Have you recently been diagnosed with Hashimoto’s Disease and wondering where to go from here? Here is my Hashimoto’s story and the resources I suggest which have really helped me on my Hashimoto’s journey.
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Table of Contents
My Hypothyroidism & Hashimoto’s Story
Several years ago I suddenly became the sickest I’ve ever been for no apparent reason until I found that in addition to Hypothyroidism, I have the autoimmune disease Hashimoto’s Thyroiditis. I had trouble sleeping, debilitating anxiety, and painful cystic acne that was relentless, among other things. I was miserable and began searching for answers.
Though Hashimoto’s is typically present before Hypothyroidism, my story starts a bit backwards.
Hypothyroidism
At 12 years old I was diagnosed with hypothyroidism. It’s hereditary and runs in the family so we weren’t too surprised. However, I was diagnosed much earlier than anyone in my family that I know of, including my mom who wasn’t diagnosed until she was in her 30s.
For the next 16 years I was told just take a pill, get my thyroid levels checked once a year, and everything should be fine. Come to find out, Hashimoto’s actually is a precursor to Hypothyroidism, but we’ll get to that in a bit.
Fast forward 16 years later and I was a mess. I couldn’t sleep more than a few hours a night because I’d wake up at 3am with an anxiety attack out of nowhere, I was tired all day at work, always stressed, so anxious that I had to talk myself into driving into work everyday, and I had horrible cystic acne. I knew something was horribly wrong.
After a couple months of this I went to the doctor and had my thyroid levels tested again. Turns out they were over double what they usually were. We started me on a higher dose of Levothyroxine to get the levels down again. I was still so miserable though, I knew it had to be more than just my thyroid hormone levels being off.
My Introduction to Hashimoto’s
I came across a book called “You’re Not Crazy & You’re Not Alone” by Stacey Robbins while I was looking through books to check out with Kindle Unlimited. This book was my first introduction to Hashimoto’s Disease. The more I read, the more I thought “Hey! That sounds just like me!!”
I started diligently researching Hashimoto’s Disease and how one is diagnosed. I requested the TPO Antibodies test from my doctor to see if I had elevated antibodies which would indicate I did indeed have Hashimoto’s Disease. Sure enough, I do. Typical values are under 35 IU/mL and mine was at 125 IU/mL. Furthermore, the optimal reference range is under 2 IU/mL, which I was significantly above.
The more research I did, the more I realized I must have been in what I now know to be an Autoimmune Flare. Due to all the changes I recently had in life, although most were good changes, my body went into a full force attack on my thyroid and threw everything off. Some of the changes during the year leading up to my flare included getting married, moving in with my husband, him taking a job over an hour away, buying our first house near his new job, me getting a new job closer to the our first home, moving into our first home, discovering mold in the house as well as other repairs that needed to be made immediately that we weren’t expecting, and I had weaned off of the antidepressant I had been taking for over 10 years which left my body quite upset even though I did it slowly.
Though there was nothing more that my conventional doctor could do for me other than the Levothyroxine I was already on, I kept researching as I knew there had to be something I could do. I found the Autoimmune Protocol (AIP) and began it days after I was diagnosed. It was a HUGE change and I was very hesitant, quite honestly I wanted to quit two days into it, but I stuck it out and gosh I’m so glad I did. I started feeling so much better and even got pregnant with my first child within the first month!
My Most Debilitating Symptom
I had several symptoms that told me something was wrong within my body. The biggest one was a sudden onset of crippling anxiety.
Though I hadn’t struggled with anxiety in the past, suddenly I was so anxious driving into work that I had to play songs that literally said, “I just want to be ok” and “just keep breathing” every morning during my 35 minute commute.
Even still, I often would have racing thoughts and anxiety so intense it took everything in me not to turn around and go back home every morning. There was no reason for this. I loved my new coworkers, my job, and helping children. I was regarded as being a great school psychologist and I worked well with my coworkers and the parents and students I served.
