My Journey to Diagnosing Hashimoto's Disease and Embracing a New Normal

I never would have thought that a tiny little butterfly-shaped organ would upend everything in my life. I'd lived my entire life without thinking much about my thyroid, or not thinking about it at all, really. You hear all the warnings about heart disease, blood pressure, diabetes, eating right, and all the standard concerns that come with living a healthy life. You do your best, some better than others. I struggled with this, but overall, I was healthy-ish. After I had kids, I gained weight and was living the curvy girl life. Then I lost a good amount of weight after getting divorced and losing my father; depression can do that sometimes. Around 2013, it all came crashing down.

It started with what I thought was the flu. However, this "flu" just kept getting worse. Hours turned into days, days into a week, until finally my husband decided I needed to be taken to the hospital. They ran tests and sent me home with no diagnosis. Three days later, they called and told me I had an E. coli infection, and I needed to get medicated immediately. I know they say E. coli symptoms only last 5 to 10 days, but I didn't begin to feel normal for months. It was likely the sickest I've ever been. For months, I was weak, dizzy, and exhausted.

Initial Symptoms

The thyroid is a puzzle, and sometimes a few pieces are missing.

Finally, I tried to get back to normal life. As days and months passed, I noticed little things that eventually became big things that changed my entire life. The exhaustion became a daily event that, on some days, was all-encompassing. My brain, which had always been sharp and focused, became foggy, unable to remember even the little things or multitask. I started to gain weight, and not just a little bit. My skin got dry, and I became depressed. These things were not even the worst of my issues. My voice started to get hoarse. I had trouble swallowing things, and eventually I had trouble breathing.

Of course, a normal person would go to a doctor for answers, but I am not a normal person. I've always hated going to the doctor. I feel like they don't listen and haven't helped when I have gone to them with issues. I want to clarify that these are just my personal experiences, and I know there are amazing doctors out there who listen and care. I just seem to have a superpower of finding non-empathetic doctors. So, I ignored symptoms and tried to go on with my everyday life. At this point, I had a preschooler at home to chase around, a part-time job at a university, and I was writing my first book. Life was chaotic at best, most days. Chasing a toddler, cooking, cleaning, working, and writing, all while exhausted and wandering around, wondering why I couldn't remember anything anymore.

It was a dentist appointment that finally brought eventual clarity to what was causing all these symptoms. My dentist does a thorough exam at each checkup. That includes feeling the glands on the neck. After his normal exam, he asked me if I knew that my thyroid gland was enlarged. I, of course, had no clue. I went home, made an appointment, and started researching. First, I had to understand the thyroid, which had not been on my radar before that day. After gaining some knowledge of all the amazingly complicated things that little butterfly-shaped organ is responsible for, I started looking into what having an enlarged thyroid could mean. I started learning phrases like nodules, autoimmune diseases, thyroiditis, iodine deficiency, and thyroid cancer. While none of those options sounded good, some sounded manageable, and others sounded downright frightening.

The Diagnosis Journey

Ultrasound image of a thyroid.

Waiting is the worst. Why does it take so long to get in to see a specialist? Once you find out there's a problem, you want answers as soon as humanly possible. I just wanted to know what was causing this enlargement and how to fix the problem. In no way was I ready to learn that everything about my health would change.

It was about two months before I could get in to see the local endocrinologist. My primary physician had ordered a thyroid ultrasound in the interim, so I had confirmation that I had multiple thyroid nodules on the left side. I was also having increasing issues with swallowing and breathing. I am a person who sings a lot. I sing in the car. I sing in the shower. I just love to sing. It makes me happy. It relieves stress. That tiny little butterfly-shaped organ and its issues were even taking that away from me. I got to a point where I couldn't sing.

My first visit with this endocrinologist went well, or so I felt at the time. He listened to my symptoms, did an exam, and reviewed the ultrasound and labs I had before the appointment. The doctor then discussed the possible causes of the nodules and the next steps. Of course, the causes were everything that I had found during my research sessions. So, I walked away from the office that day with no answers, but at least I knew there was a plan in place to get them.

The next step in trying to determine what was going on with my thyroid was a procedure called a fine-needle aspiration, or FNA. This procedure requires a doctor to use a thin needle and a syringe to remove part of a nodule, which is then analyzed for cancer and other conditions. I have a fear of needles, so the idea of someone sticking a needle in my neck didn't sound like a good idea at all. However, it was necessary, so I made myself be brave. I had had positive prior interactions with one of the few local doctors who could perform the procedure, so I chose to wait a little longer for him to do it. Everything went well on the day of the procedure, and other than a small bruise at the site, I had no issues whatsoever.

In fact, the most difficult part of the FNA was waiting for the results. In 2013, things moved much more slowly, especially in small rural areas. The wait felt like it lasted a lifetime. It was a lifetime of weeks that I spent trying to keep my focus on being a wife, mother, learning consultant, and writer. I got up each day, chased my toddler, cleaned, cooked, wrote, and worked if I was scheduled. I also spent each of those days trying to smile while wondering, worrying, and stressing. The possibility of cancer isn't something you forget about while you are waiting for test results.

Finally, the results came in, and I felt so blessed to learn the nodules were benign. I was so grateful; the relief was tremendous. It took me about a week to realize that while I wasn't dealing with cancer, I was dealing with a condition that would change my life forever. Something that would change who I was. Something that could, on some days, drain every drop of energy. That tiny little butterfly-shaped organ and its dysfunction changed me.

I cannot say I am healed because that won't happen for me. I can say that I have learned, researched, grown, and changed in both good and bad ways. Every day, I learn more, and it's time for me to share my journey and what I have learned. Hopefully, I can help someone else who might be struggling at the beginning of this journey. If I can help even one person, it's worth it. I hope you'll follow along with me. Ask questions, tell me your stories. Am I an expert? No. I'm just a girl with half a thyroid and an ongoing journey, who loves researching and sharing information.

If any part of my story sounds like yours, share it in the comments so others know they’re not alone. And if you’re newly diagnosed with Hashimoto’s, drop your biggest question below—I read every comment and would love to support you.