it as a lifestyle strategy that just boosts overall health and wellness of quality of life- that’s usually where I put my focus and we start where we start, and you can gradually build up over time or change things depending on what the health goals are.
But, when it comes to muscle mass, it is important that we preserve that throughout the journey for, those metabolic reasons we were talking about. We want to make sure you’ve worked so hard to lose body weight. We preserve your muscles so that you can keep the weight off long-term.
RK: Really it should be activity that aligns with the individual’s own priorities in terms of what they want to do. And then the balance of cardio exercise to muscle strength and exercise as well, which should be individualized or really aligned to where they are in their weight loss journey.
Moving now to medications, which is really in many ways, the hot topic these days. What medications are available for people who have tried these other strategies? Let’s say that lifestyle strategies, the emotional regulation, the stress management, and they’re still not successful. And who is eligible as candidates for the weight loss medications?
ML: There are a number of medications available to help treat overweight and obesity, and they range from pills that you take to injections. I think that those are getting a lot of attention right now. We can certainly talk about those. When we talk about oral medications for weight loss; pills that you can take. The oldest one that I can think about is phentermine and that was FDA approved for weight loss in 1959 this one has been been around for a very long time that is a mild stimulant. It will act as an appetite suppressant. There are combination pills. One that actually includes phentermine – a medicine called Qsymia, which is a combination of phentermine and topiramate; also goes by the name Topamax. Another combination pill called Contrave, which is also the mix of 2 medicines: bupropion and naltrexone. Those can give a little bit of metabolism support and they will typically be experienced as an appetite suppressant for folks, but it is doing other stuff in terms of metabolic support, a mild stimulant effect. When we get to the injection medicines, these are the newer generations or weight loss drugs. And the one that I’m thinking about in particular, are those ones that work on GLP1. That stands for “Glucagon-like Peptide One”. These are the injections that you probably see on social media, on the news. These target a really important satiety hormone, GLP1’s. That helps manage weight but also helps regulate blood sugar there really are a number of options or more options I think than folks think about actually, because some are more popular than others right now. They’re just getting more media attention. Doesn’t mean the other ones are not effective. It just means they’re not getting as much media attention. But weight loss medicines have been around for a long time and, talking with your physician about which one may be right for you, I think is important because there are a number of contraindications to certain medicines for example, folks with certain heart conditions wouldn’t be candidates for some of these stimulant medications, you have to know which one is the safest for you to take and which one is going to be the most appropriate. Some of the ones that we talked about can really help with cravings, or hunger at night, or we can use them and tailor them to hunger that happens at a very specific time of day.
So all of that is to say, there are lots of options that can be really tailored to the individual experience and that will be safe for that person. That really is the most important thing. What’s going to be safest and what’s going to be the most effective for your particular experience with your health and your body weight for folks who are candidates for these medications. It’s those who have. a BMI of 30 or greater, or those who have a BMI of 27 or greater, generally speaking, plus a weight associated condition, like diabetes, like hypertension. Although there are others that fall out of, those definitions, that’s the most classic definition of, who can use one of these weight loss drugs.
So, I can talk a little bit more about those injection medicines, because I think that that comes up a lot. I think the one thing that I get asked the most is, why do we use these medicines, the injection ones per se, the GLP ones? Why do we use those in obesity? They’re classically used in diabetes. Why do they also work here? In obesity, post prandial GLP 1, is decreased all of that means the sense of satisfaction that you get during or after your meals is impaired. That is what happens as body weight goes up when we use these injection medicines in obesity, that dysfunctional satisfaction signal is corrected. You appropriately experience fullness with your meals. Those medicines will also increase your energy expenditure, how many calories you burn, going about your day-to-day life. And they have the same effects that are beneficial in diabetes. They affect those hormones that regulate blood sugar.
Diabetes and weight management share hormones in common. And when we use medicines that target, target those certain hormones, that’s why one medicine can work in a bunch of different spaces. It really is important to highlight that, weight management. Heart disease, liver issues, diabetes… there are so many hormones that are shared and that’s why those medications are shared in those different spaces. And that’s what we want from a drug we want it to be impactful for as many things as possible. That’s why you see things like semaglutide; it goes by the brand names Ozempic and Wegovy. That’s why we see it being used for lots of different things because there are these shared hormones with different disease states and that’s why we get benefit across the board in a lot of these different areas.
RK: And you mentioned Ozempic or Wegovy, which is semaglutide some others just to round out the class might include dulaglutide or brand name Trulicity or liraglutide (brand name Victoza or Saxenda). These are medications, like you mentioned some are approved for diabetes and some are approved at the higher doses for obesity. A question that I often get asked is when you use these medications for obesity, any of the medications that you’ve talked about, whether GLP-1s or the other medications that you talked about, how long do you continue on them? And what happens when you stop? Do you regain that weight?
