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.

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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.

The question of meds vs. surgery.

The general sentiment at the Yahoo Hyperaldosteronism support board is that one should opt for meds and dietary changes to treat PA, rather than surgery, and that surgery should be done only as a last resort. This is in direct contrast with my medical team’s advice – for me, the consensus was that my symptoms were so clear-cut that I could have skipped the AVS and gone straight to surgery. Due to my age and the length of time that I’ve known I’ve had this condition – at least 15 years, possibly longer – I didn’t think that was wise. But I still want that surgery, if I am qualified for it.

There are a few of us at the Yahoo group who are bucking the general sentiment. I am one of them, and am extremely vocal about it. Another member of the group feels the same, and since she is a bit younger than I am, she is planning to proceed directly to surgery. Here are some of the concerns she brought up in a post today.

  • I have found absolutely no evidence that a lifetime of meds and diet control is advantageous over the surgical procedure in my specific situation. However well the meds and diet work in reducing my blood pressure, it’s not addressing the fundamental issue which is that my hormones are way out of whack.
  • What else is all that excess aldosterone doing? I get the impression that nobody seems to really know what else these hormones actually do.
  • While I can eat healthily at home, I can’t control all my food for the rest of my life – no holidays, no eating out – it just ain’t going to happen.
  • Yes, there’s a risk – I could be left with only one adrenal gland that is not working as it should. But the probability of that happening is low. And yes, in a few years I could have high bp again. But then I’d be on drugs for life – which is where I am now. What’s to lose?

I’ve already been on spironolactone, which is the first-line drug of choice in PA. It’s a horrible drug. It has anti-androgenic and pro-estrogenic effects. If you are male, this means, frankly, it will make you grow man-boobs. If, like myself, you are a woman with fibrocystic breast tissue, it means this tissue will grow even more abnormally, causing excruciating pain. And if, like myself, you are a woman of a certain age and are already estrogen-dominant, it means it will further push your sex hormone levels out of whack, resulting in menstrual irregularities.

The other drug that works in PA is eplerenone. It is expensive, and many insurance companies will not cover it. I haven’t tried it yet, and am hoping that I never will need to. I’ve heard from a few people who have taken it with no side effects, but the known side effects do not sound like a walk in the park. Not to mention I have heard considerable anecdotal evidence of it causing depression.

Another drug sometimes prescribed for PA is amiloride, which I’ve been told rarely works well.

Regardless of the drug, my concerns are with the issue of quality of life. Most medical studies – as well as many doctors – rarely address this. Here’s one study that touches on it briefly: both surgery and (again to a possibly lesser degree) spironolactone and/or amiloride treatment are associated with improved quality of life. If surgery = greater quality of life, then hey, let’s try it.

As for dietary measures, eliminating sodium from the diet can help reduce symptoms. While I know this works, I know that it’s not sustainable. Since the beginning of my diagnosis last December, I’ve tried to do this whenever possible. It means I can’t go out to restaurants, ever, since they can’t be trusted to eliminate all added sodium from my foods. It means I have to make everything myself, which is no big deal outside of the social aspects of not eating anybody else’s cooking. And it means that food becomes incredibly, intolerably boring – it’s not that I like salty food, I don’t and never have – but eliminating salt means eliminating most of my favorite cuisines, which use shoyu or fish sauce rather than salt for flavoring. If there was a way to come up with sodium-free Thai or Hawaiian or Japanese that still tasted like the real deal, this would be doable for me.

As for what else all that excess aldosterone is doing – nobody knows, and we are all different. Same goes for the lack of renin. For me, the end result of all of this is poor blood sugar control, the world’s most unpredictable menstrual cycle, way too many headaches, and vision difficulties. Covering all of this up with drugs doesn’t seem wise to me if removing the cause of it in the first place is an option.

And last, as for what’s to lose – my main concern here is the risks of surgery itself. But if my recent AVS experience is any indication of the quality of care I will receive, I’m hardly worried at all.