There is so much going on medically that I’ve decided to start sending periodic updates when I have important appointments or get new information. Just to give an idea of the volume of medical stuff I am dealing with, I had three appointments for myself last week, I have four appointments for myself currently scheduled for this week, plus Geneva’s annual check-up. It’s a lot. On more than one day I spent more than four hours just going to doctor appointments.
Just a summary to bring folks up to speed. I had thyroid surgery on May 27th. I’ve been dealing with the “normal” stuff you expect after thyroid surgery, which is mostly getting the dose of levothyroxine correct (brand name Synthroid). But I also had two major post-surgical complications: damage to my vocal cords and damage to my parathyroid glands.
Now I have a brand-new issue as well, lucky me! One of the appointments last week was to have that weird growth on my neck removed. Given how my luck has been going this year, no surprise that it turned out to be basal cell carcinoma. My dermatologist is out of town so I won’t know how to proceed with that until he gets back next week.
Here’s how each of these issues is progressing. This is summarizing the doctor appointments of the last 10 days.
Thyroid hormone regulation. This turns out to be the easiest one. You can measure various thyroid hormones but the main one is thyroid stimulating hormone (TSH). My TSH has been up and down a bit since surgery, sometimes in stressful and mysterious ways. It was 8.38 on August 2. We increased the levothyroxine to 150mcg. On August 26, TSH was 3.88. This is GOOD NEWS! Increased levo is supposed to make TSH go down so at least the medication is acting properly. Much better than July and August when levothyroxine and TSH seemed to be more or less random.
We are looking for TSH to be 0.5-1.0 so it is still too high. But it’s really only been three weeks since we increased the levothyroxine dose and it takes 6 weeks for the medicine to take full effect. My endocrinologist said we could check TSH again this week or next week, but since I am feeling good, we can also wait and check after September 11th. There are various reasons to wait, but most importantly, I am running the Surftown Half on September 11th and I’d rather not deal with the mental stress of more lab work before then. We do not quite have TSH all sewed up, but I think my endocrinologist and I are both hoping that I am at the right dose now.
Vocal cord damage. This one is mentally and emotionally incredibly hard. I am so grateful to my Uncle Norman who cried with me while we were in Boulder, to my voice therapist Lynn, who is a miracle worker, and to others who have offered sympathy and understanding in various ways. My voice cracks a lot. I have about a three note range. I have limited power to project. If I am talking to just 2-3 people in a small quiet space, the issue is not that noticeable. If there is ambient noise, it’s immediately a problem. Geneva and I love to sing together. We just spent six days in the car, listening to music, enjoying it very much, but NOT belting our lungs out as we should have been able to do.
I am still getting the details on this issue, but it’s starting to sound like there was actual damage done to the vocal cords during surgery. That’s quite bad news. On the other hand, Lynn, who is my voice therapist, is incredible. I go see her again on Friday. Getting appointments with her is almost impossible so that’s a big win. In case you’re wondering, saying something like “You don’t sound all that different” is not a very helpful comment. It can feel like trivialization of the problem. Losing the ability to sing turns out to be an enormous deal. Having to constantly fight to be heard is also not a lot of fun. The voice stuff does not hurt at all. There is no physical pain. But the emotional and mental distress is quite high. I hope that with time and voice therapy from Lynn, I will recover most of my voice and maybe all of it. When that happens, look out, because it’s possible I will never stop singing.
Calcium and hypoPARAthyroidism. In addition to a thyroid, we all have four parathyroid glands, located near the thyroid. These little glands (about the size of a grain of rice) sometimes get jostled during thyroid surgery. They might get disconnected from their blood supply or they might just shut down. Usually this problem resolves within a month. My surgery was three months ago and my parathyroids are not functioning normally. That’s really bad news.
Hypoparathyroidism is not curable. You can manage it with various supplements. Severe hypoparathyroidism is often crippling and life changing. Many people with this condition can not work, let alone run or otherwise enjoy life. It’s quite scary. Luckily, my version is not that severe, at least not currently. Mostly I manage with various calcium supplements. But no one knows what will happen next. Maybe my parathyroids will recover. If you’re the praying type, please pray for that (and also my voice….).
I want to share my current medication regime, which is super boring for almost everyone, but will be critical information if another hypoPARAthyroid endurance athlete ends up reading this. When I wake up, I take .5 mcg calcitriol, 1200 mg calcium (Citracal extended release), and one Tums. I take another Tums at noon. At 6pm I again take .5 mcg calcitriol and another Tums. At 10:30pm, I take the levothyroxine (currently 150 mcg).
In addition to the above, I am experimenting with Tums while running. I usually get a fairly strong tingle about 15-20 minutes into a run and I take a Tums then. Sometimes if I am running longer or it’s a hot day, I get another tingle and need another Tums. Last Saturday for my long run, I just pre-emptively took a Tums every 2.5 miles. With the above normal regimen, plus Tums while running, I only experience occasional calcium symptoms and only while running.
I had blood work done on August 26 and I met with my endocrinologist on August 29. We agreed that the above medication regime is “good enough for now.” TSH needs to come down, but we need to wait and see how that develops. My voice NEEDS to get better, but hopefully time and voice therapy will help. The calcium stuff is wait-and-see if the parathyroids recover. In the meantime, we are going to do blood work once after a long run to see just how low my calcium gets and also on a rest day to see where it is when I am not running.
Because I can’t get enough of doctors, I also decided to have that growth on my neck removed. The pathology came back yesterday: Basal cell carcinoma. I expect I will either have to have Mohs surgery or have some kind of radiation treatment. The dermatologist is on vacation until next week so it’s just more waiting on that issue.
Some days I am more or less okay. Other days I am very, very angry. On the worst days, I am just sad. I am writing this for a few reasons. First, there is almost no information out there about hypoparathyroidism and endurance athletes. Zero research, zero guidelines. So I am putting my own experience out there. Second, this whole process is incredibly isolating. Maybe sharing can make it a little less so. Lastly, I guess it just helps to write it down.