Adventures in Medical Care (Parathyroid Madness!)

It's been a year, people.

Actually, it's been slightly longer, as bloodwork from January 2023 indicated that I have hyperparathyroidism (namely that my parathyroid hormone level is high while my blood calcium is also high; they're supposed to have an inverse relationship when all is working properly).

My calcium is just over the border of high, so I haven't needed any treatment for that, but we have realized since last fall that I do need surgery to remove whichever parathyroid gland(s) is(are) responsible for the misfiring.

During the past year, I've had further bloodwork, a couple of urine samples (including the 24-hour one I mentioned previously), a neck ultrasound, and two biopsies of an adenoma on my thyroid.

Everything keeps confirming hyperparathyroidism, and a bone density scan revealed that I have osteopenia, which is some loss of bone density but that can but isn't necessarily a precursor to osteoporosis. The problem is that the parathyroid is supposed to sense when your blood calcium is low, and it "tells" your bones to release some calcium to make up for it. Hyperparathyroidism is when your calcium is fine (or, in my case, borderline high), you're continually leeching calcium for no reason, thus putting your bones at risk.

Another risk is kidney disease, as the excess calcium can cause the kidneys to have to work harder to filter it out. My most recent urine sample revealed a lot of stuff that shouldn't be in this waste product: epithelial cells, protein, too-high ph... it's just a cloudy mess. 

SO... I was referred to an endocrinologist early last year and to an endocrinology surgeon months ago. I had an appointment schedule with the surgeon for March 25, but apparently the doctor ended up planning to be out of town and they rescheduled to June. 

This was an inconvenience but not a huge problem until recently. My first biopsy came back with no results, so we had to do it again. The second time, the endocrinologist took an extra sample to send off for DNA testing in case the "standard" assessment was inconclusive again.

It wasn't. It came back "suspicious as cancer" (of the thyroid; parathyroid cancer is extremely rare and you're not supposed to do fine-needle biopsy on the parathyroid as you risk "seeding" any cancer that might exist, since the gland is about the size of a grain of rice) and will likely result in my having to have half of my normally-functioning thyroid removed. That might fix the hyperparathyroidism, as it's right up against my left anterior parathyroid gland. But I'll find out more when I see a totally different endocrinology surgeon (one who is widely respected as an expert in this field) in TWO WEEKS (rather than two months; sorry, Baylor, Scott, and White... you just couldn't perform adequately this time).

It seems like during the surgery, they at least want to "visualize" all of the parathyroid glands just to make sure they're okay. Some people have more than 4; others have visualizations on only a few because one of them has moved into their chest somewhere. I don't think that's the case with me. I believe the ultrasound tech was able to find all of my glands.

Anyhoo, I have an appointment with my endocrinologist Wednesday and can't wait to tell her that I'm pretty disappointed in the care I've gotten so far. Much of what I've learned about my condition, best practices, and what is going to happen in the future has been from an online community. They're the ones who made it clear to me that I didn't understand what was happening, and who prodded me to read through the medical notes and imaging results to look for specific things. I feel like my doctor should have explained everything more clearly, since I know doctors don't love people consulting "Dr. Google."

In terms of symptoms, I'm not aware of any. I do experience GERD, and have for years before my numbers were wonky. Three weeks ago, I got off of omeprazole because it's not really for long-term use, and it runs the risk of both bone loss and kidney disease, and I figured my body did not need another threat to deal with. So far, I've been less-than-ideally comfortable, but I'm managing. I'm also hoping that maybe surgery will help a bit with that? Excess calcium triggers your stomach to produce more acid.

I might occasionally have fatigue and brain fog, but it's hard to know whether that's from perimenopause, having a 9-year-old as a middle-ager, or hyperparathyroidism.

What I'm saying is that I feel "normal," which is pretty darn good. But if I had surgery and felt even better, I would not be mad about it! I'm looking forward to getting it scheduled and over with, so I can fully recover before our trip to California for Mal's 10th birthday!