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.

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.

Six months (!) post-adrenalectomy.

Yesterday – Friday the 13th! – marked the six-month mark since my surgery. Six months! I’m not sure how that happened. My memory of being in the hospital remains crazy-clear and so much more recent. I’m still pondering conversations I had with visiting friends. And wondering if I really *did* flash my scars to everyone who visited.

But. How am I doing? Just fine, thanks. I’m not really due for much in the way of bloodwork until the 1-year mark, but here are the numbers that seem to matter right now:

  • Blood pressure: averaging 122/79. I’m not checking it obsessively as I once did, but am happy to report that when I do, the numbers are nearly always in the 120s/70s. Except immediately after drinking coffee, which is something I’m trying to determine if I should be doing at all any more.
  • Weight: steady at 111, despite the fact that I’m eating rice pretty much daily. Or potatoes. Or hey, when I’m feeling really daring, sometimes both! Before the surgery, rice – the only grain I can eat, due to a miles-long list of food intolerances – made me pile on the pounds pretty easily, and gave me a bit more reactive hypoglycemia than I was comfortable with. Potatoes gave me really, really bad reactive hypoglycemia – full-on food coma, even in tiny amounts. Now neither one bothers me, which is my unscientific way of proving that (a) the tumor caused insulin resistance, and (b) now that the tumor is gone, so is the insulin resistance.

As I keep yammering on about over at the Yahoo board, I really, strongly believe that there is so much more to this disease than hypertension and low potassium. So. Much. More!!! I realize that those two things are the things that can kill, but so can insulin resistance/diabetes, which I am fully convinced goes hand in hand with this illness. And considering how common IR and T2 diabetes are in the U.S., I have to wonder if it’s really a “rare” disease. My mother, for example, is one of seven siblings – the only one not to develop T2 diabetes and die at a younger age than her mother (who lived to be close to 100; her mother’s mother made it to 103!). My mother’s father, on the other hand, died of a heart attack in his early 50s. My hypothesis: adrenal adenomas, all of them, passed down along the paternal line to all except for my mom, who seems to have won the genetic lottery in many ways. Perhaps it’s no coincidence that from a phenotypical point of view, she resembles her mother; I, on the other hand, am a carbon copy of her dad.

I’m also pretty certain that as long as this country’s health care system remains unchanged, this will remain a “rare” disease and people will continue to die young, of heart attacks and strokes and diabetic complications, or suffer compromised quality of life. There is so obscenely much profit in drugs for hypertension (none of which work in PA, but most doctors don’t know that), and even more profit in drugs for diabetes. If a relatively simple surgery like mine can fix the problem and eliminate the need for drugs entirely – imagine the losses the drug companies would suffer. As long as healthcare remains profit-oriented, this cycle is not going to end.

I’ve said all of this before, I know. And I’ve also stated my belief that I’m one of the lucky ones. Not a single day has passed in the last six months when I haven’t thought about this, how thankful I am for the circumstances that made me able to say this: the accident of where I live (5 minutes from a top medical school), the support of my friends (without whom I never would have had the balls to go through with a surgery that may or may not have worked), and my own darned stubbornness (if I don’t like the answer I am given, I keep asking until I do like it).

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

Two months (and a couple days) post-adrenalectomy.

Hard to believe it, but my surgery was October 13 – that was over two months ago! And even though I’ve hit a bit of a bump in the road, I can still say with absolute certainty that it was the right decision. Not that I ever really had any doubts.

The good: The blood pressure remains in the normal range, so much so that I don’t really bother to obsessively track it as I once did. Next month I’ll be getting some bloodwork done to check the other stuff, mainly potassium, more in the name of science and documentation than to check for anything that may be amiss. Because really, the best test of potassium levels for me is headaches and muscle spasms – if I don’t have those (and I don’t, not a single one of either since the surgery) then I know everything is fine.

The bad: I’m still dealing with lingering pain at the incision sites. It ranges from dull-and-mostly-annoying to occasionally bringing a tear to my eye; when my doctor asked me to describe it on a scale of 1 to 10, I gave it 3 for actual pain and 6 for the annoyance factor. I’ve been getting it acupunctured, which seems to help. I was also given the option of an injection into the muscle for pain management – eep! You know, I’m fine with the acupuncture needles, but that… just sounds like a last resort to me, so I’m  not going there. Yet, anyway.

