Living with an Autoimmune Disease (Hashimoto’s)

Living with an Autoimmune Disease (Hashimoto’s) | Sycamore

This past January, I went in for a routine yearly exam and walked out with an autoimmune disease.

Not really, but that’s what it felt like. I didn’t really think there was anything wrong with me when I went in. I’ve always been a really healthy person — I rarely get sick. But as I chatted with my midwife during the visit, I mentioned how I was still tired all the time despite making an effort to get 7-8 hours of sleep each night. I didn’t feel back to my old self even though my baby was almost two years old. It was also a lot harder to lose the baby weight this time around, even though I was trying twice as hard. I was forgetful, and more… But I figured these could all be attributed to the fact that I’m getting older, I have two young children and two businesses. “I’d like to run a little blood work just to see…” she told me.

Now, I’d heard people say that auto-immune diseases are “the new ADD”. So many more people are getting diagnosed with them, and it’s a bit controversial. Is there really a huge epidemic of these kinds of illnesses? Or is it just a new fad? People who believe that the epidemic is real blame a lot of it to the way food started changing in the 1950’s. Pesticides, GMO’s, fast food, processed food, etc… It’s true that our diets changed drastically at this point in history, and personally, it does make sense to me that it would start affecting our health in unforeseen ways. But I don’t claim to be a scientist, a dietician, or any kind of expert. I can only share what my experience is…

WHAT IS HASHIMOTO’S?

A few days later, my midwife called back with the results. I was driving, so I couldn’t write anything down, and as I listened to everything she was telling me, it felt like my mind couldn’t think fast enough or clearly enough to take it all in. I had to call back later to get all the facts straight.

She told me I have an autoimmune disease called Hashimoto’s. Having an autoimmune disease in general means that your immune system gets confused and starts attacking a part of your own body. (I didn’t know this before my diagnosis.) In the case of Hashimoto’s, it attacks your thyroid, which regulates energy, body temperature, and metabolism and is interwoven with many other areas and functions of the mind and body. Although my thyroid hormone levels tested in the very low levels of “normal”, I tested positive for antibodies, which indicate that my immune system is in fact attacking my thyroid. She prescribed Westhroid, a natural thyroid hormone supplement, and a lifelong gluten-free diet. I started right away.

But it was overwhelming. Not only did I miss bread, but my whole world view shifted! I went from someone who felt almost invincible to someone who had a serious health issue to deal with. As I read more about it, I found out that people with autoimmune diseases are much more likely to develop other autoimmune diseases. They are also at higher risk for heart disease and cancer. That scared me and I decided to do everything I could to get healthy and stay healthy.

I picked up a copy of Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause and began to read. As I started to read about the many symptoms, signs, and circumstances of Hashimoto’s, it all made so much sense. Yes, I have “foggy brain”! Yes, I have trouble sleeping at night even though I’m exhausted! Yes, it seems like the disease came on after childbirth and in the very stressful year that followed! As I read more and more, I realized that in addition to Hashimoto’s, I also have adrenal fatigue (very common in people with Hashimoto’s) and that I’ve probably been slightly hypothyroid since my teens. (Hypothyroidism is often underdiagnosed as it doesn’t always show up in routine blood exams.) And although it had been really overwhelming when I was first diagnosed, the more I read and learned about Hashimoto’s, the more relief I felt. It felt like a relief to know that my extreme exhaustion wasn’t normal, my great difficulties losing weight despite great efforts wasn’t normal, my forgetfulness wasn’t normal, etc… And it especially felt like a relief to know that there were things I could do about it.

HOW I’M DEALING WITH IT

I found out that there are many things you can try to alleviate Hashimoto’s. Unfortunately, there isn’t one cure-all. It’s a subtle and little understood disease, and from what I’ve read and heard, different things seem to work for different people. It ends up being a trial and error kind of process for most. Here’s what I’ve been doing:

