Part Two of my Hashimoto’s autoimmune disease confession on how I’m coping, my rock-star husband (literally and figuratively) and why Moab has to wait.
After seeing two conventional endocrinologists who prescribed medication but didn’t really care about lifestyle changes, I knew I had to find a functional medicine provider that could also prescribe me medicine and help deal with my other issues. I wanted to be looked at as a whole person, not just as separate organs. Dr. Loan Huynh is incredible and got me on the right path, with my new provider agreeing with everything she said, but she’s not able to prescribe for me, and I needed to be able to submit to insurance, so I had to go elsewhere.
In early June I went to the Duke Center for Integrative Medicine where I found the best of both worlds. A conventional doctor with extra training in Integrative Medicine, who actually believes that a gluten-free, soy-free diet matters. She understands that lifestyle changes are crucial and that I can help myself beyond just taking a pill for the rest of my life.
A pill. Every. Single. Day. Ugh.
She performed a more updated cortisol test than the conventional endocrinologist because she understands that my adrenal glands play a massive part in my health and progression of Hashimoto’s. She realizes that menopause at 36 (I’m now 39) isn’t as simple as just taking Estrogen Replacement Therapy because it depletes the body of selenium (significant for thyroid patients) and causes me to need more thyroid medication. Menopause at 36 was something I brought up to a conventional endo, and they dismissed it without any further question. However, they said I should go on an estrogen-only patch. Later, when I found my current doc and went to an integrative OB/GYN, I learned that this was absolutely not the way to go and it needed to be a combination. So confusing.
She also said the first thing I needed to address was my gut. Eighty percent of the immune system is in your gut. Leaky Gut, or Intestinal Permeability, is basically where the intestinal barrier becomes permeable and large protein molecules escape into the bloodstream. When this happens, the body has an immune response and attacks them and can play a significant role in autoimmune diseases like Hashimoto’s and Type 1 diabetes. Tell someone you have Leaky Gut, and you’ll get some crack jokes or blank stares.
I bought The Thyroid Sessions and The Thyroid Summit and spent over 50 hours watching and listening to webinars. I’ve read two books on the adrenals and four on the thyroid.
I paid for a consult with an exercise physiologist, Ben Greenfield, who coaches professional athletes and was an expert on the Thyroid Sessions. I can’t look at myself objectively and needed to know if my serious attitude to racing had to now be casual if I could even do it at all.
Ben put me in the Marcey-equivalent to hell. Because I had (past tense because they are normal now due to lifestyle changes and NOT medication!) adrenal issues, I had to quit exercising for four weeks except for light yoga 3 times a week and easy walking 20 minutes or so a day. Now I’m on a specific ramp-up program that starts out with McGuff training, then four weeks later short high-intensity interval training (HIIT), then more extended HIIT training. In October I should be able to run and bike again at a continuous aerobic pace and in February participate in the Uwharrie Trail Race. Anyone that knows me understands that I would rather be greeted every morning with thumbscrews. I have basically lost my summer. We had to change our vacation plans to celebrate my 40th birthday, which was supposed to be hiking and mountain biking in Moab, to going to San Francisco, where at that point I’ll be able to hike and exercise, but not at the level I would want to for Moab.
In the meantime, I have to take my heart rate variability (different than just heart rate) with the Sweetbeat app and a Vital Connect every morning before I get out of bed and again throughout the day. At the time this is posted, I’ll be in Phase II of the ramp-up program. I exercised more with a shattered clavicle then I can now.
The way I train myself now will be very different than the way I trained before. If you were a client more than three months ago, I would train you in a very different way. I’ve learned enough to change my mind and what is now coming out as ‘new,’ i.e., heart rate variability, has decades of research already behind it.
I’m now on a gluten-free diet…forever. If there is one thing that drives me UP THE WALL, it’s that the only autoimmune disease that ever gets noted for gluten is Celiac. It’s even hard to find a conventional dietician that understands the gluten-Hashimoto’s or Hashimoto’s-Celiac connection. I cringe every time I read a bit in a magazine that gluten only affects Celiac sufferers. There is so much research on the indigestibility of gluten, and more and more research is coming out on gluten and other autoimmune diseases, yet the news prefers to just pick up the sound bites that sound the most interesting at that second. Like I said, Hashimoto’s sounds bad ass, but it’s not, so evidently not newsworthy.