In addition to the intense anxiety driving into work, anxiety made it difficult to fall asleep and stay asleep.
I used to be able to fall asleep within minutes but suddenly I found the need to research new tactics to help me. I ended up needing to turn all lights off, stop drinking any liquids or eating, and laying down by 8pm. This was to prepare my body to sleep by 9pm because my anxiety would wake me up between 2-3am and I’d be so full of anxiety I wouldn’t be able to fall back asleep. I described it to my husband as though my body and mind seemed to think I was being chased by a bear even though I was safe in bed. Nothing I did could make this feeling go away.
The severe anxiety made it’s way into my day as I noticed my heart and thoughts would race when I was preparing for meetings, which were an at least daily occurrence at my job, in addition to anxiety driving to work.
My work load was very much a rollercoaster as I’d often have a caseload of between 8 and 35 Special Education evaluations for students that I was working on at once, each with several components to them that I needed to complete, analyze, and present findings to teachers and parents. When I had fewer evaluations it was great but once I got past 15 evaluations at once, and especially near 30, I was so stressed and overwhelmed my anxiety attacks became more severe.
I stopped being a school psychologist almost 6 years ago and typing this right now I feel the anxiety rising just thinking about it – gosh I loved my job and the people I worked with but there is so much I don’t miss about it.
Being the data driven person that I am and the researcher that I am, I started to track my sleep including when I went to bed, when I woke up overnight, and when I was up for the day. I tracked this in a notebook as well as on graph paper. In the notebook I also wrote what happened that day, especially anything significant, or anything I felt may have led to the way I was feeling.
After a few months of this the data was clear, I wasn’t sleeping and I didn’t know why. The caseloads were a little higher than the schools I had worked at in the past but not by much. There really wasn’t a clear reason as to why I was having such a rough time.
Until I learned about Hashimoto’s and autoimmune flares.
Hashimoto’s Can Lead To Hypothyroidism
My story is a bit confusing in that I mentioned I was diagnosed with Hypothyroidism first and then Hashimoto’s almost 20 years later. However, Hashimoto’s would have developed in my body and started attacking my thyroid years before I developed Hypothyroidism.
It is estimated that over 95% of cases of Hypothyroidism are caused by the autoimmune disease Hashimoto’s. Come to find out, Hashimoto’s actually is a precursor to Hypothyroidism.
Hypothyroidism occurs after Hashimoto’s has attacked the thyroid enough to destroy it to the point it needs medicine in order to have a relatively normal life. These levels fluctuate from time to time based on many factors.
The issue is that conventional doctors don’t test for Hashimoto’s Disease because they wouldn’t treat it any differently than they would Hypothyroidism. Therefore, if someone is diagnosed as being Hypothyroid, they leave it at that and start the patient on Synthroid or the generic Levothyroxine.
This is literally what my doctor told me when I requested the TPO Antibodies test. She’s an amazing doctor and I now have moved 20 minutes away from her clinic but I still drive there instead of getting another doctor because she actually listens to me, knows I do my research, and is open to ordering tests when I have concerns. It’s not her fault that conventional doctors aren’t trained better in these things. I greatly appreciate her honesty and openness when it comes to me talking to her about unconventional topics and treatments.
I did go to an endocrinologist after I was diagnosed with Hashimoto’s. Though he was listed as one of the top endocrinologists in the metro area of which I live, he ended up not being so great and had I followed his guidance, I likely wouldn’t be a mother as my first pregnancy would have resulted in a miscarriage.
Luckily, I had done my due diligence of research and strongly communicated the research and the testing that I needed to have every 4 weeks starting at 4 weeks of pregnancy. More about that here. His nurses also put in my chart that I did drugs, which I never have done, never will do, and certainly wouldn’t do while pregnant. Luckily I saw this in my chart online and requested they remove it. Of course it was quite the process to have that removed even though it wasn’t true.
