I ❤ Pig Thyroid

Things are much better than last time I wrote. Much, much better. There have been ups and downs, and I don’t feel very confident that they will stay better, but for the last couple of weeks my ability to function has felt within the ballpark, at least, of normal.

What has changed? My best guess is pig thyroid. As those of you who have followed this very exciting saga may recall, my real struggles began not with cancer treatment but a thyroidectomy that closely followed. While most people do fine after a thyroidectomy by taking a simple pill, I did not, and in the year-and-a-half since mine, things have mostly ranged between “hanging in there, barely” and “just surviving each day.”

I felt exhausted—the kind of exhausted where you can barely lift a finger as you lie in the bed. I felt a kind of bodily illness that I call “thyroid-y,” which is indescribable but very much physical; the closest I can come is that it feels a bit like being mildly poisoned while also on the edge of nausea. Worst of all, my brain didn’t work—in a way that not only prevented me from being able to do intellectual work or, sometimes, even hold the thread of a conversation, but that felt like an active cloud of noise blocking my consciousness all the time. I experienced this not as an absence—the loss of capacity to do things I once could—but as a terrible presence, an internal sensation that could be more or less intense, but the loudness of which demanded my constant attention.

I did not find the medical community terribly helpful with any of this. The best practitioners sympathetically suggested I try things that helped marginally or not at all; the worst would not acknowledge the reality or intolerability of my experience and implied that this was just how things were now and I should try getting used to it.

As I pursued various options, unsure what combination of illnesses or treatments had caused these symptoms and what might reduce them, trying to get the thyroid medication “right” was a constant thread. Thyroid medication has a narrow therapeutic window; 10% too much or too little will throw you out of range. At the same time, food, drink, and many medications interfere with its absorption. To further complicate things, there is also controversy over whether some patients need T3 (liothyronine), to minimize symptoms in addition to the T4 (levothyroxine, also known as Synthroid) that has been the standard treatment for forty years. (The consensus seems to be shifting toward “yes”—but only in the last few years, and many physicians remain opposed to prescribing T3.)

I tried so many different doses of these medications, alone and together. My levels would go too high, and I’d feel terrible. Then they’d go too low, and I’d feel terrible. Then they’d be normal-but-perhaps-not-optimal, and I’d feel…maybe not quite as terrible, but still not good, and I’d think that maybe changing another smidge, or taking a slightly different proportion of the two, would improve things, but would end up going out of range again and feel worse. And each dose change required a 6-8 week waiting period to evaluate its full effect.

Finally, in December, I asked if I could try “natural thyroid,” or desiccated thyroid extract (DTE). This is a pill made from the ground up thyroids of pigs. It was the standard treatment from the early 20th century, when it was developed, until 1970 or so. It is not favored by the medical community because its strength is less standardized and it contains a non-physiologic ratio of T3:T4 (pig thyroid contains more T3 than humans produce). But there is a vocal, if sometimes quackish, segment of the thyroid patient community that swears by it, and an unresolved debate in the medical community, as well, over whether it might better reduce symptoms for at least a subset of patients.

My first dose of DTE was clearly too low; my TSH shot up to 14 (normal is 0.5 to 4-ish) and I felt terrible. After a dose increase, I felt significantly better for a couple of weeks, then things got worse again; TSH was now about 9. About three weeks ago, I increased another notch, and this has been the best stretch I’ve had in six months. I won’t test for another three weeks, so I don’t know if this is the “final” dose, but I am finally feeling hopeful.

And even more exciting for me, I’m finally able to work—doing not just the bare basics of getting through meetings and emails, but reading and thinking and learning. I have been doing a deep dive into Progressive Era thought and politics, on which more to come, with an eye toward thinking about moments of intellectual transition, in which new frameworks for understanding the social and economic world rise and become naturalized. Most of my research focus has been on a different such transition—the “neoliberal” one—and a lot of people hope that we could be at a similar moment of transition today. So, it is looking further into the past with the explicit intent of being able to better inform the present.

I have also thought about writing a review essay on a new book, Rethinking Hypothyroidism: Why Treatment Must Change and What Patients Can Do, drawing on both my personal experience as well as my sociology of science interests. Written by a former president of the American Thyroid Association, it opens all sorts of interesting about why the standard of care is what it is, and why so little has been done to change it when there are clearly a large number of people—a million in the U.S. would be an extremely conservative estimate—for whom it does not resolve the symptoms of hypothyroidism.

It is possible that things will tank again, and my hopeful plans will fall by the wayside; after a year and a half of up and (mostly) down, I’m hesitant to get my hopes too high. But in the meanwhile, I’m deeply grateful to be feeling…okay. Feeling okay feels really, really good.

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