As of today I’ve been on 12.5 mg spironolactone per day for a week. And… paradoxically, the biggest change seems to be that my blood pressure is higher than ever. Saw the nephrologist this morning and he thinks this is okay. I’m not so sure.
The nephrologist ordered some bloodwork, and based on my potassium, he thinks the spiro is doing it’s thing, but not enough. My potassium came back at 3.9. Considering that he had me cut back the supplements, and I know that missing even one of those can drop me into the low 2’s, I’ll take this as evidence that he’s correct in saying the spiro is working, as it is supposed to normalize potassium nearly immediately.
That’s the good news. The bad news? Starting tomorrow I have to up the dose to 25 mg/day. That was the dose that I was taking long ago, that gave me the terrible side effects. I’m still willing to believe that being 10 years older might make a difference – even without an endocrine disease, I think the hormones of a 46 year old woman are probably quite different than that of a 36 year old. Still, I’m not happy about the higher dose. And I’m a bit worried about the path that I am on in general.
There’s a woman around my age, with nearly identical symptoms, at the Yahoo Hyperaldosteronism support board who has opted for meds instead of surgery, for reasons I can’t recall. While she appears to be doing everything right – taking the drugs, watching the sodium intake, upping the potassium intake – she ended up in the ER last week. Her endocrinologist has “given up” on her and pretty much done the same thing my nephrologist wanted to do – referred her to a specialist away from home.It sounds like she has the resources to deal with this, but like me, is concerned about little things like, oh, you know, losing her job.
This brings up a medical issue that nobody ever talks about, but it seems like it’s not all that uncommon: what happens to those of us who have all of our local experts absolutely stumped? Particularly those of us who do not have bottomless resources and wide-open time for travel? Our healthcare is tied to our job, our job is tied to our ability to be there… But then something like this happens. What next?
It will be interesting to see how this turns out for both of us.