Drugs, one week later.

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.

Because I don’t do denial.

Back from today’s nephrologist visit, with a slight detour from yesterday’s plans.

I spent a somewhat sleepless night pondering the following: if I repeat the AVS and it successfully shows that the RIGHT adrenal, the one WITHOUT the tumor, is bad, but the LEFT adrenal – the one with the tumor – is okay for now, would I really go through with surgery that would leave me with one adrenal gland and a tumor still in my body?

Tough question, isn’t it. I’ve said it before and I’ve said it again – I’ve had a sort of 6th-sense feeling from the start that my disease was bilateral. Even with the not-quite-successful AVS,  at present I know that the RIGHT adrenal was very likely successfully cannulated, and that it is bad. I also know that the left has a tumor. And I also know that up to 50% of PA cases are bilateral.

I’m not so sure that I want to go through the AVS procedure again only to be told “Sorry kid, there’s nothing we can do for you but prescribe meds,” when I can be told that, RIGHT HERE, RIGHT NOW, without another set of hospital bills coming my way.

So here’s what I’m doing. I’m taking the meds. I’m doing this in a very systematic way. Today I started on spironolactone, which I have taken once before and I consider it the devil. I know that if I don’t do this and prove that I can’t take it, my insurance company will not pay for eplerenone, the only other medical option. So I’m getting this out of the way first.

Why do I consider it the devil? It has a pretty ugly set of side effects. It affects estrogen reception. For some people, this means it causes breast enlargement, breast pain, and menstrual disturbances. When I took it, I was one of those people, and it was pretty awful, and I fully expect to be one of those people again. But I’m willing to give it a try because you know, I’m older and maybe my body chemistry has changed somehow and it won’t be so bad. Yeah, I know, I’m crazy. What can I say.

Essentially I am proceeding as if I knew, with full certainty, that my disease is bilateral. I don’t know this. But I do know that there is a 50% chance that it is, and I do know that I have a malfunctioning right adrenal gland. Knowing those things, I feel as if doing the AVS over again would just give me false hope once again, and the outcome would be exactly the same: Sorry kid, there’s nothing we can do for you but prescribe meds.

And so my next adventure begins: finding out how awful, really,  living with this for the rest of my life is going to be.

Sorting it out.

I have a plan. Thanks to some wonderful friends, both in real life and in the online support forum space, and liberal amounts of coffee, I think I’ve sorted out what needs to happen.

  • Repeat the AVS at UCLA.
  • If bilateral, end of story: I try the meds. I already know that in that case, that is my only option.
  • If inconclusive again, end of story: I try the meds. I will at least know that I have done my best to get myself treated locally.
  • If I can’t tolerate the meds (but AVS was again inconclusive), I will find a way to get myself to the Mayo Clinic in Rochester, MN.

It’s not all that complicated, really. It’s just a matter of getting the AVS ordered again, and getting the insurance to cover it. My mission today: to get my primary care doctor on board with this plan so that he can fight the fight for me. Because really, I think that should be part of the reason I’m paying him.

Two choices.

My nephrologist called me this afternoon.

The AVS was done incorrectly. Based on the lab values listed for my left adrenal – the one with the tumor – he is convinced that the interventional radiologist was in my hepatic vein, rather than my adrenal vein.

His recommendation? Travel to Mayo Clinic or NIH to have it re-done.

I explained to him that travel was not an option for me, and asked why I can’t just have it re-done at UCLA. His response was that they messed it up the first time, so why would I want that?

Going into it, I knew there was only a 65% success rate on the first try. I was fully prepared to have to do it again, and still am.

The conversation took a turn toward drugs at that point. I’m pretty against the whole idea.

Assuming that the lab didn’t get right and left samples mixed up – not likely, but possible – since my right adrenal put out so much aldo during the test, chances are my left (the one with the tumor) did too and it’s bilateral, which leaves only meds as an option anyway. So he’s advocating that I cut to the chase and be done with it.

But he admitted that it’s possible that the left *could* have a tumor just sitting there, doing nothing, and be perfectly fine.

The only way to find this out is to repeat the AVS.

I need to know, so I’ll be spending my upcoming days fighting for my insurance company to cover that.

Because really, I only have two choices to work with here: accept a lifetime of medication without question, or get the AVS done again locally. That second option is worth fighting for.

Stay tuned.

Even less.

What I know, that is.

