Friday, April 19, 2013

New and Rare

Well, I thought I was out of the world of "chronic illness" in the sense that over two decades of ME/CFS (chronic fatigue syndrome) seems to be mostly behind me, or at least about 90% in remission for over a year now.

I knew I was still dealing with numerous chronic disabilities and pain conditions in the wake of my strokes (several fairly significant ones listed at if you care to read), but I thought that was about it.

Nope, I was just diagnosed this week with a new rare disease, hypoparathyroidism. (I didn't know until this week that we even had parathyroid glads, about 4 of them, rice-sized, attached to the back side of the thyroid gland.) Apparently it is a pretty big deal when they don't work properly, and that mine are under-productive in the PTH hormone, answers so many medical questions. Now if only there were an easy fix... I've already had one lovely allergic reaction to an attempted intervention this week, so we are regrouping and my doctor is coming up with a new battle plan. It will likely take months or years to find a workable solution.

We honestly don't know what caused me to face this ailment. It typically happens in conjunction with thyroid issues, or more commonly, as a result of the removal of these tiny glands in thyroid surgery, something that I have not undergone. I personally believe the level of parathyroid imbalance that we are seeing, that my doctor terms "remarkable," is likely stroke-related (or may have been a mild issue for years, even possibly since birth, but certainly seems severely aggravated into much more significant imbalance by the strokes), but both the kinds of strokes and the type of parathyroid issues we are finding are each so rare, in and of themselves, that no one has yet been able to confirm my theory that the parathyroid issues have developed or intensified due to the strokes. (See update note at the end of page for one possible reason.)

Thankfully God knows, has it all in His control, none of this takes Him my any kind of surprise, and we can trust Him to lead us each step of the way in looking toward new answers.

Update, posted to my stroke blog, July, 2013:

I need to talk over with my endocrinologist about my insistence that my hypoPARAthyroid issues are somehow stroke related.  None of my doctors could see how, and yet I know my body too well to think the timing is just all coincidental. Doing research within the last couple of weeks, I found the potential link between repressed PTH (ParaThyroid Hormone) and Aspirin (I take 2, low dose, per day to keep my blood thin enough to not clot the surgery site of my artery). I brought this possibility up to my neurologist, and while we both agree that the Asprin therapy remains critical and is not optional for me, he does believe there is real merit to my theory that this is the cause of my PTH repression. I will talk over this idea with my endocrinologist at my next appointment in September.