  • Taking Westhroid. (A natural thyroid hormone supplement. This is more of a “band-aid”. It helps make up for the hormones that my thyroid isn’t putting out enough of, due to the fact that it’s under attack. It doesn’t address the root issue of why my autoimmune system is attacking my thyroid, though. The following lifestyle changes are supposed to help address the root cause.)
  • Eating a gluten-free diet. Not only that, but I’m eating fewer grains in general and easing my way towards a paleo diet, which is supposed to be great for people with autoimmune disease. I do feel healthier eating this way, and it’s been great for my family, too. In fact, back in January, my daughter Ingrid had gotten to the point of having stomach aches almost every day, and we didn’t know why. I decided to try having her go gluten free at the same time as me, and the stomach aches went away within a few days. She’s only had a couple since January, and both times we realized that we’d accidentally given her something with gluten.
  • Sleeping more. I still have trouble falling asleep and staying asleep sometimes, but overall, I am doing much better about getting to bed at a decent hour. I’ve found that I need 8-9 hours to feel okay. Given the chance, I could easily sleep for 10+ hours. This hopefully won’t be forever, but until I get my health more under control.
  • Getting more rest in general. I’ve had to shift my way of thinking. For so long, I’ve worn my hours at work and lack of sleep as a badge of honor. But I don’t think that way anymore. I know I work better and more productively if I not only get enough sleep, but I get enough downtime and unplugged time. I spend Friday through Sunday with my family and don’t answer or even read emails during those days. I also make sure I have time every evening to wind down before bed, whether it’s through watching a show, reading a book, or both.
  • Avoiding Stress. I know, this is a really tough one. Of course I still have stress, but I’ve made an effort to identify the biggest triggers for stress in my life and avoid them whenever possible.
  • Exercising. I used to be good about exercising 5 days a week or so, until my second baby (Lars) was born. By this past January, when he was almost 2 years old, I still hadn’t started exercising again because I just didn’t have the energy. I kept thinking that as soon as I could get caught up and feel rested again, I would start exercising. Finally, I just forced myself to start walking again, despite my fatigue.
  • Testing for food intolerances. Eating foods that your body is allergic to or intolerant of can increase autoimmune symptoms, and cause other issues as well. I got the igG test, which tests for 96 different food intolerances / mild allergies (not anaphylactic allergies). It turns out that I am highly intolerant of eggs and moderately intolerant of whey. I had absolutely NO idea before, but I could feel a marked difference the moment I gave these up. (I ate a lot of eggs before.)
  • Vitamin D. At the same time I found out I had Hashimoto’s, I also found out I was severely low in vitamin D. (This is pretty common.) I began taking a liquid supplement, and will continue to do so indefinitely.
  • Probiotics. These are supposed to be hugely beneficial in restoring the good kind of bacteria to your gut. (And many people believe that all auto-immunity begins with problems in your gut.) I eat plain greek yogurt sometimes, although I’ve been trying to do less dairy overall (paleo), so I also take supplements sometimes, drink kombucha, or eat lacto-fermented vegetables.

After a few months of implementing all of this, I felt like I had more energy, was a little less forgetful, and I shed about 5 pounds. Overall, I feel much better than I did before. Not 100% — I still feel like I have a ways to go. But it’s a good start.

Next, I plan on getting my levels tested again to see what that tells me, and then implementing some additional healthy lifestyle changes.

In a way, I feel like my diagnosis was one of the best things that could have happened to me. It’s made me re-evaluate how I was living my life and take serious steps to improving my overall health. All of this has spilled over into my family life, making them healthier as well. The trick now is not only sticking with it, but upping my game so I can feel even better.

RESOURCES

If you’ve recently been diagnosed with Hashimoto’s, or are just looking to improve your health in general, here are some books and resources I’ve found to be helpful:

I’d love to hear your tips and resources, too!

Photo: Jessica Peterson

You might also like Vieques with KidsMy Secret to Work / Life Balance, & How to Survive the Third Trimester.

21 Comments

Leave a Comment to veronika

  1. Taylor says:

    I think you would find the book It Starts with Food really helpful! While I do not have an autoimmune disease, I experience a lot of the same “foggy brain,” stomach trouble and lack of energy that you described. Reading that book and following the Whole30 plan that it discusses COMPLETELY eliminated all of those issues for me! While it’s definitely hard to be on-point with diet and exercise all the time, I find that when I follow the “rules” I always feel like a new person! Hope it helps you!

    • Eva says:

      I was just looking at that book online last night! Wow, guess it means I better read it and do the Whole30. I’ve been wanting to for awhile, actually. :) Glad it’s working so well for you!

  2. Nhung Le says:

    Hi Eva,
    I’ve never met you but through your work, your blog and you classes (I took both of your online Atly classes), you have shown me that you are incredibly inspirational, generous and brave. I don’t have any tips or know any helpful resources but you have my best wishes! And thank you for sharing all the books and resources – nothing is more important than our healthy :)
    Nhung

  3. Amanda says:

    Eva you’ve hit the nail on the head, and like you, I feel as though the Hashimotos diagnosis I received in April has been a gamechanger for me after three years of struggling with unexplained infertility. I am full of hope that through treatment of the Hashimotos and the many ‘levels’ my thyroid has thrown out of whack as a result, (and a general lifestyle overhaul!) will see us with a family of our own soon, and a better ‘Me’. I’m loving my gluten free, paleo life, and loved reading that you too are adjusting to less stress, more downtime and sleep! It’s lovely to read that so many are experiencing the same things, and to know we’re not alone – but also to find that others are seeing and understanding the positive changes needed for happier lives and that of our families too! Thank you for sharing :) xx

    • Eva says:

      Hi Amanda, Thanks so much for your thoughtful response. It does help to hear of other’s journey’s with issues like this. I’m glad you are well on your way to healing and building a family of your own. xoxo

  4. jennifer says:

    wow, Eva, I’m sorry to hear you’re dealing with this. Sounds like you’re already hot on the trail of figuring out the best ways to be well. Wishing you and your family the very best.

