Trying to understand my common autoimmune disease

And finding it unreasonably difficult.

This past April, as I prepared to start a new round of IVF, I underwent a standard blood test measuring thyroid function. The test measures thyroid stimulating hormone (TSH), a hormone which, as the name suggests, stimulates the thyroid to make other important hormones. The higher your TSH, the lower your thyroid function—the body is overcompensating for low thyroid function by overproducing the thyroid stimulating hormone.  My TSH results came back fifteen times higher than the ceiling of the normal range, a level that one doctor said he had never seen, and which another doctor thought was a lab error. Upon retesting, my TSH had come down significantly, but was still quite high, and it was clear my thyroid was way underperforming. The day the re-test results came back, I got a text message from my pharmacy: 

“Your prescription is ready!” 

What prescription? I thought.

I checked my healthcare portal and saw that the fertility doctor had prescribed me, via portal message, a synthetic hormone replacement, levothyroxine, with the instruction start taking immediately. And that was it.

I had never thought much about my thyroid before, the way I don’t think about all my numerous organs and body parts that are quietly working without issue. Suddenly, as I began Googling, (the way one does these days in response to a brief portal message from one’s doctor), it seemed bizarre that I hadn’t considered my thyroid before. Thyroid hormones are paramount in maintaining energy, digestion, and temperature, impacting systems throughout the body from the cardiovascular and gastrointestinal systems to the reproductive and neuropsychiatric systems. Common symptoms of low thyroid function matched uncomfortably with symptoms I had quietly noticed and mostly dismissed for years: extreme fatigue, cold extremities, headaches, digestive issues, even moodiness. 

I proceeded to see an endocrinologist, the specialist concerned with the body’s hormone regulation system. This endocrinologist ran a few more tests, including blood tests for two types of antibodies against my own thyroid. That initial TSH test had showed that my thyroid function was low, and these antibody tests would show if the reason for this was that my immune system was attacking my thyroid gland, in other words, if I had autoimmunity against my thyroid.

“If the autoimmunity tests come back positive,” I asked the endocrinologist over zoom in our first meeting, “what does that mean for me?” 

“If you have thyroid antibodies, it just means you have a higher risk of things going badly in the future,” he said.

Taken aback by this phrasing and unsure about how to respond, I asked, 

“If it turns out I have thyroid antibodies, what would I do about it?” I knew that the synthetic thyroid hormone that I had been prescribed would only replace the hormone that my failing thyroid was not sufficiently making, and would do nothing about an underlying autoimmune process where my immune system is destroying my thyroid tissue. In other words, it would address the symptom but not the cause. So, I wanted to know, what would we do about the actual autoimmunity?

“Nothing,” he responded. “It just means that you have a four percent chance each year of going hypothyroid.” 

I didn’t know what else to ask, so the appointment ended.

Let’s pause here

If you are feeling a little lost at this point, or have some additional questions, I’m with you. Something about a four percent chance each year of something? Something about a higher risk of things going badly in the future? Listening to the doctor, I had the impression that there was a vague storm of unknown type, maybe a bad one and maybe not so bad, potentially (or maybe not!) brewing on the distant horizon of my health. 

When the antibody tests came back a few days later, they indeed showed high levels of thyroid antibodies, confirming a diagnosis of Hashimoto’s Thyroiditis, autoimmunity against the thyroid. Being an avid reader of women’s health literature and particularly chronic disease narratives, I knew that this autoimmune disease is called Hashimoto’s, being, as we’ll see, extremely common in women my age. So I was confused when, in my next visit to the endocrinologist, he did not say the word “Hashimoto’s” until I pressed him with additional questions. It would have been altogether possible for me to leave that second appointment unaware that I had been diagnosed with anything at all. It seemed he found the information unimportant since there was nothing I could do anyways. 

And that was it. Go forth and take the hormone replacement drug indefinitely. 

So that’s how I unwittingly became a thyroid autoimmunity researcher. I’m kidding, sort of. I’m no researcher, but I’ve felt compelled to wade in to the best of my ability—it feels existentially important for me to understand that far-off (or closer by?) storm. For the rest of this essay, I’d like to walk through some of what I have learned in the six months since that diagnosis. I am going to give an overview of the disease, and then focus on a few demonstrative examples of connections that researchers are making between Hashimoto’s management and various dietary and supplemental interventions. This is not meant to be exhaustive, but more an exploration and demonstration of where humanity stands on our knowledge of Hashimoto’s, and how the state of knowledge differs from what almost all Hashimoto’s patients hear from our doctors. 

If you are one of the many women who have, or suspect you have, thyroid problems, I hope this can be a helpful starting point, or that you find one or two nuggets to extend your own research into your disease. For anyone else, it may be interesting to understand the type of thinking emerging behind nutrition and autoimmunity, autoimmunity being a massive and growing disease area in the western world. Additionally, I hope to demonstrate the process by which a very (self-described) rational, science-believing individual can come to distrust her doctor so thoroughly, and show how having an understudied chronic illness can open a person up to the world of maybe and possibly even while maintaining a strong devotion to science. I’ll also explore one of my favorite questions: how our culture, and particularly it’s medical arm, handles complexity and uncertainty, and how we might do it better.