Thyroid Autoimmune Disease: My Experience + Recommendations

Thyroid Autoimmune Disease: A Personal Growth Story

Hi, friends! Dawn here. It has been awhile since I connected with you all. Don’t get me wrong, I author all our posts (well except for those with the Guest Post tag). However, I am not often talking to you person-to-person. Because I am not about to share all my personal business with you in a recipe post. That is just, unappetizing.

Yet, I did promise an update about my health. For those who follow along on Instagram or Facebook, you know I have been alluding to a diagnosis. And you may have seen that we began sharing Autoimmune Paleo recipes. Or that my AIP board on Pinterest is now incredibly well stacked.

Today I am getting personal. Once again breaking out of my comfort zone in the hope that my story could touch even one person. I am painfully aware there are many others out there with similar issues, or those looking for a connection to help work through a struggle. Please know there are resources for you. Do not give up hope, because as hokey as it sounds, things will improve.

To catch up on my past health updates, see my very first personal wellness update, the follow-up how I took control of my health, and lessons in self-care.

Note: this post was originally written in the spring of 2018. Read on for a detailed breakdown of the elimination diets I tried since then, and how I found intuitive eating.

Thyroid Autoimmune Disease: My Experience + Recommendations

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the calm

You know how it usually goes, just when you think things are going well, they all fall apart. Murphy’s Law is painful. Up until late in 2017, I thought I was in the clear, that I had maybe even overcome my health struggles. It seemed I was doing everything right, and I was overall feeling pretty well.

 Right before the holidays I hit a wall. Life starting getting stressful, and I didn’t pay enough attention. The craze of the holiday season, family issues, an unexpected heavy workload, and pushing myself to get more done with my side business all came at me. I fell right back into former habits without even realizing it.

First, I started slacking off on my diet and avoiding self-care. Then sleep was sacrificed, which affected my hormones, mental health, and finally illness set in. Instead of slowing down, I figured I could weather this storm, as I had done so many times in the past. After all, I had the experience and I was doing well. This time though, things were different.

THE STORM

For many years now, one of my many conditions has been an under active thyroid. Hypothyroidism is incredibly common, especially for those who also suffer from PCOS. This is pretty standard stuff, affecting at least 20 million Americans. Which is why I didn’t give this condition much thought. Sure, I experienced the typical symptoms of fatigue, brain fog, cold hands and feet, dry skin, and hair loss, among others. But I was on medication to replace the missing thyroid hormones, and everything was pretty much handled. Or so I thought.

At the same time life got a little crazy as I noted previously, my symptoms shifted. I started experiencing a rapid heartbeat, feeling like my heart was beating out of my chest. I was jittery and my limbs would literally shake throughout the day. Next came sleep issues, including trouble falling asleep, waking up often, and eventually barely sleeping at all. Instead of being constantly cold, I was hot and flushed. My anxiety returned more intense than ever before.

In addition to the thyroid symptoms, my digestive issues returned with a vengeance. As inflammation flared, so did my skin, mental condition, and entire immune system. It literally felt like I was falling apart.

All of this led me back to the doctor for testing. After a whole lot of blood work, a thyroid uptake and scan, and an ultrasound, it was revealed I had thyrotoxicosis. My glad swelled to 4 times its normal size, and was literally flooding my bloodstream with dangerous levels of hormones. This was taxing the rest of my system to work overtime, so my adrenals were fatigued, I was showing signs of liver damage, and my immune system could not keep up.

And so began a new chapter in my health journey. I knew that there was a difficult road ahead, I just didn’t know what it would look like.

a disturbing diagnosis

I was immediately put on meditation to calm my thyroid and stop the production of hormones. All I could keep thinking was, what is the real problem? And how do I actually treat this thing?

It took over a month of testing to determine that the thyrotoxicosis was autoimmune related. Now an epidemic, autoimmune disease affects 50 million Americans. Plus, with my family history and immune system running on overdrive for years, this wasn’t a huge surprise. But the surprise was the type of autoimmune condition.

Hashitoxicosis is a unique, and very rare, form of autoimmune thyroid disease. Many have heard of Hashimoto’s (the most common cause of Hypothyroidism) or even Graves disease (Hyperthyroidism). But Hashitoxicosis is a unique hybrid. It means you fluctuate back and forth between and under and over active thyroid, with symptoms of both.

Honestly, it has been a struggle to even wrap my head around everything. After the shock wore off, my reaction was a feeling of personal failure and judgment. What did I do wrong? How could I have let this happen? A common response is assuming we created our own health problems. Sometimes this is the case, but many times we have to learn the truth the hard way.

TREATING A MOVING TARGET

What does this diagnosis actually mean? I am truthfully still trying to figure this part out. We know it is unpredictable and difficult to treat. But that doesn’t mean it is impossible. It will certainly take some effort, faith, and dedication.

Traditional treatment options are less than favorable, and I certainly don’t want to settle just because it is convenient. The most common recommendation is Radioactive Iodine Therapy, or complete Thyroid removal surgery. Both of which have serious side effects and long-term complications. To make things worse, the medication used to treat an over active thyroid, the very one I am currently forced to take, is proven to cause serious birth defects. This surely isn’t doing anything positive to my body either.
 
