Hashimoto's Disease Sounds Bad-Ass. It's Not. Part Two. - MarceyRader.com

Hashimoto’s Disease Sounds Bad-Ass. It’s Not. Part Two.

By July 11, 2014Health
Marcey and Kevin

Part Two of my Hashimoto’s 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.

 

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 key 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 endo, because she understands that my adrenal glands play a huge part in my health and progression of Hashimoto’s. She understands 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 longer 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 on 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.

 

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 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.

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I had to go from being a mostly vegetarian, except for the occasional fish, to now eating meat because being a gluten-free, soy-free and mostly dairy-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 meat 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 very common 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, at which I am at risk for as well 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 brainspace 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.

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About Marcey Rader

Health and Productivity solutions for high achievers. Work Well. Play More!®

16 Comments

  • Angel Fidler says:

    Marcey, If I say I do understand completely. I really do. You have just told most of my story literally, I have a few different twists. This tells the story to a T. I have been a a slow ramp up that ebbs and flows with highs and lows. Thank you for sharing maybe sometime we can communicate privately. Please feel free to contact me if you wish.

  • Marcey Rader says:

    Hi Angel, Thank you for reading my post. Sometimes when I read comments like this I immediately get this choked up feeling like I want to cry. It took me two hours to write this and normally I can knock out a post soup to nuts in 25 minutes or less. I kept rewriting thinking it would be too long and boring for people. It was a ‘coming out’ for sure.

  • […] Interested in how I’m dealing with it? Here’s Part Two. […]

  • You can definitely see your skills within the article you write.

    The world hopes for even more passionate writers such as you who aren’t afraid to mention how they believe.
    Always follow your heart.

  • Helpful info. Lucky me I discovered your site by accident, and I am stunned why this
    coincidence did not happened earlier! I bookmarked it.

  • You actually make it seem really easy with your presentation however I
    find this matter to be actually one thing that I believe I’d
    by no means understand. It kind of feels
    too complex and very extensive for me. I’m looking forward in your subsequent submit, I will attempt to
    get the hold of it!

  • K says:

    Thanks for your great story! Are you handling Hashimoto’s without medication, or are you doing all these things you write about in addition to a daily pill for life?

    • Marcey Rader says:

      I wish I could handle it without medication but unfortunately I am on Armour for life. I believe that the lifestyle changes I am making and continue to make will allow postponement of the destruction of my thyroid as well as not have to increase my dose. Living this lifestyle certainly helps with my symptoms. I’m so happy you appreciated the story.

  • K says:

    I’m sorry I lost track of your site somehow, but thank you so much for your quick reply! I’ve been investigating the different ways that people are handling Hashimoto’s with and without medication. Sounds like you’re doing a lot of great stuff, and I wish you well!

  • Jennifer says:

    Thank you! Your story & honesty is reassuring! I will be 39 this year, I’m a mother of 2, & a wife…I have my BS in Exercise Science & MA in PE. Over the past few years I got into running 1/2 marathons & a 30k, but now I barely run 4 miles a few times a week. I’m tired of people telling me how healthy I am, and I can fight this….because everyday is a struggle! I Was literally just diagnosed last week after years & years of symptoms, and I even left my endo with,”see you in 3 months & a photocopy describing Hashimotos. Now I’m left researching everything & feeling completely overwhelmed. No one seems to understand, they think it’s a fad diet, and all I want is to feel normal for myself and my family!

    • Marcey Rader says:

      Every time I read a comment like this it makes me sad. No one ever seems to be diagnosed quickly. Why should it take years of poor sleep, poor digestion, fog brain and everything else when it takes one simple blood test?
      Be careful with your research, as there is a lot on the internet that isn’t true, and even this article has been revised after talking to a few doctors who specialize in this area.
      After a few months, I decided it didn’t matter what people thought about my diet.If it helps me feel better and live longer, than that’s what I’m going to do. It also makes me very empathetic to other people’s meal plans, fad or no. One person’s poison is another person’s potion. Best of luck to you in your health journey Jennifer.

  • Crystal says:

    Just stumbled across your post. This is me. I too adventure race (and triathlon, and cyclocross). I raced a 24 hour in Moab this past fall. After the race my energy plummeted. It was deteriorating after every race this past year. I finally visited the Dr 3 weeks post Moab race and discovered I had Hashimoto’s. I had no idea. It seems excess hair loss, weight gain, heart palpitations, and an enlarged thyroid was an obvious indication to my dr. I thought I was just getting old. I was left with out a lick of information on the disease from my dr other than a diagnosis and told, my thyroid is still working fine but I need to take iron and vitamin D3. That was it. I must be early on in the disease as my TSH was just over 2. I gave up gluten the day after diagnosis. I’ve read multitudes of research papers. I added some more supplements. I don’t know how this disease will progress, but I’m not on a thyroid med at this time. I feel much better than I did the previous year. Your blog made me happy to hear I’m not the only “healthy” person out there going through this.

    • Marcey Rader says:

      Hi Crystal,
      I’m so sorry about your diagnosis, but am really glad that you stumbled across my post and it made you feel at ease. It might take awhile, but I am completely okay with it now and really do see it as a gift. It’s so often overlooked by doctors and so often not treated with the seriousness that it should be. I was told over an email and I didn’t even know what it was. I didn’t know that you could have Hashimoto’s Disease and not be on thyroid medication. Since you are an athlete, I suggest downloading the Sweetwater HRV app and monitoring your stress levels daily. This was a game-changer for me.

  • Kathy says:

    I’m SO glad you wrote this and that I happened to come across it! I’ve just been diagnosed with Hashimoto’s and can relate to a lot of what you’ve written… I went through menopause at 44 (I’m 49 now). No one seems to want to even listen to me when I say I feel like there’s a link there. I’m a yoga teacher and I feel like this disease has stolen my identity – I pride myself on my healthy, active lifestyle. Although it’s been a while coming, the diagnosis for me is just a week old and I’m struggling to come to terms with what all this means but reading your post is inspiring me to pick myself up, dust myself off and get on with a way forward!

    • Marcey Rader says:

      Kathy,
      That makes my heart sing and my smile bigger to read this. Hashimoto’s has not stolen your identity. It may not feel like that now, but I decided to befriend it, love it and accept it into my life, treating it like I would treat any friend….with kindness and patience. You can continue to be a role model to your students. Remember, there is a grieving process. You are grieving a part of yourself that you have lost and it takes time to accept the part of yourself that has moved in and taken residence. Give yourself that time to heal.

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