ML: With medications for weight management, I typically frame these as chronic use medicine. Medicines that you’re going to be on long-term because obesity is a chronic metabolic disease, and I view it just like Type 2 diabetes or hypertension. We use hypertension, for example, some folks will, follow the lowest salt diet you can even think about. But there are other things in their family history, their genetics that just predispose them to having a higher blood pressure they need a blood pressure medicine to manage that; to couple with their lifestyle efforts. That makes things better. And if down the line, we take the medicine away, what’s going to happen? Their blood pressure is going to go back up because those underlying things that we can’t control, like their genetic factors are still there with weight management, it’s important to think about the chronic metabolic disease definition and center the way that we use medications in that space. They really are meant to be used long term. Not to say that can’t go off of them, down the line, you absolutely can, but you need to be working with a weight management specialist to do that. The one thing that I think gets confusing in the current cultural conversation around these newer medicines in particular, is that there is a concern that if I stop this medicine, is there a rebound effect? Am I more susceptible to weight regain because of something that the medicine is doing. And the short answer to that is no, it really is about understanding what things are contributing to weight gain in the first place and are they still there? For someone with polycystic ovarian syndrome, that’s something they’re going to have for a while.
So using a medicine to help control that will help manage their weight. And if you go off of that, Weight management medicine than the weight gain that comes with polycystic ovarian syndrome will come back So it is more nuanced in that way, for someone who has Insomnia someone who is under chronic stress for someone who had like all of the etiologies those causes of weight gain that we Talked about before if those things are still there. They will continue to contribute to weight gain I think a really important example of this is those who are on medicines that cause weight gain, and they need to be on them. Insulin is one example, but there are many others. There are certain cancer medications that cause weight gain, and we of course need to continue those.
There are mental health medications that folks need to be on, and they cause weight gain, but they need to continue them. When that’s the case, a weight loss medicine is critical because the thing that’s going on in the background that caused weight to go up in the first place is still there. There’s nothing inherently about the weight loss medicine that creates this rebound effect. It’s just about understanding what affects weight gain. And if those factors are still present, you take the medicine away. Weight will come back on for those reasons. It’s a little bit subtle and nuanced, but yes long-term medicines for most of these is typically the way that I use them.
RK: It makes sense that you really do have to address the underlying factors contributing to why you’re gaining weight in the first place. And you mentioned that the newer agents, particularly are really ones that can be used chronically especially if there are underlying factors.
But as I understand that the stimulants are really designed to be used just for a few months at a time. Is that right? Some of the older medicines?
ML: That’s a state-by-state question. When you’re a provider, it’s important to know the laws of your state, because the evidence supports long term use of stimulants like Phentermine, but in some states, it is still only approved for short term use. And by short term use, I mean three months or less. There is a discrepancy by what is supported by the literature and what is still listed in FDA guidelines and how the states interpret those things. All of that is to say, we can absolutely safely use the stimulant medications long term. Guidelines support that use, but that isn’t always possible depending on where you live. That all said. It’s important to be closely monitored when you’re on any of these medications because we want to make sure that you’re safe and supported while you’re on these drugs. It’s important to monitor blood pressure and heart rate and things like that. A good example of the long-term use. Phentermine, for example, is in one of those combination pills we talked about, Qsymia, that’s approved for long term use. It really just is about the way that the medications are labeled at the federal and the state level. My feeling about this is that the current labeling guidelines are not necessarily up to date with the current science of weight loss. My hope is that the labeling catches up to that. But that is where that confusion point comes from. I use these medicines long term in my practice, provided that, folks meet criteria to do that safely, but that will vary significantly state to state, depending on what those state laws are.
RK: That’s really good to know thanks for going over that. We didn’t have the chance to really go into the side effects of some of these newer medications like the GLP 1s. I think that the GI side effects and also the cost tend to be limiting factors on an individual basis something also to keep in mind.
Lastly, I think we probably don’t need to go into great detail about surgery, but I wonder if you could briefly talk about whom you might consider for surgery if the lifestyle changes, and the, and the medical management isn’t achieving the desired goals.
ML: Sure, the surgical guidelines have actually changed, and I can highlight that evolution and who is eligible for bariatric surgery it used to be that folks would need to have a BMI of 40 kg/m2 or greater or 35 kg/m2 or greater plus a weight related disorder like diabetes like hypertension.
The new guidelines say that bariatric surgery should be considered for those with a BMI of 30 to 35 kg/m2 class one obesity and in folks who have that BMI, but have not achieved significant or durable weight loss or a comorbidity improvement with non-surgical methods like lifestyle management or pharmacotherapy medications. And then for everyone who has a BMI of 35 kg/m2 or greater with or without a weight associated comorbidity, they would also be eligible there is basically this shift downward by five BMI points.
