Drugged.

So it’s come to this: 25mg Eplerenone once a day, and for the time being, no potassium pills. I started on 12.5mg and could tell that that wasn’t enough – this time around, I’m getting a bilateral trapezius muscle spasm, cramps in my feet and legs, and some digestive symptoms when the potassium drops too low. “Too low” for me means below 4.0 – it does not mean “below the lab reference range” which for most labs I’ve encountered is 3.6-5.2. My sweet spot seems to be 4.5-4.8, and keeping it there is a bit of a challenge. When I sensed that it was dropping, my doctor had me up the Eplerenone dose to 25mg – still considered sub-therapeutic for most, but then based on size alone, “most” are not me.

I’ve been on 25mg for 6 days now. The low potassium symptoms have mostly gone away. The first 4 days I had a lot of stomach upset, the 4th day I felt like I was having an out-of-body experience all day – I was sooooooo spacey! Yesterday, the 5th day, I woke up feeling clear-headed and without any muscle cramps, but still had some stomach trouble. Today – so far I’m feeling pretty much like myself all around. Here’s hoping it lasts.

As for hard numbers – we’re not sure at this point why I have this pattern, but my BP is staying in the mid-130s/high-80s range during the day, then daily, as predictable as clockwork, drops to 120s/70s-low-80s after the sun goes down. I’m not checking potassium again until the 20th, unless my symptoms signify a drop – I’m really trying to see if I can rely on “listening to my body” for this rather than weekly or twice-weekly blood draws. I think I’ve lived with this beast long enough that I can sense when it’s approaching, and surprisingly, my doctor is on board with this experiment.

And as for my doctor – for now I’m letting my primary care doctor manage this. As mentioned before, I have little confidence in the endocrinologist’s familiarity with this disease. Not to mention I hate going to his office (grouchy staff, crowded waiting room, expensive parking, a downer all around). And there’s the fact that I just can’t afford him. He bills my insurance company $650 for ten minutes of his time, of which I’m on the line for $150 each visit. I’m not a rich person and this isn’t a designer disease; I need to find a not-rich-person’s way to manage it.

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.

 

Return of the giant pills.

My most recent labs showed a drop in potassium down to 3.8, so, as of this afternoon I’m back on the giant pills.

Image

At this point I still don’t have a definitive diagnosis… but at this point I’m not sure I care. Aldosterone is high and potassium is low; I only have one remaining adrenal gland, so really, how much more do I need to know other than “get used to taking lots of pills”?

I’m in the process of being referred to yet another specialist at UCLA. I suppose it will be worthwhile to learn if it’s another tumor, or if it’s hyperplasia, but as far as I know there’s no treatment other than drugs for either.

And as much as I hate drugs, I hate the headaches and the muscle spasms even more. And I hate the dangerously low potassium drops that used to land me in the ER. So really – let’s just get on with it and treat this damned thing.

Labs, the short version.

Got my results over the phone yesterday so I don’t have actual numbers, just conclusions:

  • Negative for pheochromacytoma
  • Negative for hyperparathyroidism
  • Slightly elevated aldosterone
  • Slightly decreased potassium

The plan is to re-test in a month or two, depending on the severity of my symptoms. Could be a tumor or hyperplasia in the other adrenal. Could be something else. Could be related to the Vitamin D disaster, although my nephrologist doesn’t think I took enough of it or took it long enough to matter.

So, while I’m relieved it’s not the first one, I’m slightly bummed it wasn’t the second, since that might have been a quick fix. I’m in no hurry to get back on the adrenal tumor train again, considering the treatment options aren’t exactly ones that agree with me. And I’m not naive enough to really believe this will pass, although I suppose anything is possible.

What I’m dealing with, plain and simple, is “it’s not fair.” It’s not fair to be an otherwise healthy person who gets an adrenal tumor in the first place, let alone gets a second one. While I knew full well it was a possibility that the adrenalectomy would not amount to a get-out-of-jail-free card, everyone on my medical team thought the chance of it reoccurring was miniscule, given my history and my otherwise healthy status.

For now, it’s wait and see.

What not to say (a reminder).

Look, I know you mean well. But you know what the absolute worst thing to say is when someone tells you the medical situation they are dealing with?

“It’s going to be okay.”

The fact that she is having something checked out in the first place already means it is most certainly NOT OKAY. What it is going to be is, simply, what it is, but it is anything but okay.

I’ve been a Sōtō Zen practitioner for a good chunk of time. In this tradition, first and foremost, we do not do denial. We face things as they are, be it good, bad, or ugly, and we do our best to understand that nothing is all one thing or another. There is no black or white; it is all shades of grey*. And that’s okay; and we fail, sometimes miserably, sometimes daily. And that’s okay too.

But please. Don’t tell me that what I am facing is going to be okay. It’s going to be a tumor, or it’s going to be a lifelong medical condition, or it’s going to be something completely different that the universe has not yet revealed to me. It is not – I repeat, not – going to magically disappear. And that, frankly, would be the only possible “okay” outcome. Which is not gonna happen. No. Not a chance.

However – it’s going to be dealt with to the best of my ability, and to the best of the abilities of my collective medical team. And while all of that, in and of itself, is “okay,” what it will be will be challenging and potentially messy and fraught with anxiety and frustration; all of which I am certain will, over time, prove to contain a few blessings amid a whole hell of a lot of prickly thorns.

But let’s be honest here:

It will not “be okay.”

Okay? Okay. Thanks.

(I’ve addressed this previously here, as well as a few other cliches that just really don’t help anybody. But this week, the winner by far is “it’s going to be okay.”)

*Which, coincidentally or maybe not so, happens to be my favorite color.