Failed.

After a potassium crash, my doctor increased the eplerenone to 25mg twice a day. Guess what? My blood pressure went HIGHER.

So now we’re doing an experiment: no eplerenone, potassium 20 MEQ twice a day, see what happens.

This just doesn’t seem to get any easier. It’s tiresome. Really, really tiresome.

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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.

Moderation: just another word for “denial.”

In my last post, I briefly touched on the relationship between PA and insulin resistance – in short, that it can be caused by the potassium depletion from the PA. I’ve been thinking about this quite a bit lately – what it meant for me during the 10 years that I had untreated PA, what familial link there may be, and on a larger scale, where it might fit in to the nation’s diabetes epidemic.

In January 2003, when I was at my sickest (and my highest weight, a whopping 173 pounds), I was diagnosed with two of the three: insulin resistance and metabolic syndrome. With a strong maternal family history of diabetes and heart disease, this would have been enough to scare me into action, but I was lucky: I was also diagnosed with fructose intolerance at the same time. The end result of following a diet for fructose restriction was essentially a low-carbohydrate diet – no sugars, no grains, no fruits – which enabled me to lose 50 pounds in less than three months. I’m pretty certain that this saved my life – at the very least, it reversed many of the symptoms of metabolic syndrome – and thus, I am a big believer in carbohydrate restriction as a preferable treatment (over drugs) for insulin resistance.

My mother, age 86, is the middle child of seven siblings, and is the only surviving one except for the youngest. Of the five who have died, four of them have died from diabetic complications or heart disease (or a combination of both, as all were diabetic). All were obese. The youngest living sibling is also obese and diabetic. The only two of the seven not to become both obese and T2 diabetic are my mother and the one sister who died young (a suicide).

When one begins the diagnostic process for PA, there are a lot of questions about family history. I don’t have a lot of information, but based on what I was able to put together – mainly, the above paragraph – I came to two conclusions: first, while I have no proof of this and never will, I suspect that every one of the siblings above who died of diabetic complications had an adrenal tumor. And, second, if one becomes diabetic as an adult, the best things one can do are remove all sugar and grains, processed foods, and “eating for entertainment” from one’s diet; and get up off one’s butt and move. I am convinced that I reversed my insulin resistance early on because I refused to remain sick and fat (even if this could not reverse the tumor!), and I am convinced that my mother’s apparent immunity to these diseases is due to her lifelong habit of walking everywhere (she never learned to drive).

~ ~ ~

Even if my adrenalectomy has, at least for the time being, rescued me from the danger zone of developing diabetes, I remain extremely interested in the subject, and I have RSS feeds set up for news items about the disease. So even though I don’t watch television and could care less about celebrity chefs, the recent hubbub about Paula Deen’s diabetes diagnosis came across my radar. And I’m siding with Anthony Bourdain here – she really is the most dangerous woman in America.

Why? Not because she advocates eating bacon cheeseburgers sandwiched between two glazed donuts, but because she advocates moderation (WARNING: link with sound!). Loudly and emphatically. Sorry, Ms. Deen, but I’ve got news for you:

Moderation doesn’t work. And you are living proof of it.

First, moderation goes against human nature. We’re hardwired to survive, and survival, historically speaking, means beating famine. So, when presented with food, we eat. Simple enough.

And, second, as I noted above – when one has metabolic derangement, carbohydrate restriction can work wonders. And that means complete and total restriction of all processed foods, sugars, and grains. That doesn’t mean “once in a while,” that doesn’t mean “have a cheat day,” that doesn’t mean “a little bite won’t kill you.” Because it will. Maybe not today, but slowly and painfully, it will kill you. If you don’t believe me, do a Google image search for diabetic foot (WARNING: disgusting images!).

