Does The World Need To Know About My Thyroid?

It’s my blog so I guess the world needs to know whatever I feel like writing. I have pictures, but I don’t need to post those here.

I’ve had thyroid “stuff” since long before I was a runner. Way back in grad school, my doctor said, hey, we need to check out that lump in your neck. I’m surprised I even had a doctor in grad school. I did have a lump on my neck, thyroid nodules it turned out. We had it biopsied and the results came back benign and I forgot about it. I don’t remember being very stressed about this process, which probably tells you how stressed I was about grad school.

After giving birth to Patrick (aka Aidan), I struggled to lose the pregnancy weight. Eventually I joined Weight Watchers, learned something about nutrition, and the weight came off. After giving birth to Geneva (aka Rose), we went to Germany for the summer so I could do research. The weight fell off and I figured I had found the magical combination: breastfeeding, lots of walking, plenty of cake and beer. The perfect postpartum diet. Except that a few weeks after we came home, I was walking up our basement steps and I thought my heart was going to burst out of my chest. My blood pressure was beyond through the roof, at something like 240/160. I was put on beta blockers immediately and within a few weeks, we discovered I had hyperthyroidism, presumably brought on by pregnancy. Because I was breastfeeding, I went on a medicine called PTU. The hyperthyroid symptoms were well controlled. When I quit breastfeeding, I switched to methimazole. We’ve adjusted the dose a couple of times since then, but generally speaking, my labs have been good and I’ve felt fine.

I’ve had thyroid issues for so long that I’ve gone through three endocrinologists. My first one, Dr. Kort Knudsen, was a lovely Oberlin grad and I remember talking about Oberlin a lot more than my thyroid. After he retired and moved to Florida (the nerve!), I switched to Dr. Grace Lee at Yale. Dr. Lee was fine, but I hated everything about going to Yale. I hated the drive. I hated the parking. I hated having to put on a hospital bracelet. I hated it all so much that I sometimes let too much time pass between appointments, which was not very adult of me. Sometimes being a grown-up is hard.

Dr. Lee first began urging me to consider surgery years ago. The thyroid nodules had grown larger. But, we checked them periodically. They were always benign. I figured “If it ain’t broke, don’t fix it.” Eventually Dr. Lee changed positions and I switched to Dr. Christine Signore, who is, thank goodness, in Middletown. I changed doctors in summer 2020, mid-pandemic, which wasn’t simple. But we got my methimazole prescription transferred, I eventually met Dr. Signore in person, and I was trucking along again.

The first week of May 2021, I ran a really lousy 5K in Providence. That wasn’t surprising. I’d been running shitty 5Ks all spring, my running fueled by pandemic-inspired rage. What *was* surprising is that I almost feel asleep while driving to the race. I told myself I was tired from a lot of travel, a difficult semester, a weekend in Boulder in the thin air. But then my routine thyroid blood work came back out of whack. I had slipped into a hypothyroid state from too much medication. We lowered my dose of methimazole. Now I think those shitty 5Ks might not only have been due to poor race execution.

In January 2022, we did a CT scan of my thyroid. Dr. Signore had suggested this procedure to get a baseline of how large the thyroid nodules were. I work well with Dr. Signore because she doesn’t tell me what to do. I strongly suspect most endocrinologists would have recommended that I have surgery long ago, but I did not want to go that route. You can always cut, but you can never uncut. The CT scan showed that the thyroid nodules were pushing on my trachea though. We’d done multiple biopsies and countless ultrasounds and thank God, nothing looked like cancer, but the nodules were growing. Eventually, the thyroid would need to come out.

If you’ve ever raced a 5K or done a really hard workout, you know that feeling that there is not enough air in the world. You simply can’t suck it into your lungs fast enough. Now imagine running your hardest, sucking wind like crazy, with the image in your mind of a little lump pushing your windpipe closed. I scheduled a consult with the surgeon in February 2022.

Dr. Signore recommended Dr. Courtney Gibson at Yale and frankly, Dr. Gibson knocked my socks off. She was compassionate and smart. She took time to answer all my questions, and yes, you know there were many questions. She never promised everything would be perfect. These two doctors have unfailingly treated me with respect. They understood that as a professor, I talk and think for a living. A surgery that potentially impacts my voice and my mind is a big deal. They understood that being an endurance athlete is a critical part of my personality, not just a “hobby” and that I needed to know how surgery would impact my running. I talked with them, as well as coaches and mentors, about timing the surgery to minimize the impact on my job and my running. A late May surgery date meant I had time to recover from the Boston marathon and finish the semester. Hopefully I would be sufficiently recovered to attend a professional conference in Portugal in late June. If we got the meds right, I would be able to resume training once recovered from surgery.

Surgery was May 27, 2022, and everything went well. I was really scared beforehand. I did a pre-surgical meditation recommended by a friend and that was really helpful. Other friends brought in dinners and that was amazing. I spent a couple of days flopped on the couch. I was able to start walking for exercise about three days post-surgery. The first ten days or so I did a lot of walking. I was also able to see some students from the class of 2020 who returned for their make-up commencement and I was able to march in Middletown’s Pride parade. I did a short run/walk ten days post-surgery. By two weeks post-surgery, I could run five miles with a short walk break. By a month post-surgery, I was back to running just over 40 miles a week. Easy miles are coming along a lot better than anything speedy, but that’s getting better also.

At 26 days post-surgery, I had my first blood work checked. My TSH was 6.8. We are looking for it to be between .5 and 1.5, preferably around 1.0. I was officially in a hypothyroid state of mind (and body). I was not surprised by that result because I felt tired when I got out of bed in the morning and I was falling asleep watching TV at night. We adjusted medication from 125mcg of levothyroxine to 137mcg.

I find myself saying “we adjusted medication” the same way some runners say things like “we scheduled a 17 mile long run for Saturday” when what they mean is: My coach put 17 miles on my schedule for Saturday. “We” did not adjust the medication dose – Dr. Signore adjusted the medication dose. That’s hard for me to swallow because I hate not being in control. In the week when Roe versus Wade was overturned, I am thinking a lot about bodily autonomy. Who should get to decide how my metabolism runs? Shouldn’t that be my choice? My choice with medical guidance, sure, but it is my body. I should be the one to decide. I suspect many people with defective thyroids are happy to hand over the reins to a doctor. But I know that many people with defective thyroids also believe, usually with a lot of justification, that their doctors do not listen to them and do not take their concerns seriously. So far, I am happy with my medical care, but I actually do think it’s worth contemplating why we don’t have patients make these decisions rather than doctors.

More soon, because if life without a thyroid wasn’t interesting enough, fate decided to throw Covid into the mix as well.

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