What remains.

Today marks two weeks since my adrenalectomy! Last month I posted my Wish List of things that I hoped the surgery would resolve. Here I’m reposting it, and have crossed off the issues that seem to be gone – many for the first time in 10 years.

  • heart palpitations or irregular heart beat
  • poorly controlled blood pressure despite multiple meds
  • brain fog or feeling of confusion
  • muscle cramps, tremors or twitches
  • headaches
  • numbness or tingling of extremeties
  • episodes of unexplained sweating/flushing/feeling hot
  • muscle weakness
  • unexplained thirst
  • metallic taste in mouth
  • unexplained feeling of anxiety
  • water retention after eating salt (up to 7 pounds (!) from a single restaurant meal)
    – okay, truth be told I haven’t eaten in a restaurant yet since I’m still eating child-size portions of food, but I have eaten takeout from Whole Foods just about every day since I’ve been home and have not had any problems

Too soon to tell:

  • insulin resistance
  • reactive hypoglycemia
  • severe, life-disrupting menstrual irregularities
  • adult-onset cystic acne
  • vision disturbances
  • hair loss ( I leave DNA evidence everywhere!)
  • dark hair growth on chin and upper lip

In addition, I still have a hepatic hemangioma. This is what happens once one starts getting scanned and poked and prodded – stuff that shouldn’t be growing inside of us gets found. There’s a bit of a link between estrogen and hepatic hemangiomas, which has me a little worried – I’ve already got a history of benign breast cysts that are also thought to be estrogen-driven. And before the surgery, my labs showed abnormally high estrogen and abnormally low progesterone – whether or not this was triggered by the hyperaldosteronism, or is just a normal part of pushing fifty, will sort itself oout in time I suppose. My OBGYN presumes it’s the former; I’ll probably have all this re-tested early next year. My hepatic hemangioma appears to be doing nothing much at all, and I certainly hope it stays that way. Its presence is not quite as disturbing to me as the adrenal tumor was – in the case of the HH, they know it’s benign based on how it looks, and the likelihood of it doing anything that could kill me is pretty small. However, I do wonder if it’s responsible for my inability to process fructose, which is, after all, metabolized in the liver.

Which brings me to my next point – I still can’t eat sugar. Or wheat. Nor, quite frankly, do I want to. But – and this is cause for rejoicing! – I can eat salt! And I can eat in restaurants again! It’s funny, so many of those close to me have reacted with “Now you can eat whatever you want, right?” and then seemed so disappointed when I explained that the salt/restaurants issue was related to the bad adrenal, but the sugar/gluten issues are not. I will always have fructose intolerance, and I will always have gluten intolerance – these are genetic. And lactose will always be questionable (but not damaging in the way that fructose and gluten are) as most people with fructose and/or gluten intolerances are sensitive to it, and I’m no exception. So, nooooooo – I still won’t get excited over cupcakes, or ice cream, or sandwiches. But that’s okay with me! Because I can eat Indian food again! And Thai food! And things that weren’t made in my own kitchen! All of which, really, is way more exciting to me than, say, a cookie. A piece of pie, on the other hand… now that I still pine for from time to time. Or a loaf of challah. Or a big bowl of raspberries. We won’t talk about that.

Three weeks, five days, and still counting.

That’s almost a MONTH, people, since I had my AVS and still – nothing. No results. No decisions being made about, oh, you know, what the rest of my life will be like.

I’m bringing another doctor on board for this ride tomorrow. He’s an endocrinologist at UCLA and known to be very forward-thinking and open-minded. I met him once before, probably 6 or 7 years back, when for a brief moment I had PPO insurance that he accepted. At the time, he agreed with me that my hypertension was probably being caused by something else, and he wanted to do some testing for hypercortisolism/Cushing’s Disease. Right general idea; wrong condition. But pretty likely that hyperaldosteronism would have eventually turned up. But my insurance carrier changed to crappy Blue Cross HMO and I couldn’t see the endo to follow through. There you have it – the American healthcare system in action. If my healthcare coverage was not tied to my employer, I might have had a diagnosis six or seven years ago. But I digress.

What I’m hoping to get out of this visit – besides reassurance that six months plus of untreated hyperaldosteronism is an okay thing – is a central point-person to deal with all of my symptoms. The symptoms everyone seems to care about are the hypertension and the low potassium, because, well, those can kill you. But I’ve got a boat-ton of other symptoms – insulin resistance, hypoglycemia, headaches, a laundry list of digestive woes, and a ton of gynecological stuff. My nephrologist (who is the PA specialist) believes these are all related to the tumor. All well and good, but please, somebody do something about it, okay?

Oh. And did I mention that they also found that I have a hepatic hemangioma? I don’t think I did. It’s 33mm, which to my mind is dangerously close to a giant hepatic hemangioma. Which can cause – ding ding ding! – lots of gastric woes. So I don’t know which one to blame; all I know is I’ve got stuff growing in me that isn’t supposed to be there. Out, please.

Right now, my nephrologist is dealing with the testing stuff, my internist is monitoring my potassium, and my gynecologist doesn’t want to do much because he doesn’t know how it will impact the testing. Everybody blames the low potassium for everything else, but yet nobody is doing anything to deal with the problem.

Meanwhile, I’m expected to hold down a full-time job and function as if everything is normal when it’s anything but. I think in general I’m what could be called a tough cookie, but this? This is definitely testing my boundaries of tough cookieness.

So, hey. If I seem a little out of it, that’s because I am.