The… interesting: Very little is known about living with one adrenal gland, so I’m sort of keeping track of things that have changed since the surgery that don’t have a direct correlation to the renin-angiotensin-aldosterone system. Here are a few:

  • Weight loss. I’ve heard from others that they lost about 15 pounds almost immediately after adrenalectomy; mostly due to the elimination of salt and water retention. But most of them were overweight to begin with; I wasn’t. I’ve lost close to 10 pounds; to do the math, this is 1/12 of my pre-surgery body weight. I’ve also lost half a shoe size; again, I’m guessing this was from edema of some sort. But the oddest thing? My belly is nearly flat for the first time in my life. Even at my thinnest – 89 pounds back in 1997 when I was first sick and nobody knew why – I had a pot belly. Even as a scrawny little kid, I had one. Now I don’t. Of course this makes me wonder if I’ve had PA for much longer than originally suspected.
  • Eating. After a very long time of eating next to nothing at all because the sodium content made me so sick, I’ve been slowly introducing more… normal food back into my diet. It’s been hit-and-miss. I’ve eaten salty Indian restaurant food a couple times and been just fine. I’ve eaten salty Japanese restaurant food a couple of times and gotten really sick afterward. I think I know the culprit, and facing this kinda makes me want to cry: soy sauce. Specifically, soy sauce made with wheat, which is what is most commonly used in this country. While my tests for celiac were negative and I’ve always operated on the principle that I am gluten-intolerant but not true celiac, those tests were never accurate since I was already gluten-free when my biopsy was done. But my Japanese restaurant encounters have each resulted in full-blown celiac-like symptoms, so I think that kind of says it all. The other possibility is that I’ve developed a soy intolerance. Either way – good times! Only, not.
  • Caffeine, carbohydrates, alcohol: Another post-adrenalectomy patient has written of issues with hypoglycemia as well as caffeine and alcohol. I’ve dealt with hypoglycemia since childhood and have been able to manage it pretty well since I don’t eat sugar and wheat to begin with – simple carbs are the worst thing for hypoglycemia. Since the surgery, I’ve eaten rice and potatoes in small quantities and had no problems, whereas before the surgery eating either would have put me into a food coma even at small amounts. My response to caffeine has been unpredictable – sometimes when I really need it to pick me up, I can have a cup of coffee and still feel like I could take a long nap directly afterwards. Other times I’ll have a half-cup and feel like I’m bouncing off the walls. Green tea seems to agree with me far better, so I’m drinking more of that and less coffee. As for alcohol – I’ve been scared to go near the stuff ever since I had a bad reaction to it last summer during my brief experiment with spironolactone. But I’d like to join in the holiday festivities of the next couple of weeks, so perhaps I’ll have more to say on the subject soon.
  • Acne: My adult-onset acne issues seem to have relocated from my face and back, to just my back. While I was hoping for this to vanish completely, hey, I can live with this. I still think there is lingering hormonal stuff going on and am hopeful that time will take care of this.

So… all of that to say that the good still continues to outweigh the bad. The biggest challenge is navigating the unknown, which I suspect I’ll be doing for quite some time.

Two steps forward…

…and better make that not one, but two, steps back.

Around the middle of last week I began complaining a bit of pain at the surgery site. With the holiday coming up I tried to not think about it too much; I knew that my doctors would be impossible to reach and I didn’t want to have to explain my whole medical story to somebody knew. I went about my business – busy-ness? – driving, walking, yoga-ing, and lifting (been in the midst of a downsizing-my-stuff frenzy).

By Saturday morning the “bit of pain” had become constant. I continued to ignore it, continued the driving, walking, yoga-ing, and lifting.

By Tuesday morning I was worried. Laughing hurt. Coughing hurt. Getting up, sitting down… yep, that too. Breathing hurt. So I finally made an appointment with my doctor, who I saw this morning. And not a moment too soon – I had been up, on and off, since 2am debating whether or not a trip to the ER was in order. I figured no fever, no emergency, right?

I was right. My doctor thinks I pulled a muscle, irritated some scar tissue, or ripped the internal stitches. Or all of the above, considering my pain level. It happens; its not uncommon, even this long after surgery. You can see it – the incision sites are looking a bit red and angry, and my left side is visibly swollen. So it’s ibuprofen and a heating pad for the rest of the day.

And orders to slow down a bit.

Who, me??