I often cycle between thyroid highs and lows on a weekly basis. I never really know what may be coming, so I have to work on tracking patterns and pinpointing symptoms. This can be exhausting many days, and takes a lot out of me. I have to listen intently to what my body is trying to tell me so I don’t miss any clues. Which means I cannot slack off on self-care, or my health suffers.

Although I am incredibly thankful to have a diagnosis, as this can take years for many of us, it doesn’t mean I am out of the woods. I now have the difficult task of both mitigating the effects of this disease and  finding its root cause. Because without identifying the cause, I can never go into remission.

Thyroid Autoimmune Disease: My Experience + Recommendations

THE TRUE MEANING OF SELF CARE

This is the single most important part of healing, and also the most difficult. I struggle with it every single day. Ultimately self-care comes down to being a little selfish, and this goes against our nature. We associate selfish with a negative connotation, but we truly need to be a little selfish sometimes.

Caring for yourself can mean saying no to others, those that you love, and want to care for. However, always ignoring yourself will only break you down. You’ll burn out, and eventually you won’t be able to care for anyone.

This illness is ongoing, and ever changing. As with any challenge in life, this process has also taught me some important lessons. It is giving me permission to learn and grow from this struggle, which is a very powerful thing. Here are few of the lessons I have learned along the way.

LESSONS LEARNED

  • I realize now that aspects of my personality were detrimental to my health. Perfectionism, poor self-image, a refusal to relax, and pushing myself until I crash are a few of my default traits. These are all detrimental to my health and need to be monitored and addressed in order for me to heal.
  • This humbling experience is a reminder that I am not in control. As difficult as this may be for a perfectionist like myself to accept, recognizing it is incredibly freeing.
  • My number one trigger is stress. I know I can never truly avoid stress, but I can improve my reaction to it. And I can do my best to minimize exposure to stressful situations. Because managing stress is one of the single most important ways to improve our health.
  • Mental and spiritual health are key players. Food is such an important piece of the puzzle, but it isn’t the only one. Finding that mind-body connection is a huge obstacle. Only focusing on my physical body left a big hole to fill. Renewing my faith, improving self confidence, being present, and having a positive attitude are paramount to my ability to care for myself.
  • Our health is an incredible gift. Our mind and body should not to be taken for granted, because they are not guaranteed. It is only when our health fails us that we begin to take notice. But shouldn’t we be caring for it all along so that it doesn’t?
  • The old adage is true, things always happen for a reason. Even if I don’t agree it, or especially want to go through it, this is my path. I have to trust that God has a bigger plan for me, even if I can’t see or understand it.

RECOMMENDATIONS

For anyone else in a similar position, dealing with a new diagnosis, or just struggling with life’s surprises, I feel you. And I know how essential support is during this time. Here are a few things that have brought me comfort and are really working for me.

NOURISH YOUR MIND

  • Mindfulness is a very powerful thing. Find a mindfulness practice that works for you.
  • I love the Calm app for daily mediation. They have a great library of guided sessions, as well as sleep aids. For fellow concerned Christians, I promise this type of meditation is focused on self-care and not other religious practice.
  • Learn and practice self-compassion. I love the Phoenix-Helix Podcast overall but especially this specific episode: “Self-Compassion with Dr. Kristin Neff.”

NOURISH YOUR BODY

Give honor to your body and all that it does for you. It has one hell of a tough job, and we don’t often pay it forward. A couple of ways you can nourish your body include:

NOURISH YOUR SOUL

  • Snuggle with your partner or have lunch with a friend. Physical connection is incredibly powerful and can actually help us heal.
  • Walk barefoot in the grass, be out in the fresh air, and get sunlight daily. Connecting with nature is one of the best things you can do for yourself.
  • Do whatever it is that fuels you. Find your passion, nurture it, and give yourself permission to practice it often.

These are all incredible resources and provide a wealth of knowledge on thyroid and general autoimmune disease as well as self-care.

Some of my favorite sites:

Some of my favorite books:

Favorite podcasts:

  • Well Fed Women – for positive body image, general health, and Paleo lifestyle tips.
  • Phoenix Helix – as I noted previously, this is a great lifestyle show with special guests in a wide range of specialities.
  • Autoimmune Wellness – from two experts in the field, this is a comprehensive guide to living and thriving.
  • Unbound Healing – for Autoimmune Paleo lifestyle advice and recommendations.

Are you dealing with a difficult health struggle? I would love to connect and support you in any way I can. Message me to chat, or share your story below!

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12 Comments

  1. Thank you for sharing your story with us and being strong to share how you have managed on your recovery. Lots of information for those who are also going through struggles with healthy as well.

  2. Thank you so much for sharing your story! It is really perfect timing – I was at the hospital all morning doing blood work and a sonogram for my own digestive issues. It is encouraging to read your take on it and to know we can support each other along the way!

    1. My pleasure Amanda! And I’m glad to provide you a bit of insight. I’m sending you prayers and well wishes to a quick diagnosis and recovery! Don’t hesitate to reach out if you want to connect further ?

    1. Hi Cynthia, and thank you so much for sharing! I’m sorry to hear you’re also struggling but am so glad you found my story useful. It’s an uphill battle many days, but finding a good support system and connecting with others is such a gift ?

  3. Thanks so much for sharing your story! I can really relate to your comments around stress. I think we really underestimate how much stress can impact our physical health. Very important message!

    1. Thanks so much, Nicole! You are right on, stress is such an important and over looked aspect of our health!

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