  5. Danielle says:

    My mom and sister both have Hashimotos’s. You might want to read up on/get tested for MTHFR. It’s a gene mutation that some people feel is the root cause of many autoimmune diseases. It’s complicated , but it affects the way you metabolism b vitamins and is actually fairly common. Anyway, best of luck! It sounds like you are on such a good path to feeling better and doing so many great things for yourself!

    • Eva says:

      Hi Danielle, Thank you so much for the comment and the recommendation! I haven’t heard of that test — still so much to learn — but it sounds I should get it. Thanks again!

  6. Kendra Smoot says:

    Eva, you are such a dream. All of this information is so helpful and I have a feeling I’ll be referencing this post and your resources for many years to come. It’s also pretty incredible that you’ve been able to accomplish so much- running a stellar business, starting a new creative venture, being a present and admirable mom and wife, and a genuine and generous friend while struggling with the exhaustion that comes with hashimotos. I feel like I’m just starting my journey into thyroid-land…all three of my sisters have pretty intense thyroid issues and I’m starting to deal with some of my own. One thing I’ve also heard is that raw cruciferous veggies like kale and broccoli can be hard to digest when you have a hypo-thyroid condition. Not sure if you’ve read anything about that. Big hug to you! Xxoo

    • Eva says:

      Hi Kendra, Thank you so much. I feel the same way about you and am so in awe of all your talent and kindness. I didn’t know that your sisters have thyroid issues and that you are starting to yourself. No fun, but at least there are things we can do about it, right? I have heard that about cruciferous veg, but haven’t really noticed it for myself. I should definitely put it to the test, though. Go off of them and then re-introduce them to see if it makes a difference. I naturally prefer those types of veg to be cooked and I wonder if that is a sign that I’m having trouble digesting them? Hmmm… so many things to think about and try out. Big hugs to you, too! xo

  7. Jillian says:

    Thanks for this post! I learned a lot:)

  8. Camilla says:

    I see that your post is from back in june. But I only just saw it now today via a link that popped up in my pinterest feed. It seems like the universe sends/shows you things just at the moment you need them. I have watched a few videos online about this and was beginning to wonder if this was a problem for me. What you describe in your blogpost is “me”! I think I need to do some more research about this, because feeling like this is no way to go through life. Changes need to be made, at least for a long period of time to see if that will make a difference in how I feel on a daily basis.
    Thankyou :)

    • Eva says:

      Hi Camilla,

      I’m so glad you stumbled across this post! I wish you the best with everything and hope you get to the bottom of why you’re not feeling great.

  9. veronika says:

    Hi, I also have autoimmune disease (different one), and changing diet has helped me tremendously. I had various health issues and unfortunately standard medicine wasn’t that helpful. I took natural/alternative route about year ago, and along with herbs, I changed diet, got rid of cows milk and 90% wheat and things got much better. Paleo diet is the way:), I don’t want to be super strict about it, I don’t want to feel all the time restricted, but slowly shifting to different meals, food, starting to learn to cook differently etc. Stress and sleep is also major factor when it comes to autoimmune problems. For me the key is to think about it not as burden, but that my life needed change, and simply I have to and want to live differently:) Good luck with your journey!

    • Eva says:

      Thank you that’s great insight! I’ve changed my diet quite a bit, too, and trying my best to get sleep and avoid stress. So many things involved! But yes, it’s a journey. Best of luck with yours, too!

  10. veronika says:

    sorry I should have just said – Enjoy your journey! cook – books you might enjoy – Eat, Nourish, Glow by Amelia Freer, My New Roots by Sarah Britton, Wheat Belly by dr. Williams Davis, Delicious Ella, Gut – Giulia Enders.

  11. Jill says:

    Hi Eva
    I feel like my story begins much the same… I went to the doctors 5 months ago for a urinary tract infection and walked out with an autoimmune disease…. I’m normally a healthy person but I realise now I’d been ignoring symptoms like severe fatigue for far too long. I just thought I was burning the candles at both ends and so that how life was! But while I’m relieved in a way to know the reason for the cause, I’m still struggling to get my medication right which has been reeking havoc with both my head and body. The worst part is no one really knows my struggle as I keep it to myself, as I’ve always been the one who is always smiling, the sunny and bright person who is the go-to for everyone’s problems, so I feel like I’m not able to have my own. I know I’ll be fine, I’ll get these levels right, make balance in my life eventually and then maybe I can stop hiding in bathroom to cry. But in the meantime its good to read stories like yours to know I’m not alone!

    • Eva says:

      Jill — I’m so sorry you are having to go through this, but I know you’ll get it figured out in the end. Glad that hearing my story might help a little bit in feeling some solidarity in this. You can do this. You’re not alone.

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