Moderation, in my opinion, is just another word for denial. The minute one is diagnosed with any form of metabolic derangement, be it insulin resistance, T2 diabetes, or metabolic syndrome, one’s life changes. Or perhaps more accurately, one has to change their life – that is, if one wants to take control of the situation and get healthy again. The choices are simple:

  • Stop “eating for fun” – that means no cupcakes, no ice cream, no fast food, no corporate chain restaurants serving plates of ConAgra with a side of Monsanto – and get up off your butt and move.

OR:

  • Practice “moderation” and expect to be feeling crappy, popping pills, and getting fatter and sicker for the rest of one’s life.

There are only two choices. It’s up to you.

~ ~ ~

If you have been diagnosed with insulin resistance, pre-diabetes, or metabolic syndrome, read this first. It’s a pretty decent overview of what each of the terms mean.

Once you have done that, head over to Blood Sugar 101 and read every word that Jenny has written. Chances are it will contradict everything your endocrinologist tells you. And, unlike what your endocrinologist tells you – moderation, lots of whole grains, and many expensive drugs – it will work and you will feel better. It’s worth a try, isn’t it?

Three months (and a few days) post-adrenalectomy.

A few notes:

  • As of the first of the year, my doctor released me from the no yoga/no lifting/etc. directive and told me to get back to normal life. My pain from whatever I did to the incision site is, once again, almost completely gone. Here’s hoping it stays that way!
  • Blood pressure remains textbook normal. 114/73 today. I’m having labs done on the 25th to check potassium and the other stuff that was really wonky before the surgery – cholesterol, HBA1c, CRP, and C-peptide.
  • I had a haircut appointment yesterday for the first time since the surgery. My hair texture has completely changed and I’ve lost quite a lot of hair (as was evidenced by the previous week’s need to call the plumber to hydrojet my shower – never had to do that before!). I know that hair loss after surgery is really common, but of course this worries me. Mine all seems to have happened in the last month.
  • I’m continuing to lose weight without trying. Down to 111, a low I haven’t seen since the late 1990s. So if someone asked me if PA effects weight – heck, someone did ask me last night – my answer is yes, absolutely. (ETA: a brief dialog with the doc over at the Yahoo hyperaldo board led to my understanding that this is how it works: low potassium causes insulin resistance; once the low potassium is corrected, the insulin resistance goes away. Apparently correcting low potassium via oral supplements, as I did pre-surgery, isn’t always going to achieve the same effect for a number of reasons; mainly, the levels that are monitored – plasma potassium – are not the most accurate reflection of true potassium levels in the body.)
  • Had my first bit of bad news since the surgery. Last week I went to my optometrist for a routine prescription update. He dilated my eyes and noted that I have visible vascular damage. We discussed PA extensively and he understands what I’ve been through, but can’t really comment as to whether or not the damage he noted is reversible, or what, exactly, it means for me long-term. He also saw early signs of macular degeneration, which runs in my family (but usually doesn’t hit until age 70 or so – I’m only 46!). My mother has this, so I’ve always known that there was a good change I would eventually too. But from what I’ve read, uncontrolled hypertension – you know, that thing I had for 10 years while I was waiting for someone to diagnose my tumor – can also be a cause. I’m currently waiting for a referral to the chief of retinal disorders at UCLA to get to the bottom of this, and trying not to freak out. Or get too pissed off at the series of doctors who were unable to diagnose me all those years!

ETA: yeah, it was getting to me so I did a bit of Googling about the hair-loss-after-surgery thing. Apparently I’m right on schedule – the two-to-four month mark seems to be when it happens. A little disappointing since shedding was an annoying affect of the hyperaldo for me, and the surgery seemed to have stopped it. Oh well. It’s hair; it grows. I hope.

http://www.ehow.com/about_5390925_losing-hair-after-surgery.html

http://www.surviving-hairloss.com/post-surgery-sudden-hair-loss.html

http://ask.metafilter.com/137548/Help-save-my-hair

Six weeks post-adrenalectomy. And, thankful.

Happy Thanksgiving! Appropriately enough, I’ve posted a note of thanks, and a condensed version of my story, on my adrenal surgeon’s blog, here.