It’s important to note that while these guidelines have recently been updated, and I think that it’s great to be able to offer surgery to folks who would benefit from it, not all insurance companies have quite adopted this new guideline statement. For that reason, not all surgeons are offering bariatric surgery at those lower BMI thresholds. But in time, that will be the new standard. Right now, we typically will talk about surgery with those old cutoffs, 40 or above, or 35 and above with a weight associated comorbidity. If someone has really difficult to manage diabetes, for example, and their BMI is 32 kg/m2, and their insurance will cover a bariatric procedure, we absolutely will talk about that. Because we’re in this transition space of guidelines, it really does require talking to each individual person and saying, ” what are your health goals? Is this something that you really want to consider at a lower BMI threshold? Is insurance going to cover it? Is it affordable for you?” it’s important to make sure that we address that. All of those things Surgery is a wonderful tool, with the sleeve gastrectomy, which is, one of the more common procedures you can expect to lose 20 to 25 percent of body weight with the gastric bypass or the Roux-en-Y, so to speak 30 to 40%. With diabetes, if we’re talking about that specific example, we can get remission. of diabetes with surgery, 29 percent of those who have a bypass and 23 percent of those who have a sleeve. All that is to say they’re very effective. When we’re looking at how surgery intersects with the evolving landscape of medications, it is actually very exciting because some of the new drugs that we’re using for diabetes and for weight loss are approaching how effective surgery is.
I think that that is going to continue to happen. That we have medicines that are valuable in a similar way to bariatric surgery somebody would qualify by newer guidelines, but their insurance won’t cover it, then, they’re an incredible candidate for some of the, the stronger anti-obesity like some of the newer generation injection drugs that we were talking about.
RK: I agree. It’ll be interesting to see in the years to come how some of our medications may approach the outcomes that we see with surgery and remission, like you mentioned for diabetes. It’s something that we may not have talked about a few decades ago, and to think that surgery or even some of the medications that we have now could lead to remission of diabetes, not having diabetes at all anymore is pretty amazing, in some people that that could be seen. Of course, with any surgery, there are potential procedural complications that we need to be aware about, but in general, in the hands of an expert it can be done safely particularly in, in huge surgery centers. Absolutely.
As we round out our conversation today and thank you so much for taking the time to talk with us about this important topic, I was wondering what you would say to a person who’s listening today who might be struggling with their weight loss goals and really feeling discouraged in terms of what they’ve been able to accomplish.
How do you counsel your patients who are beginning or are struggling with their weight loss journey in terms of what they can attain and what is feasible in the short and long term.
ML: The first thing that I’ll say is that this is hard. We’ve been talking a lot about this complex conversation with metabolism hormones. It can get really deep when we talk about what causes weight management challenges and, makes them more difficult to kind of manage over time. It’s really important to understand the complexity of all of this and how much it sometimes feels like folks who are struggling are at odds with their hormones.
They’re sort of fighting it. against them in a way, ” Hey, my body’s not really doing what I wanted to do. What’s going on?” This is a really complex disorder. It is absolutely manageable with a healthcare partner who, can really kind of help you navigate what has been the key contributor to weight gain, and then we can understand how to provide support going forward. It is difficult. This is a lifelong journey for so many folks who are not alone. For those reasons, it’s important to seek out expert care so that we can understand, is there another medical condition that’s contributing? Is there a medication that you’re taking that’s making this a little bit harder? Are there lifestyle habits that we can give support around? Are there other medical conditions that we can help manage? Just think through your lifelong journey and know that you’re not alone in this. There are absolutely folks who it is our job. It is our pleasure to help. That is what we are here to do. And there are so many ways that we can help with weight management and help with long-term sustainable weight loss for the providers out there, I think it’s important to really listen to folks, listen to the lifestyle journey. I learned so much from my patients just sort of asking, can you walk me through your journey. That can tell me so much. Then once I understand your journey, that’s when I can understand, how do I begin to provide support? How do we begin to help make weight management a little bit more approachable and how can I give you support long-term and give you back your quality of life? Seeking health care support from an expert I think is truly important just because it’s really complex as we’ve been talking through. We as providers are here to offer compassion and supportive guidance, never judgment. That is a key takeaway for my practice.
RK: Well, thank you so much, Dr. Laudenslager, for being here today, for sharing your expert perspectives on weight management and obesity, specifically in diabetes and the non-judgmental compassionate care that’s so important for long term success and the different options that individuals have in terms of managing and approaching challenges with weight management. Thank you again for being here today.
ML: It’s been such a pleasure. Thank you for having me.
RK: I’m Dr. Rita Kalyani, and you’ve been listening to Diabetes Deconstructed. We developed this podcast as a companion to our Patient Guide to Diabetes website. Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.
For more information, visit hopkinsdiabetesinfo.org. We love to hear from our listeners. The email address is [email protected]. Thanks for listening. Be well and see you next time.
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