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Welcome to The Autoimmune Wellness Podcast Season 2! We’ve created this podcast as a free resource to accompany our book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness.

Season 2 Episode 8 is our final episode of the season! And what an episode to end on. We don’t often hear stories from men in the Hashimoto’s community but today, Angie is interviewing our friend Ryan Monahan who has managed his Hashi’s symptoms in one of the most challenging professional environments: a tour bus.

As a traveling musician, Ryan had to become an expert at thinking ahead and being proactive about his healing. No matter your career, you will definitely find takeaways here. Scroll down for the full episode transcript!

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Mickey Trescott: Welcome to the Autoimmune Wellness podcast, a complimentary resource for those on the road to recovery. I’m Mickey Trescott, a nutritional therapy practitioner living well with autoimmune disease in Oregon. I’ve got both Hashimoto’s and celiac disease.

Angie Alt: And I’m Angie Alt, a certified health coach and nutritional therapy consultant, also living well with autoimmune disease in Maryland. I have endometriosis, lichen sclerosis, and celiac disease. After recovering our health by combining the best of conventional medicine with effective and natural dietary and lifestyle interventions, Mickey and I started blogging at www.Autimmune-Paleo.com, where our collective mission is seeking wellness and building community.

Mickey Trescott: This podcast is sponsored by The Autoimmune Wellness Handbook; our co-authored guide to living well with chronic illness. We saw the need for a comprehensive resource that goes beyond nutrition to connect savvy patients just like you to the resources they need to achieve vibrant health. Through the use of self assessments, checklists, handy guides and templates, you get to experience the joy of discovery; finding out which areas to prioritize on your healing journey. Pick up a copy wherever books are sold.

Angie Alt: A quick disclaimer: The content in this podcast is intended as general information only, and is not to be substituted for medical advice, diagnosis, or treatment. On to the podcast!

Topics:

Angie Alt: Hi everyone! Welcome back to the Autoimmune Wellness podcast, season 2. This is Angie, and today I’m interviewing Ryan. He is a Hashi’s warrior, and also a functional diagnostic nutrition practitioner. And additionally, with all of that going on, he’s also a passionate musician who has been in the music industry for 15 years, and member of a regular touring band, Easter Island. We are going to dig into that, you guys; touring and AIP. It can be done.

We’ve gotten a lot of feedback that you guys find it helpful to hear from folks who have taken on the healing journey in real life. So today we will be sharing a little bit of Ryan’s story. Thank you, Ryan, for joining us from Georgia. Are you ready to get started?

Ryan: Absolutely. Thank you so much for having me on the show. I can’t tell you how much I appreciate it.

Angie Alt: Yeah. We’re really excited to share a lot of different stories this season. So let’s just dive in with some questions. You know, one of the areas we love to explore with people is diagnosis, and folks’ diagnosis story. Because as you probably know, in the autoimmune community, that can be kind of a harrowing journey. What was the first symptom you noticed of your autoimmune disease?

Ryan: Yeah. So I had really struggled with allergies and asthma my entire life. And just generally symptoms of related to ear, nose, and throat. I was one of those just kind of sick all the time kids. Like, oh he’s on antibiotics; oh, he’s had bronchitis, the croup. You name it. Strep throat, just constantly. And that kind of persisted into my adult life. And then it started getting worse when I was in college. And it was really when I noticed that things were getting really bad was when I was sleeping for 10, 12 hours at a time, and was having trouble waking. So I would set three alarms, and that still wouldn’t wake me up. And I would set an alarm on my stereo system, and it would be shaking the entire room.

Angie Alt: Oh boy! {laughs}

Ryan: Yeah, and I would still just sleep through it and miss classes. It took me a few years to really piece it together. Because at that time, I had just assumed I’m burning the candle at both ends, I’m a busy guy, I’m just exhausted. I’m just kind of burnt out. And you know, that was kind of the narrative I told myself for a while.

Angie Alt: Ok. So it was probably since childhood that you were kind of dealing with some of this stuff, and it sounds like it kind of came into full being in probably your early 20s, in college. I think that happens to a lot of us, actually, in this autoimmune world. And it can be hard to separate it, right? From, is this just regular, like you said, burning the candle at both ends, or not?

Ryan: Absolutely. I think as a society, we’re just kind of accustomed to accepting a really low baseline for health. And when everybody is more or less sick around us, I don’t think. It’s kind of like that quote, “The last thing a fish would ever notice is water.”