My adrenalectomy was six weeks ago today. I still have occasional pain on the left side near the largest incision, but aside from that, I just keep feeling better. I blame the pain on the long hours of sitting hunched over a computer in order to earn a paycheck, and am hoping to remedy this by getting a standing desk soon. After all the walking that I did during my time off right after surgery, I am more convinced than ever that sitting all day – what has become the norm in our post-industrial society – is really, really not good for you. The days that I don’t get a long walk in, my blood pressure runs higher – 120s/80s instead of 110s/70s – and that, in and of itself, is proof enough for me: we are meant to get up and MOVE!

The most notable recent change for me has been the sensation of cold. Yes, it’s practically winter in many parts of the world, but here in Southern California it’s not exactly freezing, and I have not been accustomed to feeling especially cold in previous years. But this year? Brrrrrrr. I’ve had to buy a few things like corduroy pants, instead of the dresses and skirts that I prefer to wear, and a “real” coat (instead of a lightweight jacket) because I can’t seem to stay warm when the temps drop even a little. And I’ve become very, very enamored of fleece. When I had the tumor I was always, always running warm, and often running an inexplicable low-grade fever, so this is quite a change and is taking some getting-used-to.

The other post-surgical change that seems to have become a permanent fixture is that my sleep patterns have completely reversed. Prior to the surgery, I had always had night-owl tendencies and rarely went to sleep before 1am. On weekends, if I didn’t have a compelling reason to get up, I would sleep until noon. Maybe later. While I quite enjoy the night-owl part of the equation, I wasn’t thrilled that I was sleeping half my weekend away, but any time I would try to get up earlier I would end up feeling really sleep-deprived. In the days immediately after the surgery, though, my sleep cycle was completely out of control – two hours of sleep followed by three hours awake, with an overwhelming need to nap at 2pm every day. Now that I’m back to work and on a schedule, this has evened out a bit and now looks like this: by 11pm I can hardly stay awake, so I turn in “early” (hey, that’s early for a night-owl!); I sleep through the night and find myself wide awake at 7am, completely without the grumpy, out-of-sorts feeling that the 7am hour brought prior to the surgery. I’m not sure how I feel about this, but on paper it certainly looks normal – hey, isn’t that that eight hours of sleep everyone is always telling us we should have?? I’m enjoying being up and out and about early in the morning on weekends, before everyone else is doing the same thing, but I miss those post-midnight hours and the clear focus and creativity that would come to me at that time. If I could only channel those things into the spare morning hours… Perhaps more coffee would help…

Still. Minor complaints. Not really complaints at all; observations. I remain confident that my decision to have surgery, six weeks ago today, was the right one. For me.

So. Yes, thankful.

Final report from the endocrine surgeon.

This morning was my follow-up with the endocrine surgeon. I got some post-op aldosterone and renin numbers which are normal:

Aldo 1.3 (reference range <31) – before the surgery I think mine was 44
Renin 1.1 (reference range 0.2-1.6) – before the surgery mine was undetectable

And I got a copy of the pathology report:

FINAL DIAGNOSIS:
Adrenal gland with a cortical tumor, 0.7cm

A microscopic exam has been performed. The specimen… consists of a 10-gram,
7.0 x 4.5 x 0.5cm adrenal gland with attached adipose tissue. The adrenal gland
is 5 grams, 4.0 x 2.0 x 0.5cm. On cut surface, there is a 0.7 x 0.7 x 0.7cm
well-circumscribed, golden-yellow nodule, which grossly appears to come from the
cortex of the specimen. No areas of hemorrhage or necrosis are identified within
the nodule. The remainder of the gland has a golden-yellow and dark red cut
surface.

All that to say what we (hoped we) knew all along – it wasn’t cancer. Yeah we knew that, but still – whew.

My surgeon, to echo my primary care doctor and my nephrologist, pronounced me “cured.”

I burst out into tears and gave her a hug.