There is no such thing as ‘less-gluten’. It is like being a little bit pregnant. You are either gluten-free, or you aren’t. Going to restaurants isn’t really fun anymore. I don’t like having to tell the waiter my medical history and then wonder if they’ll remember. I don’t like knowing that there are people working at Mellow Mushroom, who say ‘fuck you’ to people who order gluten-free. I can’t trust that they aren’t keeping my food separate, or worse, topping my pizza with the remnants of the dustpan. (update 2017 – I find eating gluten-free very easy now – progress!)
I feel like a pain in the ass for my friends, but thankfully 99% of them have been completely cool with it and have gone out of their way to accommodate me (without my asking) without making it a big deal at the same time. I even had a friend who had invited me for dinner tell me to eat before I came. It hurt my feelings and made me feel like an even bigger nuisance than I already did. Thankfully, that only happened once. I prefer not to call attention to it unless I have to. My husband, with no complaint, has gone gluten-free in the house to help me and didn’t even argue that we had to cancel a weekend away and our Moab vacation. He has been AWESOME.
I went from eating mostly vegetarian, except for the occasional fish, to now eating meat because being a gluten-free, soy-free vegetarian that can only eat small amounts of beans or lentils is almost impossible. My nutrition choices were part of my identity, and I went through a period where I was actually embarrassed to say I ate meat. Ok, maybe I am still embarrassed. Now, I have to worry about hormone and antibiotic free, grass-fed beef, so my restaurant choices are still pretty limited. Thankfully, I think I cook as well as most restaurants, so it’s really when I’m out, traveling or a guest that it is difficult.
When I was first diagnosed I had a lot of people tell me “if anyone can deal with this, you can.” I know they were saying it with kindness, but it took away the pain I was in. It made me feel like I was so strong, I didn’t need anyone’s support. I heard “it’s a widespread autoimmune disease” several times like that’s supposed to lessen the severity. Diabetes is common, but it doesn’t mean you don’t take it seriously. I could get on a soapbox about this topic, but I’ll spare you the details. Also, “I’m hypothyroid too” when the person didn’t understand the difference. Hypothyroid is a condition. Hashimoto’s is a disease. Autoimmunity is different. They both suck but in different ways. Hashimoto’s is a polyendocrine autoimmune pattern, which means it’s not uncommon to later get Celiac, pernicious anemia, or late-onset Type 1 Diabetes.
When I was diagnosed, I thought my race career would be over. I thought my business career would be over. Who wants to hire a coach to help them with their health who has a disease? Then I mentioned it a couple of times in my posts because it is what it is and I can only fight it like I do everything else. Researching, consulting and changing my lifestyle. I took on a client with Hashimoto’s who also has Addison’s, and she is in early menopause. I realized during our consult that I could help her. I spent 50 hours and many doctor appointments learning what I needed to learn not just to help myself, but to help people with Hashimoto’s as well. Not everyone understands how it feels day to day, how it affects your brain space and how scary it is to know that now you are at risk for other things. I’ve also enrolled in the Institute for Integrative Nutrition and by June 2015 will be a board-certified Integrative Nutritionist. This will complete my trifecta of certifications – Fitness, Nutrition, and Productivity.
Sorry this post was so long. I needed to say it. Cheaper than therapy 🙂
The absolute best post I have seen on Hashimoto’s Disease – I am Hashimoto’s Disease
I’ll get back to talking about productivity, business travel and general health, but if you have Hashimoto’s Disease or anything else you want to talk about and get off your chest, shoot me an email with the subject line ‘I relate.’ I look forward to hearing from you. Think you might be interested in coaching? Complete an application today and see if we are a good fit for each other.
Update! I recorded a free webinar on How to Work Well and Play More with a Chronic Illness where I talk about my Top Three Ways I manage my disease. Interested in watching? Click here.