When “Okay” Isn’t Okay: Learning to Live With Hashimoto’s

Living With Hashimoto's: When the Diagnosis Is Only the Beginning

Living with Autoimmune Hashimoto’s Thyroiditis has been, at least for me, like riding a roller coaster. Some days are up; more days are down. The challenge is to make the most of the up days and give yourself and your body grace on the down days.

After I had surgery to remove half of my thyroid gland due to a large nodule that had been making my life miserable for months, I hoped that I would start feeling normal again so I could happily get back to my life as a wife, mom, writer, and college tutor. That, unfortunately, was not the case. Some things did get better. I was able to breathe and swallow better, which was definitely a blessing. However, the exhaustion and brain fog stuck like glue. I hoped that maybe I was still recovering from surgery and that the exhaustion and brain fog would eventually resolve. No one had told me about a thyroid-related diagnosis at that point.

When “No Big Deal” Changes Everything

“Excuse me, ma’am, but this will change my entire life!”

My follow-up with my surgeon was amazing. He said that I healed perfectly, even though I was in the hospital a bit longer than expected. My incision looked great, and he said the surgery couldn’t have gone any better. I will be forever grateful to him for taking such good care of me. The follow-up with the endocrinologist wasn’t quite as wonderful. She told me that, because she works with patients through The James Cancer Hospital, she could no longer see me, as my nodule was benign. She told me to follow up with my primary, and that’s about it. As I was reviewing my paperwork in the office before leaving, I saw the diagnosis from a biopsy of the nodule: Autoimmune Hashimoto’s Thyroiditis. She hadn’t mentioned it at all, so I did. She said it was no big deal, that I might need meds, but it was nothing to worry about. Looking back now, I would like to reply, “Excuse me, ma’am, but this will change my entire life!”

I remember the drive home as long and filled with confusion. My husband and I discussed this new diagnosis and hoped that the doctor was right. Maybe I would need a pill, but then I could go back to living my life. I must be honest; I was a bit annoyed by the idea of having to take a pill every day. I’ve never been a pill or medicine girl. I don’t like prescriptions. I prefer natural supplements if I need to take something. I reassured myself with the fact that the doctor had said maybe I would need a pill. I’d always been relatively healthy before, so I thought I’d just spring back and no prescription would be necessary.

Waiting to Feel Like Myself Again

“I was just plain tired and sad.”

Once I recovered from surgery and was released to return to work, I attempted to do just what I had hoped I would. I got up each day. I chased a toddler. I tried to write my first book. I cleaned the house. I went to work. I did laundry, cooked dinner, baked, and all the other things that had always been my life. What I found was that chasing a toddler was exhausting, even on the best day. Cooking and baking were just too much on many days. Work was overwhelming, and writing… well, that seemed impossible. My brain was foggy, and problem-solving plot issues became a challenge.

I did not snap back as I hoped. I hoped the pill would help. So, at my next visit with my primary physician, I brought up my current struggles and told her about the diagnosis from surgery. She said she would check my TSH (thyroid-stimulating hormone) level, and if it was out of range, then she would write a prescription.

I did the blood tests. Not surprisingly, the TSH came back just slightly out of range, so she reluctantly agreed to prescribe levothyroxine. I took it as prescribed, religiously. An hour before any food, first thing in the morning. I gave it time to work, waited weeks, hoping to feel better. I did not feel better; if anything, I was more run-down. I was gaining weight, and I didn’t have the energy to devote to exercise. I struggled to keep up with everything that my life demanded of me. I was just plain tired and sad.

When “Okay” Doesn't Mean Okay

The next time I was at the doctor, I told her that I was really struggling, and that the medication did not seem to be helping. She ran labs once again, TSH only, and said my numbers looked “okay,” so she wouldn’t be making any changes. I was more than frustrated, so I started researching. The more I researched, the more I learned, and the more frustrated I became with the medical professionals that I had worked with.

Looking for the Missing Pieces

As I researched, I learned there was more to understanding thyroid disease than the single TSH number I had been hearing about. I learned about free T4, free T3, and thyroid antibody tests, as well as other tests that doctors may consider based on a person's symptoms and overall health. I also began reading about things like Vitamin D, Vitamin B12, iron, and ferritin. No one had even mentioned T3 or T4 to me.

So, I researched everything. I started by doing a deep dive into the thyroid, the hormones involved in its function, and the other organs that work with it to regulate metabolism. Once I had an understanding of that, I began researching lab tests and results for people with Hashimoto’s. I developed a list of questions to ask my doctor based on the results from my blood tests and how I was feeling. Finally, I spent a ton of time looking into natural ways to try to help. I read about soy, dairy, gluten, lifestyle changes, and supplements that some people with Hashimoto's said had helped them. At the time, I added selenium, zinc, and vitamin D to my supplements and tried to reduce my iodine intake.

I read that stress is a trigger, so I tried not to stress about every little thing. That was, and still is, my biggest struggle. Everyone deals with stress—whether it's the little things throughout the day or big things that pop up—but I have always been an overthinker who worries about the little things. Oddly, when I tried to reduce stress, I just stressed about not stressing.

Finding a New Normal

“I found a new normal and continued to look for the missing piece that would help me solve the puzzle of my endocrine system.”

I tried a gluten-free diet for a year. This was before it was popular to be gluten-free, and premade items were not easy to find.  I also eliminated soy as much as possible. Unfortunately, for me, this didn’t really help me feel better. I did learn to function better with my symptoms. I found a new normal and continued to look for the missing piece that would help me solve the puzzle of my endocrine system. Eventually, I got a referral to another endocrinologist who was a couple of hours from home. And so began the next turn in my journey with Hashimoto's.

Have you found all the pieces to your puzzle yet, or are you still looking? What has worked for you and what hasn’t? While our diagnoses might be the same, our puzzles may be different. Feel free to share what you’ve tried or ask questions in the comments below. Sometimes hearing someone else's experience can help you find new questions to ask. If you'd like to continue the conversation, subscribe or join our community. I'd love to walk this journey with you.

A quick note: I'm not a doctor or medical professional. I'm sharing my personal experience and the things I chose to try after doing my own research. What helped—or didn't help—me may be different for you. Please talk with your healthcare provider before making changes to medications, supplements, diet, or treatment.

One step at a time.

One day at a time.

You're not walking this road alone.

With hope,

Chelle