Angie Alt: Right.

Ryan: And so I think, yeah, we just kind of assume that because symptoms are common that they’re normal. And we just try to cope with it, and maybe try things here and there. I’ll try some vitamin C, and kind of self-medicate a little bit. But as you know, that only lasts for so long until your symptoms are sort of screaming at you for help.

Angie Alt: Right. So how long did it take you, then, to actually get an official diagnosis from that point when you were kind of like; “Oh, this is not normal. I can’t even get up to my stereo system screaming at me. What’s going on here?”

Ryan: Well. You know, it’s really hard to say. Because I had been dealing with these things most of my life. It was just really in college that they kind of reached a peak. But I would say it’s at least 10 years. I wasn’t diagnosed with Hashimoto’s until I was 28. And this is kind of insane, but I actually had visited over 40 doctors before I received a diagnosis.

Angie Alt: I actually don’t think that’s insane. I totally hear you brother! {laughs} I’ve been there too.

Ryan: Yeah.

Angie Alt: But yeah, it feels insane in comparison to a lot of other people. But you’re just searching and searching. Do you think that in part being a male was a barrier to getting a Hashi’s diagnosis, because it’s so commonly women?

Ryan: Absolutely. I think doctors just didn’t think to check with the sort of constellation of symptoms that I was experiencing. Although, those are more commonly associated with women, I think I got overlooked by the traditional medical system. And no one had ever thought to look for those kinds of markers for the thyroid. Because it’s, what, 8 times, is that correct? About 8 times more likely in women than in men?

Angie Alt: Boy, I don’t know the exact percentages. But yes, it’s much, much more common in women. But it does happen. I know of a lot of other men actually out there in our community, too, dealing with Hashi’s. It’s too bad that it’s not on more doctor’s radars.

Ryan: it also makes me wonder how many men are just not seeking the kind of medical help or advice. I suspect that maybe they wouldn’t be as inclined to visit the doctor if they were experiencing the same symptoms that a woman would be.

Angie Alt: Right. Yeah.

Ryan: So there might be; in other words, there might be a little bit of male pride kind of issue going on there.

Angie Alt: Yeah, maybe some male pride. And then the combination of the doctor’s kind of overlooking it. And it makes it tough for somebody like you to get a diagnosis. When you got the diagnosis, how did you handle it?

Ryan: When I got the diagnosis, I was sort of a combination of scared and confused. And also really thrilled.

Angie Alt: Yeah.

Ryan: Like, this weight had been lifted off of my shoulders. Like, I didn’t even really know what the thyroid was or what it’s function was. But I was also just really extremely excited to have a diagnosis, and to know that I wasn’t crazy and that this wasn’t all in my head. I now had something concrete to work on.

Angie Alt: Mm-hmm. Yeah, I totally relate to that feeling. For me, I kind of relate it; it was sort of like naming my enemy. And now I could actually fight effectively. Before that, I had no idea. It was kind of like being in the dark and sort of hoping that I could figure it out. So I really relate to that. How did your friends and family handle your diagnosis?

Ryan: Well, I think everyone was just relieved to see me get better. I remember a good friend of mine seeing me only a week after I had been on Synthroid. And he said, “What did you do with Ryan?”

Angie Alt: {laughs}

Ryan: Because I just had this pep in my step all of a sudden. And my face physically looked different. I lost this sort of puffiness in my face. And my voice changed. It was kind of freaky. So people kind of looked at me funny at first. But I think everyone was relieved. Everyone kind of knew something was up, but nobody really knew what it was.

Angie Alt: Mm-hmm. Yeah. I can totally understand that. Do you think that; this is a pretty common experience, but not everyone shares it in the community. Do you think that some of your friends and family kind of doubted that there was something really there? Did you ever feel like you were kind of desperately trying to make people believe that something really was wrong?

Ryan: Yeah, 100%. And I won’t name names.

Angie Alt: Yeah, I get it. {laughs}

Ryan: But I think a lot of my friends and family thought I was a little bit of a hypochondriac, that it was in my head. Or some of the things that I had expressed to them that I was going through, I think they maybe overlooked, or had just kind of passed off as, oh that’s normal. You’re getting older. And it’s like, but wait a minute! I’m in my early or mid-20s. I shouldn’t be sleeping 12 hours a day, I shouldn’t be this depressed. I shouldn’t be this fatigued all the time. So it was really hard for that reason. I feel like I had to sort of internalize it. And kind of internalize the suffering, to an extent. In the sort of darkest hour, I remember feeling like I thought I was dying, and had no idea what was going on. And then I would beat myself up. Like, “Oh, you’re being so dramatic. You’re not dying.” And you know, I maybe wasn’t that far from it. Because when I was diagnosed with Hashimoto’s, my TSH was above 150.

