Comedy of Errors.

So this morning? I showed up at the endocrinologist’s office to find out my results from the sodium loading.

And… wait for it…

There aren’t any.

Somebody at UCLA’s Santa Monica Clinical Lab effed up, big time, with my 24 hour urine sample. They checked the metanephrines, of course (which were negative, of course), but…

THEY NEGLECTED TO CHECK THE ALDOSTERONE.

Yes, you read that right.

***bangs head against wall***

The endo wanted me to repeat the test. I told him, HELL NO – It’s been over a week since I completed it and I STILL have a horrendous headache and elevated BP and probably the worst trapezius muscle spasm I’ve had since… ever, really.

I am done. DONE with the testing and the clueless doctors and with being medically interesting. Enough already. As I’ve said for years – my body, my science experiment – and even if it kills me, I am determined to be in charge from here on out.

There are two options, really. It’s simple. First get my potassium back under control (feeding me giant doses of salt pills will do the exact opposite) and hope that takes care of the BP once again. If it does – problem solved. I have hypokalemia – easy peasy, there’s my diagnosis. If that fails, I start taking the dreaded eplerenone. If that works – easy peasy, I have a hypertension diagnosis on my record and nothing more.

And if neither of those solve the problem, then maybe I’ll be willing to revisit this testing stuff. But at this point, I’m ready to just let the damned disease have its way with me, even if it kills me.

Because really, I think the medical establishment’s incompetence is more likely to kill me than anything.

A week in the life.

Now let’s see… where were we? It’s been a hell of a week, but it wasn’t all bad – there was a 10+ mile hike on a very hot 4th of July in there that made me feel like I couldn’t possibly be all that sick. But that was the high point. I’ll take it!

My nephrologist essentially “fired” me, which you may recall he tried to do once before. While I respect him for being upfront and telling me that he thinks my case is beyond his expertise, the alternative he proposes – travel to Mayo Clinic for treatment by experts – has no basis in reality. At least not my reality, which is a reality of not having a lot of spending cash for things like plane tickets and cat sitters and airport parking and, oh, minor detail – doctors outside of my insurance network. So that’s not going to happen, although I am considering the NIH option.

This leaves me at the mercy of the rather arrogant endocrinologist. My primary care doc has had words with him, and has told me to try to not be so “intimidating” the next time I meet with the endo. Ummm… I’m all of five feet two inches tall and weigh less than the average American 12 year old*; how intimidating can I possibly be?! Oh, right. In other words, don’t be so intelligent. Because smart women are SCARY!

So this means I’m going through with the sodium loading test the endo ordered next week. Been there, done that; it’s no picnic but it does give me an excuse for a couple days off work so hey, I’ll look on the bright side. And the results might be interesting, or at the very least, useful. I just wish the process wasn’t so heinous – I have to ingest 6000mg of sodium tablets for three days, the third day of which I have to pee into a bottle full of acid all day. Good times. Or, you wish you were me.

*True story, that. If you want to read about the “average” American child’s weight, here’s a fascinating – and depressing – PDF.

Hyperaldosteronism – a refresher course.

Figured this would be useful both to my friends reading this, to remind them of what I am dealing with, and for those who find their way here in search of information: What are the signs and symptoms of hyperaldosteronism?

The short list, copied from the link above. I’ve bolded the signs and symptoms that I am dealing with at present:

Signs:
High blood pressure
Low blood potassium
Low blood acid

Symptoms:
Headache
Vision problems
Fatigue
Muscle cramps
Muscle weakness
Numbness
Temporary paralysis
Increased urine
Increased thirst

And FWIW, I debated including “temporary paralysis” in my symptoms because I’m not sure if my neck freezing up would fall into this category or not. This isn’t something that happened the last go-round, but it seems to be a permanent visitor this time around. Because of this, I couldn’t turn my head to parallel park the other night, so I had to park a zillion miles away from home. This is the burden of PA in a nutshell: it’s not the end of the world, but damn, it makes life a pain in the ass sometimes!

~ ~ ~

In other news: met with yet another one of the top endos at UCLA yesterday, and he turned out to be just as clueless as the last top UCLA endo I met with. This one told me that there was no way I could be having low potassium symptoms as my potassium measured 3.8 and the lab normal is 3.6-4.7. Ummmmm… who am I going to believe, the guy with the fancy letters after his name, or my own body, that got tested for this stuff weekly to biweekly for nearly a year already?

Yeah. Welcome to my new reality.