Phonecalls were made to both the endocrinologist and the nephrologist. I’m no more enlightened than I was before.

Here’s the short version: The endo, who has said this before, doesn’t think my tests are indicative of garden-variety primary aldosteronism. But, he doesn’t know what they are indicative of; everything else he has tested has come back negative.

The nephro is convinced that it’s still plain old PA. But, since my tumor is on the LEFT and the tests show the RIGHT is messed up, he doesn’t know what the next step should be.

As for the patient? She is really, really frustrated that the so-called experts can’t even agree with each other.

(Almost) six weeks post-AVS.

And I know NOTHING new really, absolutely nothing. My internist was able to pull the results for two of the three tests the endo ordered (two weeks ago) and they were negative, which was good news but not surprising.

So. Six weeks without the nephrologist calling, two weeks without the endocrinologist calling. I’m a little frustrated. I think tomorrow I’ll be making some phone calls.

~ ~ ~

A couple months ago, I felt so close to having not just some answers but and actual solution. Now I feel like I have nothing, really, other than the knowledge that for at least the last 10 years my body has been malfunctioning and my health care has been grossly mismanaged. And I found that out almost six months ago. So for the last six months, I’ve been walking around with a known but untreated condition.

Yes, I know it could be a lot worse. But what the doctors don’t realize is that it’s bad enough. Some days, the symptoms all add up to one big mess of awfulness: headaches that affect my vision, palpitations, digestive stuff, giant muscle spasms, dizziness. And there’s nothing being done about it. And when those symptoms all come crashing down at once, it’s not like I have the option of checking out and taking it easy. It’s just me around here – there’s nobody else to earn a living and take care of things. And sometimes, it’s overwhelming.

People have a hard time understanding this because I don’t “look sick.” I’m not a complainer and I’ve never been very good at not feeling well – generally I just push myself through it, because damn it, life’s too short to waste resting on a couch or taking a nap. I have places to go and things to do! And sometimes, a body that just won’t cooperate with the mind.

It’s not as if I want to be treated differently because of my illness, not really. I do want people to respect certain things – that I can’t eat out without becoming sicker, for one, and that their “cold” will likely land me in the hospital with a potassium-dropping fever, so please don’t come near me if you’ve got one – and I don’t think that’s asking too much. But yet a day hardly passes that I don’t have to practically beg forgiveness for not participating in something food-related, or be an absolute asshole about somebody’s cold. And it’s usually the person I’m interacting with who acts offended, when I’m the one who has every right to be.

I guess what I’m trying to say is that there’s a whole psychological side to dealing with illness – this one, probably any one – that is completely and totally overlooked by both doctors and society in general. I’m barely able to put that into words, let alone sort out how to deal with it. So I’ll put it this way: think of how truly suckworthy a garden-variety bad day can be when you’re just in a funk for some reason. Then add to that a bunch of physical pain, and powerlessness to do anything about it. And throw in a lot of fear.

Yeah. That’s pretty much how it feels a good part of the time.

The endocrinologist visit.

As expected, the endocrinologist visit was interesting. The endo had a slightly more complete set of AVS results than my primary care doc had, which showed that my RIGHT adrenal was producing excessive aldosterone and cortisol. The tumor is on the LEFT. He also doesn’t think that the AVS results are typical of primary aldosteronism – while the hyperaldosteronism is there, he suspects there may be something else going on also.

That mention of hypercortisolism from yesterday? All these years later, the endo still wants to test for that, so I will be doing a dexamethasone suppression test. Tonight at midnight I have to take a dose of dexamethasone, which is a steroid (I’m not really happy about this), and tomorrow morning I have to go in for bloodwork. He’s also doing blood tests for DHEA-sulfate and free testosterone. In lay terms – in addition to checking out my adrenals, my pituitary is now under scrutiny.

And then there’s my liver. That hepatic hemangioma – when the endo looked at my CT results he started to say “that’s nothing to worry about” but then when he saw the size of it, he backpedaled a bit and said he’ll want to look into that more further down the line.

So… nothing has been determined about what I will be doing with the rest of my life. And while this is so frustrating that I don’t have words to express how it feels, I am feeling pretty fortunate that I didn’t proceed with my nephrologist’s advice to skip the AVS and proceed directly to adrenalectomy.

Because that left adrenal adenoma? It’s starting to seem like it’s just sitting there, doing nothing.