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.

Aldosterone suppression test – the aftermath.

I thought I’d escaped from the aldosterone suppression test entirely unscathed, but I may have spoken too soon. Still, this is no big deal, but I thought I’d put this out there in the interest of fully documenting everything.

A couple days ago I woke up with a bright red spot in my left eye. Apparently it’s a subconjunctival hemorrhage, likely caused by the elevated blood pressure during last week’s testing. If it doesn’t go away, or if another one shows up in the other eye – well, then I get to worry. For now, it’s “wait and see.”

Perhaps more annoying is the 4 pounds I gained as a result of the sodium ingestion that are just not going away. When you’re as vertically challenged as I am, that’s practically an entire clothing size.

Needless to say, I’m more uncomfortable now that I was during the three days of sodium loading. But hey, it could have been worse, so I can’t complain. At least not too much.

Subconjunctival hemorrhage

No surprises here.

My doctor just called with the results of last week’s aldosterone suppression test. I’m not going to go into numbers until I have a hard copy in front of me, but here’s the condensed version.

My aldosterone levels, both plasma and urine, were off the charts high. This is what was expected, and confirms that I have PA. The only unusual thing that turned up was that I did not excrete as much sodium as is typical, but that’s probably because I don’t eat the standard American processed food diet and avoid sodium like it’s the devil. And that probably accounts for the extra two pounds I’ve been carrying around since last week, grumble grumble.

So – there are two schools of thought as to what my next step will be: adrenal vein sampling (AVS), or surgery? My doctor thinks it would be safe for me to skip adrenal vein sampling entirely and just have the left adrenal taken out. Me, I’m not so sure; I feel like I’ve had this undiagnosed for so long that I would like to be good and certain that the problem is only unilateral before taking that step.

From what I hear, the AVS is trickier than the actual surgery, but I’ll be getting it done by the head of interventional radiology at UCLA, so I’m pretty confident that risks will be minimal. The biggest downside? Results are often inaccurate or inconclusive, as the right adrenal is difficult to catheterize. And, my tumor is on the left adrenal. Which means that even after doing AVS, there’s still a possibility that the right adrenal could also be affected. So it’s in the realm of possibility that I could have the surgery and still have problems and still get stuck on meds for the rest of my life.

But you know – and these are words that have become my motto as of lately – that’s a chance I’m willing to take. I’d rather go into this knowing that I did everything possible to confirm the diagnosis before I undergo surgery.

~ ~ ~

For those curious about AVS – this article seems to be the place to start. It’s a bit of a how-to manual but gives a pretty clear description of what to expect.

Aldosterone suppression test, day three.

Today started with a blood draw, bright and early. The phlebotomist asked me what I was doing with the rest of my day. I’ll bet he didn’t expect my answer would be, “Staying home and peeing in a bottle!” but hey, I speak the truth. We both had a good laugh about that one.

When I got back from the lab, I measured my blood pressure and it was 165/125. For reference, that second number? Shouldn’t really ever be higher than 80. Mine’s usually in the high 80s, low 90s at most, but that’s because of the PA. For a brief moment I panicked and almost called 911, since a diastolic reading of over 110 is considered hypertensive crisis and holy crap 125?! Then I thought I should check it again: 165/100. Which is ballpark for where it’s been throughout the past three days, and where it should be while taking the sodium. Then just to be certain, a few minutes later, 155/95. Whew. Crisis averted.

Second moment of panic came while I was on the phone dealing with an insurance issue. My network of friends checking up on me called, and I didn’t know how to use the call waiting. (Yes, I’m an old fart who doesn’t really know how to use her smartphone! In fact, I thought I had call waiting disabled. Oops.) When I hung up I had a couple of panicked texts and voice mails and – I felt kinda dumb about the whole thing. But I suppose it was a good test of the emergency support system – at least we know it works!

Anyway, I’ve got one more dose of the NaCl, then tomorrow morning I get to pee in the bottle one last time, and then drop my little offering at the lab, and I’m done. And as long as nobody at the lab screws up*, I don’t have to do it again.

So now that all is said and done? The scary stuff out there about the risks of this test, including potassium dropping too low and stopping the heart, or stroke or aneurysm due to the elevation in blood pressure from the sodium, seem to me to be a bit exaggerated. I think I got lucky on this one – since my “normal” blood pressure, unmedicated, is on the low end of high, the sodium didn’t cause too much of an increase. The other expected side effects – nausea, headache – were only during the first day, and were really minimal. This test seems to have a really bad reputation, but all in all it was pretty unremarkable.

