Note: This post was drafted approximately two months prior to publication.
The first time I (Heidi) remember having my thryoid checked was November of 2015—the same day I was tested for celiac disease. I saw a nurse at my family doctor’s practice, I described my symptoms, and she ordered lab work, which included a test for celiac antibodies and a test checking my thyroid stimulating hormone (TSH).
Celiac Diagnosis and TSH
A few days later, the same nurse called me to let me know the results of the blood tests. First, she let me know that I’d tested positive for celiac disease, told me that the only necessary treatment was following a completely gluten-free diet, and offered to refer me to a nutritionist if I was interested. Next, she mentioned that my TSH had been high and suggested that we follow up with a second test at a later date to see whether it continued to test high.
Celiac disease completely turned my life upside down. Worrying about TSH wasn’t high on my list of priorities. Figuring out what to eat for dinner that night, learning about celiac disease, and scouring the internet and placing phone calls as I tried to unravel the mysteries of cross-contamination pretty much consumed my entire medical attention.
Five months later (in early April), I repeated the TSH test and tested high again. This time, I didn’t hear anything back from my family doctor. I actually learned of the results of my TSH test from another doctor (because doctors can call and find out your test results). I had seen great improvement on a gluten-free diet, but I still had some unresolved symptoms. I’d learned enough about celiac disease by that point to know that I probably should have had an upper endoscopy before starting a gluten-free diet to confirm that diagnosis. So, I’d found a gastroenterologist.
GI doctor and T4
My gastroenterologist reviewed my symptoms, ordered lab tests, and scheduled an upper endoscopy. He saw that my family doctor had checked my TSH and expressed his opinion that TSH really doesn’t matter. If I was experiencing symptoms of hypothyroidism (as high TSH would suggest), he said that I really needed to have my T4 checked. (Basically, my GI doctor told me my family doctor was wrong.) The labs for my T4 came back normal. The endoscopy also came back normal (only very trace signs of damaged villi, indicating good recovery). After a few visits, I realized that I wasn’t making much progress by continuing to see my GI doctor, and I decided to take a break.
Family Doctor and TSH
November rolled around again, and I had my annual appointment with my family doctor. We talked about celiac disease. I’d hoped to repeat the celiac lab panel, since my numbers had still been abnormally high when my GI doctor check them in April. My family doctor explained that he would not run those tests, since it wouldn’t change my treatment plan. A few of his comments about celiac disease raised red flags for me—he’d never heard of cross-contamination being an issue, he referred to my condition as an allergy on more than one occasion, and he expressed the possibility that I could grow out of it.
Grow out of a genetic autoimmune condition??? (If science figures that one out, I’ll be the first in line.)
Almost as an afterthought, we reached the issue of my thyroid in our conversation. He looked at my labs and said that he’d run the TSH lab one more time and then put me on a synthetic T4 medication. That surprised me! What about my normal T4 test in the spring? Even more surprising though was the comment that followed—my family doctor told me that my gastroenterologist was wrong: checking T4 didn’t matter. According to my family doctor, TSH is what the brain is telling your body. If we can’t trust the brain, we can’t trust anything. I asked about seeing an endocrinologist, which he shot down as totally unnecessary.
So I sat there, reeling in shock as he zipped through the charts checking boxes. Normal. Normal. Normal. Normal. And rushed me out of the office to see his next patient.
Oh what irony. I would have had something different to say—if I’d been asked.
Looking for Something Better
I’m not really sure what normal is anymore. I’m pretty sure that waking up exhausted after a full night’s sleep isn’t normal though. Headaches that last for days on end can’t be normal either. Lying wide awake in bed for hours even though your little one is finally sleeping through the night (well, sometimes) probably isn’t normal either.
Next step? Call Mom and talk to her (because we never outgrow having a mom).
Over the next few weeks, I read anything and everything I could find online that seemed relevant to my thyroid dilemma. One thing I knew was that both of my doctors were wrong—that was the only thing they seemed to agree about. I wasn’t in any rush to start a synthetic T4 medication under my family doctor’s care, so I started looking for other options. With the help of a friend, I found a good endocrinologist in my insurance network and scheduled an appointment. For mid-May. In early January, that was the first opening. Obviously, I haven’t seen that doctor yet.
And probably, I never will. It turns out that talking to a Mom is a very handy thing to do. She stumbled upon a functional medicine doctor (a practicing chiropractor) about an hour away.
Functional Medicine and the Big Picture
I was a little concerned about choosing a treatment option outside of my insurance resources. But, I’d pretty much exhausted my available resources for the time being. I’d also learned a lot about thyroid testing and treatment options, and I had a good idea what I was looking for. One particularly helpful resource for me was HypothyroidMom, which offered a lot of helpful articles including explanations of different thyroid hormones and antibodies and why it can be important to test them.
Functional Medicine was new to me, but after I asked for more information from Corrective Chiropractic Neurology and Functional Medicine Center, I knew I would have to give it a try. They emailed me a PDF with information about the tests they typically run, in addition to some general information about their treatment philosophy.
After an initial evaluation, I’m already feeling more confident about taking a more natural treatment approach.
For Hashimoto’s. It turns out that I really did need additional thyroid testing—just checking TSH and T4 would never have let me know that I actually have an autoimmune thyroid disorder. Taking a synethetic T4 medication might offer relief from many of my thyroid symptoms, but it wouldn’t help my immune system and gut recover and help me become really and truly well.
The next steps will be hard and will definitely require making some uncomfortable lifestyle changes—like cutting out a lot of foods that I LOVE from my diet. The idea of feeling tired and sluggish and cold for the rest of my life sounds a lot worse though.
Looking back, it’s a lot easier to understand what’s been going on with my thryoid—and how I might have acted sooner. My hope is that hearing my story will help someone else, somewhere, someday, start looking for the help they need and lead a better life.