I had the quarterly appointment with my nephrologist the other day - one of the "bonuses" of being on Jynarque is that they monitor, monitor, monitor the heck out of you.
And I'm happy to say that all my levels are stable - eGFR (we've decided to call me early Stage 4 since I've been teetering between 3b and 4 for the past 5-7 months), liver enzymes, calcium, phosphates, glucose, potassium, sodium, Vitamin D...
Oops! Then there's that nasty Intact Parathyroid test. TOTALLY different story... Not only is it higher than last year - and increase of 75% - but now I'm outside the normal range.
Sound the alarms! But wait. What exactly is the parathyroid? What does it do? And is this normal for a Stage 4 PKD patient?
The parathyroid glands (four of them) are about the size of a grain of rice - or a pea, depends on your source - and they are located on your thyroid. They release a hormone (PTH) that regulates the amount of calcium in your blood and your bones. If your PTH level is too high, your body effectively 'robs' your bones of calcium to maintain the proper level of calcium in your blood. Not surprisingly, this can lead to weak bones and osteoporosis.
According to my doctor, secondary hyperparathyroidism (which is what I most likely have) is common in people with chronic kidney disease. But generally, people have low serum (blood) calcium, high phosphate or low Vitamin D levels; I have none of these.
Hmmm... aren't I special?!?
So we're going to wait and see if the results are repeatable. My doctor and I both agree (I'm a numbers person by trade) that a single observation does not a trend make. So we'll be watching it to see if it persists. In the meantime I'm trading my dark soda habit for clear soda (& more water, if that's possible).
If my PTH levels remain high? Then I guess we start looking at drugs: a Vitamin D analog (I'm already on a "normal" Vitamin D supplement) or a phosphate binder. There's another drug - Cinacalcet - but it's generally only given to people on dialysis.
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