It’s been a few months so I thought I would send out another one of these updates. Everything has been a lot more stable, for which I am exceedingly grateful.
I’ll start with the hypoparathyroidism, as that is clearly the most serious issue. This condition is confusing and sometimes frustrating. If you’re somehow reading about this for the first time or want a refresher course, hypoparathyroidism is an endocrine disorder in which the parathyroid glands do not operate adequately. The parathyroids control the levels of calcium in the bloodstream. A person with inadequate parathyroid function can easily end up with inadequate levels of blood calcium. That can cause muscle cramps of various severities, from annoying to life threatening.
One analogy that helps to understand this disorder is that we can think of the calcium system in your body like a banking system. The calcium in your bones and teeth is like money in the bank. The parathyroids are like the ATM card. They allow your body to access the calcium in the “bank.” With inadequate or goofed up parathyroid function, some bad stuff can happen. One likely outcome is not enough calcium in the blood stream – this is like too little cash. In order to counteract that problem, I take calcium and activated vitamin D supplements every day. But these supplements themselves can cause problems. Sometimes calcium goes into the “wrong” place in your body. The biggest risk here is kidney stones. Taking gobs of calcium would solve the problem of too little calcium in the blood stream, but it would create a significant risk of kidney stones or even things like cataracts or calcifications of the brain. Not good. People with hypoparathyroidism are engaging in a perpetual balancing act. We need to take enough calcium and activated vitamin D that we feel good, but not so much that we end up doing long-term damage to kidneys or other organs.
There’s another wrinkle to this story. Thyroid surgery is by far the most common cause of hypoparathyroidism, but most of the time, the condition is transient. Within a few weeks after surgery, in most people, the parathyroids start working again. Once you are a few weeks post-surgery, however, things get more complicated. People with hypoparathyroidism need to take calcium and activated vitamin D or we can end up with a calcium crash that lands us in the ER. But the activated vitamin D (calcitriol) *might* inhibit the parathyroids from starting to function. It’s possible that when the body is receiving enough calcium and activated vitamin D through supplements, the parathyroids kind of check out and don’t bother doing their job. Doctors and scientists disagree on this point. But, to clarify, It’s possible that the medicine I have to take in order to remain stable is also preventing my parathyroids from recovering.
Since last summer, I have been attempting to wean off of the calcitriol in an effort to promote parathyroid function. I am having some success with this project, but it’s very slow. Last August, I was taking four calcitriol pills a day (.25 mg each). I was able to reduce by one pill in October, one in January, and one in early April. My calcium levels have remained stable! This is really excellent news, but this process is painstakingly slow. I have one pill left to go and I will certainly try dropping it at some point in the next weeks and months. Please pray that this works!
Clearly this situation is complicated and I would love to report that my doctors have been great at educating me as we go along. However, that has not always been the case. I have learned a lot more from talking with other people with hypoparathyroidism on Facebook and reading scientific journal articles. I don’t want to sound too snarky here. I’ve had some excellent medical care. But there were also some significant gaps in care that ranged from annoying to dangerous. That shouldn’t happen. My advice, beyond Be Kind Always, is not just to advocate for yourself. People with chronic medical conditions can’t always manage that. Instead, find someone to help advocate for you and take this person with you to stressful medical appointments. And also, Be Kind Always.
I’m very happy to report that most of my other health concerns have faded a lot. Skin cancer turned out to be absolutely trivial compared to the other things I confronted over the past few months. The Mohs surgery was straightforward and successful. I have a very small scar on my neck and above average visits to the dermatologist in my future. Poor Geneva’s heart was scarred more than my neck – she still gets quite fretful whenever she hears people talk about cancer.
We have found a dose of levothyroxine that seems to be working well at keeping my thyroid hormones stable. I’ve been on the same dose since last November and feeling good. Not everyone has that outcome so I am very grateful.
I made a lot of progress working with the voice therapists at Yale. Lynn and John were unfailingly encouraging and kind, bright lights during one of the most difficult phases of my life. My voice has improved enormously in every measurable way: I have much better range, better volume, more fluctuation in pitch when I talk – you name it! I can even sing! That said – it is not the same voice I had before surgery, not even close. I have barely enough volume to get a classroom full of talking students to be quiet. I can sing alone, when I set the pitch, but singing in church is much harder. At the recommendation of my wonderful voice therapists, I am transferring care to a therapist who specializes in vocal performance. I hope to recover not just more ability to sing, but also the ability to lecture for longer periods of time, something that I need to do for work. In the meantime, I’m on a short break from voice therapy, meaning I have 3 extra hours every Friday! Enough time to write this update and get started reading some senior theses.
Thank you for reading. I am not sure why it turns out to matter that people try to understand these experiences, but it does. I am a different person than I was a year ago in a lot of ways. I value the love and support of friends and family more than I can possibly express.