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.