I haven’t gone to an endocrinologist since.
If I Could Start Over at Diagnosis
I don’t regret going on the Autoimmune Protocol as it helped me in so many ways. It is rather broad for all autoimmune diseases and is very strict, possibly more strict than I needed. However, I do still recommend it overall.
Since then, Izabella Wentz, PharmD – known as the Thyroid Pharmacist, has come out with the Hashimoto’s Protocol which is what I would follow now if I were starting all over. The protocol goes way beyond just what to eat and not eat, it provides guidance for testing, supplements, recovery, and more. Her basic list of what to eat includes more than AIP but still a bit more restrictive than traditional Paleo. More about her books below.
If I could go back to when I was first diagnosed I’d start working with a functional medicine doctor or certified nutritionist in order to test and determine which supplements I needed to aid in my healing journey. This is something that several years after diagnosis I am finally doing.
I didn’t do it right away because I just wanted to get healthy enough to have kids and then figured after that I’d do all the testing and get myself back on track. I should have done that years ago but as a mom, just like all moms, we get busy and put our health on the back burner.
Until now!
If changing your diet dramatically including removing gluten, dairy, and soy from your diet sounds unbearable, I used to feel that way too. Honestly, once I did strict AIP for 90 days, including the first couple months of my first pregnancy, “just” being free of gluten, dairy, and soy is a walk in the park!
That’s just me though 🙂
Helpful Hashimoto’s Books
You’re Not Crazy & You’re Not Alone by Stacey Robbins
This book is what led to me finally figuring out what was going on with me back in 2014. “You’re Not Crazy and You’re Not Alone” by Stacey Robbins literally changed my life. Prior to finding this book randomly when I was searching for what to read one night when I couldn’t sleep, I had no idea what was going on in my body.
As I mentioned above, as I was reading this book I kept thinking that what she was talking about in terms of her symptoms sounded just like me! I kept disturbing my husband as he was trying to fall asleep, telling him how this lady is describing my life and maybe I have Hashimoto’s Disease!!
Seriously, check out this book if you want to know that you’re not alone and feel validated regarding your symptoms. After this I started down the rabbit hole of researching Hashimoto’s and soon was diagnosed with a blood test.
Fun fact, I contacted Stacey years later when I came across her online and told her how much her book helped me and completely changed my life. We had a nice chat, it was so incredibly cool to be able to talk with her!! I doubt I’ll ever be as influential as her but it’d be cool if someday someone feels that way about me. Lol
Hashimoto’s Thyroiditis Root Cause by Dr. Izabella Wentz
Getting to the Root Cause of Hashimoto’s Thyroiditis is essential to start feeling better. Sure, taking Levothyroxine if you’re hypothyroid will help somewhat but if you want to feel better long term, have less fatigue, support your body, and reduce the attack on your thyroid, you need a root cause approach.
This book is the perfect place to start!
Hashimoto’s Protocol by Dr. Izabella Wentz
Hashimoto’s Protocol by Dr. Izabella Wentz is a great guide of what to do once you’ve been diagnosed with Hashimoto’s Disease. She goes through what Hashimoto’s Disease is, her own Hashimoto’s story, and the Root Cause approach that was discussed in her first book which I discussed above.
Part two of Hashimoto’s Protocol goes through the four fundamental protocols including liver support, adrenal recovery, gut balance, and advanced root cause assessments. There are a lot more tests anyone with Hashimoto’s should go through beyond the typical TSH, T3, and T4 that our doctors tend to order for us. This section helps you figure out which tests you should request and where to get them from.
Part 3 is about the advanced protocols including those for optimizing thyroid hormones, mastering nutrition and nutrients, overcoming traumatic stress, addressing infections (you may not know you have), and removing toxins. Again, a lot more testing you may want to have completed.
