Oh hi… I’m a bit late, nothing unusual there. It’s been three years since my adrenalectomy – two fairly uneventful, and this one a bit of a bumpy ride. Here’s a bit of a recap.
Earlier this year, beginning with a well-intended course of vitamin D supplementation, I began to notice a return of some very PA-like symptoms: low potassium, high blood pressure, headaches, that horrible trapezius spasm, and so forth. After discontinuing the D, things got better, then worse again. BP kept jumping all over the place and K+ kept declining, so I began supplementing 40 mEQ K+ per day. BP leveled out but K was still low (and producing symptoms) so I started to undergo testing for hyperaldosteronism AGAIN. My labs got messed up and testing was inconclusive, so my doctor agreed to skip straight to prescribing eplerenone since that would be the end result of positive testing anyway.
EXCEPT. Eplerenone, like just about every other BP med I’ve ever taken, RAISED my BP. I stuck with it for 6 weeks or so but my K+ kept plummeting so I went back to the 40 mEq K+. BP was often normal (under 140/90 is the cutoff for us mono-adrenals; I was low 130s/80s) but every now and then would spike and K would drop again.
A suggestion on the Yahoo group led me to think about carbohydrate loading in my diet. As I have a long history of watching carbs, combined with intolerances to wheat, dairy, and sugar, my intake of carbs had increased this year – having spent the first three months sick and on antibiotics, there were times that I wasn’t eating much more than rice. And in an effort to eat more dietary K+, I was eating a lot more starchy veggies, potatoes, and legumes. I was, for the better part of the summer, mostly vegetarian – which means far more carbs than usual. DING DING DING DING DING!!! Fire alarms went off.
I turned to Doctor Google to look for anything connecting “carbohydrates” and “potassium.” BINGO: hypokalemic periodic paralysis (PDF). It was, as the saying goes, deja vu all over again: not since the time Doctor Google had diagnosed me with an adrenal tumor had I seen such a perfect, concise description of a condition that covered every last one of my symptoms, from weird K shifts to paradoxical reactions to meds.
That was a month ago. I immediately banished the rice and starchy stuffs from my diet and changed absolutely NOTHING else. My last serum K+, taken the week before, had been 3.8, which was pretty much where it struggled to stay all summer long. After a month off rice and starches, and no other changes, my serum K+ taken yesterday was 4.3.
This does not prove that I have HKPP, which has not been ruled out. If I do have it, it’s an atypical presentation – but then so was my PA in some ways, so that’s no surprise to me. To get a definite diagnosis, I would need genetic testing, which I have access to but not funds for ($6200, people, no insurance help whatsoever). And while I’d like a definite diagnosis, just to know what kind of dragon I’m trying to slay here, to make a long story short, the treatment is to do exactly what I’m doing now: watch carbs and salt, take K supplements, and take more when an episode occurs.
That being said, it seems kinda dumb to spend six grand only to be told “good job, just keep on keepin’ on.” I’ve got a few more tests lined up before the end of the year and maybe, just maybe, those can be used to build a case for insurance to cover the genetic testing, but I’m not getting my hopes up.
I am, though, hopeful that while I may not have all of the answers, I am at least on track toward a solution. I have a new doctor on board and of every doctor I’ve seen this year, something he said has helped more than all of the rest combined. He told me he now knows three mono-adrenals – me, an ex-girlfriend, and another patient – and not a single one of us was problem-free after adrenalectomy.
Framed that way, I’m able to deal with this thing a lot better than I was earlier this year. I think I had unknowingly fallen into the mindset of “tumor out? problem solved!” without actually considering that perhaps the tumor, and my low K+ symptoms, while interconnected, could be separate issues. I think my first diagnosis of low K+ was in my late teens, which would be consistent with HKPP. Of course, the advice was “eat a banana” and it was never looked into until the tumor’s effects landed me in the hospital in my early 40s. Instead of feeling sorry for myself and wallowing in “OH NOES! MY ADRENALECTOMY FAILED!” self-flagellation, I’m slowly coming around to just accepting the fact that for the rest of my life, the rules will be different for me than for most people. There are still many unknowns, and the unknowns are pretty hard to live with, but ya know – living with the unknowns beats the hell out of not living at all.
So hey, I’ll take it.