*This morning I had to tell the phlebotomist how to correctly do the blood draw for renin, although there seems to be several schools of thought contradicting each other on this one.

Aldosterone suppression test, day two.

So far, so good. Today’s job was to take 2mg NaCl three times – the first two are already a done deal. The side effects have been absolutely minimal – a little bit of nausea about an hour after taking it. I did wake up at 3am with a crazy bad headache, but fortunately it’s okay to take super double extra strength aspirin/caffeine/acetaminophen cocktails during this test – I popped one of those and went back to sleep and woke up magically headache-free. The worst thing so far is that my potassium dropped to 3.2, so I’m taking extra doses of the giant pills.

Tomorrow: more blood-letting, and, whee, big fun – it’s the day I get to pee in a jug all day. Then Thursday I take that in to the lab, submit myself to even more blood-letting, and then I’m on my merry way, unless tomorrow’s labs show even lower potassium, in which case I may end up being subjected to potassium infusion. Um, let’s hope not, okay?

I consider myself really, really lucky that I’m almost 2/3 done with this thing and – fingers crossed – nothing scary-bad has happened. There’s a bit of negative information out there about the risks of this test, and while I’m sure the risks are all very real, I almost think Dr. Google had me unnecessarily worried.

Also? I consider myself really, really lucky that I’ve got a nice little group of friends looking out for me right now. You know who you are. Thank you.

Aldosterone suppression test, day one.

Today’s routine: early morning blood draw, 2mg of sodium chloride 3x/day. So far, so good – I took the first dose at 7am and felt fine, although I got a couple of blood pressure readings that bordered on the lowest end of what my doctor described as dangerous. I fully expected it to go into the “dangerous” zone after I took the second dose this afternoon, but – nothing. It actually went down a bit. About an hour after the second dose I got pretty nauseated, but it was over with pretty quickly.

I’m feeling a bit optimistic that this is going to go well. One day (almost) down, two to go…

Let the fun begin.

So. After a blissful week on Oahu, it’s back to reality. For my next act, I will be having an aldosterone suppression test, also referred to as oral salt loading test. Apparently there are no infusion centers affiliated with UCLA that will do the quicker, less scary in-office saline suppression test, so lucky me, I’m on my own for this one. Here’s how it’s supposed to go.

  • Day one (this coming Monday, for those of you who are keeping track): go to the lab to get a BMP drawn, take 2 1-gram NaCl pills every three hours. If my potassium comes back too low when the BMP results are in, the whole thing has to stop until another time when my potassium is higher.
  • Day two: Take 2 1-gram NaCl pills every three hours. This should be the easy day, but chances are by now, I will be feeling pretty crappy from all that NaCl.
  • Day three: Blood draw for BMP, PRA, and plasma aldosterone. Take 2 1-gram NaCl pills every three hours. And – here’s the fun part – after that blood draw, I pretty much can’t leave my house all day because I have to pee in a gallon jug for 24 hours! And keep it in my refrigerator! Actually, I have THREE gallon jugs, just in case. Yeah, you read that right – I just told the interwebs that I’m a frequent pisser. It turns out that it’s part of the condition – people with PA have to pee all the time. And here I just thought I had a teensy bladder.
  • Day 4: Pee into the gallon jug one last time, then drop it off at the lab.

This whole routine is mostly being done to please my insurance company. In a normal person, the labs that are run after this will come back with incredibly low aldosterone levels. In a person with PA, those levels will be incredibly high. (Duh – they are already incredibly high!) For this reason, I’m especially resentful of the fact that I have to do this, but whatever – I’m sure I will be in for far more unpleasant stuff in the near future.

Some people can do this and feel just fine. Others will retain water, which will lead to all sorts of icky things like headaches, bloating, nausea, elevated blood pressure, heart palpitations, and so forth. I already know that I’ll fall into that latter group – I can barely eat restaurant food without getting those symptoms thanks to all the salt most restaurants use. Sometimes blood pressure will rise high enough to warrant a trip to the ER. Here’s hoping that won’t be me.

While all of this is going on, I’ll be off work for three days. I intend to use that time productively to write three letters to my past general practitioners who missed all of the symptoms of PA that I presented with. I’m looking at you, Dr. Christine Oman of Arcadia, CA; Dr. Karen Kim of Good Samaritan, Los Angeles, CA; and Dr. Brent Michael of Santa Monica, CA.