I’m a good-news-first kind of person, so I’ll just come out with it – pheochromacytoma has been ruled out. That noise you just heard was me breathing a big sigh of relief.
So, the bad news. After stopping meds and re-testing, my aldosterone levels were abnormally high and my plasma renin activity was abnormally low. This is consistent with primary aldosteronism, which is what the specialist first suspected.
First step is going to be a CT scan. Not a huge deal, been there, done that. Depending on what, if anything, that finds, I may be in for some slightly more unpleasant testing. Not going to think about that too much right now, but the two that scare me are the saline suppression test, which is probably going to make me pretty sick for three or four days, and the adrenal vein sampling. That last one? Let’s just say that for someone who does not like to rely on others for anything, it sounds like hell.
What does it all mean? In lay terms, a screwed-up adrenal gland (or glands). I’m back to looking at the three possibilities mentioned before: medication for life if both adrenals are affected; removal of a benign tumor (taking one adrenal gland with it) and getting on with my life sans medication; or – very, very, extremely unlikely, but in the realm of possibility – a cancerous adrenal tumor.
It also means that I’ve had it for over 9 years, and until I changed doctors last year, nobody even thought for a moment to check things out, writing off my unexplained hypertension as a “typical stressed-out woman problem” – true story, the last doctor – the one I fired – actually said that.
So yeah, I’m equal parts pissed off, and freaked out.
ETA: there’s a blog out there – one single, solitary blog – detailing one woman’s experience with PA: Diagnosis: Hypoaldosteronism. If I find others, I’ll start a links page.
ETA again: wait wait, there appear to be two PA blogs! Hyperaldo Too.