Angie Alt: Wow.

Ryan: And for those of you who don’t know, optimal thyroid range is maybe between 0.5 and 1.5. So my TSH was actually above the detectible lab limit. So it was somewhere above 150; the lab couldn’t even detect it that high.

Angie Alt: Wow.

Ryan: But I remember my doctor saying, “I don’t even know how you were able to get up in the morning,” for years, potentially, that I was dealing with this without having any diagnosis.

Angie Alt: Right. So you’re at the extreme end of experiencing, to that point, this undiagnosed autoimmune disease. And you’re unable to find answers. You’re seeing upwards of 40 doctors at this point trying to get those answers. And the people around you are beginning to doubt the validity of the problem. And yeah, you’re right. Of course you’re going to internalize all that. So then getting a diagnosis, in some ways, I think sometimes, maybe outside of our autoimmune community it can sound like we’re a little kooky, being a little thrilled or relieved to be given a diagnosis of having a chronic illness. {laughs}

Ryan: Yeah.

Angie Alt: But it’s actually really validating when you’re in that terrible spot for so many years.

Ryan: Yeah. It’s incredibly validating. Because you realize that you didn’t have to beat yourself up so much over your diagnosis, you know. And I think sometimes even people get into the more psychospiritual aspect of their condition. And think, maybe it’s karma. Maybe I deserve this for some reason. I think you can get kind of deep into blaming yourself for your illness. And once you realize that it has a physiological root to it, I think that’s incredibly relieving. Because you can kind off cast aside that narrative that it’s your fault.

Angie Alt: Mm-hmm. Right. So, how long after receiving the Hashi’s diagnosis did you start to dive in and learn about autoimmune disease itself, and start to kind of understand that process? Were you somebody who really wanted to kind of gather as much knowledge as you could, or did you feel a little fearful or tentative about getting some of that information?

Ryan: It was a pretty gradual process. I would say the first 9 months I really didn’t understand much about what was going on, and I just sort of trusted the advice of my endocrinologist at the time. Which was just to take the Synthroid, there’s nothing you can do about it. And I kind of left it at that.

Then, like many people experienced, the Synthroid only had a positive effect for so long. And a lot of my symptoms started popping up again. And that’s really when I started taking things into my own hands. Because I started to question. Ok, so my thyroid is malfunctioning. I get that. I get that my immune system is attacking my thyroid. But I wanted to know why, you know? I’ve never been the type of person to just kind of lie over and accept something. And that’s when I started to really kind of try to reverse engineer what was going on, and to do my own research and become my own health advocate. And at that point, I had started to do some internet research, and I came across Izabella Wentz’ book, which for many people is the thyroid/Hashimoto’s bible.

Angie Alt: Right.

Ryan: And you know, that was the first thing I had read that had opened me up to what functional medicine is, and what it could offer. And this whole concept of looking for root causes, and looking for nutrient deficiencies, and hormone imbalances, and gut infections, and even things like metal toxicity. All these things were just not on my radar until I had discovered her book. So that was really a game-changer for me. Because it provided a road map to how to manage the condition. And in some cases, people are even able to successfully put it into remission through implementing some of these strategies.

So shortly after discovering her book, I came across Mickey’s website. Which, at the time, had her Autoimmune Paleo Cookbook, which was just an eBook at the time. So this was kind of really at the beginning stages of things.

Angie Alt: That was back in the way back. {laughs}

Ryan: Way back, yeah. And I can’t even say I remember how I found her website. But I did somehow. And I really resonated with her story, because I felt like we had a lot in common in the sense that we both had Hashimoto’s, we were both former vegans, we both had gluten intolerance, we both had an MTHFR mutation, all these different things. And just through that kind of connection, even though I hadn’t met her yet, it had really led me to want to find out more about, what’s the whole autoimmune paleo thing? That’s when I kind of dipped my toes into making dietary and lifestyle changes.

Angie Alt: Ok. So it sounds like kind of your first initial reaction was to kind of go with the conventional approach, and you gave yourself a little bit of time to, at least let the hormone...