I know this sounds really overwhelming, I felt that way too. That’s part of why even though I’ve had these resources for years I’m just starting to get the additional testing now. The shock, confusion, and overwhelm of a Hashimoto’s diagnosis is a lot to handle. Don’t try to jump into everything at once. Take it a little at a time.
Hashimoto’s Food Pharmacology by Dr. Izabella Wentz
Hashimoto’s Food Pharmacology is full of amazing information and recipes that will help you eliminate the inflammatory foods you’ve been eating and nourish your body back to health.
This book is separated into chapters including Hashimoto’s and the Healing Potential of Food, Fundamentals of Nutrition, Tailoring Your Plan, Making it Work!, Frequently Asked Questions, Meal Plans, and the Cookbook!!
As you can tell, these three books do overlap some but honestly, I have them all and find them all to be helpful. Think about it, if someone were to pick up just this book and not the others, they’d need some background information in Hashimoto’s and why one would change their diet, etc.
Helpful Hashimoto’s Websites from Trusted Sources
Izabella Wentz, PharmD, FASCP is the author of thyroidpharmacist.com on which she has a wealth of knowledge within her blog. She struggles with Hashimoto’s as well and has made it her mission in life to help others with Hashimoto’s Disease.
As you see above, I recommend her books as they are full of scientific, research-based information regarding Hashimoto’s. She has the most comprehensive blog posts and books that I’ve seen on the subject.
I’ll link some of her articles below that I suggest you check out first. Granted, anything on her site is full of amazingly detailed information regarding Hashimoto’s and Hypothyroidism.
Izabella Wentz, PharmD published a very informative article about the connection between Hashimoto’s Thyroiditis and Depression, which explains a lot about what’s happened with my lifelong battle with depression.
Top 9 Takeaways for Hashimoto’s
Top 9 Takeaways from 2232 people with Hashimoto’s starts out by her explaining her background and what led her to helping others with Hashimoto’s Disease. She then delves into the Top 9 Takeaways from a survey of 2232 people with Hashimoto’s.
Hypothyroidism, Hashimoto’s or Both?
In this article, Dr. Wentz delves into the similarities and differences between Hypothyroidism and Hashimoto’s disease. She explains why those diagnosed with Hypothyroidism should also be tested for Hashimoto’s.
Top 10 Thyroid Tests
In this article, Dr. Wentz explains the top 10 Thyroid tests you should have completed, far beyond the typical TSH that most doctors order. She also explains the difference between the standard reference range and optimal reference range for your results.
Mainstream Hashimoto’s Disease Resources
If you’d like to see some more main stream or conventional medicine resources regarding Hashimoto’s Disease, check out the links below.
- Hashimoto’s Disease by the Cleveland Clinic
- What is Hashimoto’s Disease? by the National Institutes of Health
- Hashimoto’s Thyroiditis Information by the American Thyroid Association
- What Is Hashimoto’s Thyroiditis? by Endocrine Web
Hashimoto’s Related Podcasts
My Interview on Hashimoto’s and AIP for the Plan to Eat Podcast
I was fortunate enough to be on the Plan to Eat podcast to talk about my journey with Hashimoto’s Disease and how much meal planning has helped me.
The Paleo View Podcast episodes 126 & 127 about Hashimoto’s Disease
The Paleo View is a podcast I started listening to early in my journey. I honestly don’t listen to it anymore but looking at how far they’ve come and how many episodes they’ve recorded is amazing!!
These two are from 2015 during which Dr. Sarah Ballantyne explains the science behind Hashimoto’s Disease with special guest Mickey Trescott, a Functional Nutritional Therapy Practitioner who has Hashimoto’s and uses her expertise to help others on their journeys.
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As a mom of identical twins and a son two years older, I have gained invaluable experience in the realm, and chaos, of parenting. With a Master's Degree and Education Specialist Degree in School Psychology, I spent years as a school psychologist, helping children navigate through their educational and emotional challenges. Now as a stay at home mom and professional blogger, I combine my areas of expertise to help you in your parenting journey.