Wish list.

I updated my database entry at the Yahoo Hyperaldosteronism Group earlier today. One of the questions is a pretty standard checklist of symptoms before treatment. I’ve bolded (and turned red) the ones I have now (or have experienced in the past).

  • heart palpitations or irregular heart beat
  • poorly controlled blood pressure despite multiple meds
  • brain fog or feeling of confusion
  • getting up at night to pee
  • muscle cramps, tremors or twitches
  • headaches
  • numbness or tingling of extremeties
  • episodes of unexplained sweating/flushing/feeling hot
  • muscle weakness
  • unexplained chest pain
  • unexplained thirst
  • metallic taste in mouth
  • unexplained feeling of anxiety

Many of these – palpitations, muscle cramps, numbness and tingling, muscle weakness – are caused by the low potassium that is typical in the later stages of PA. Quite frankly, this is the part of PA that worries me the most – I walked around with low potassium for at least 4 years due to the general incompetence of my former doctors, and this is serious stuff – it could kill you. If this and only this was resolved by the surgery, I would consider it a success.

To the above list, I would also like to add these issues that, with luck, will resolve:

  • 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
  • water retention after eating salt (up to 7 pounds (!) from a single restaurant meal)

I’ve been living with all of the above, in various combinations and varying levels of severity, for at least the past ten years. The reactive hypo and salt sensitivity I’ve had since childhood. Even if the surgery does not fully resolve the blood pressure issues, if even half of those symptoms go away, I will be a very happy person.*

Have I missed anything? Fellow PA sufferers, how about you – what symptoms would you like to see go away?

*Somewhat unfortunately, removal of the misbehaving adrenal will not resolve my dietary issues with fructose- and gluten-intolerance. Nor will it make my tendency to be allergic to everything go away. But hey, I’ll take what I can get!

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Weight just a minute.

While waiting for my appointment in the very busy office of the endocrine surgeon, I noticed one thing right away: I was the only person present in the waiting room who was not overweight. Overweight, actually, would be an understatement in describing the other patients: I’m pretty sure every one of them would have qualified as obese. Even the young girl, who could not have been more than 11 years old: she probably outweighed me by a good fifty pounds.

None of this should come as a surprise to anybody who knows a thing or two about the endocrine system. In addition to adrenal diseases, this field encompasses such things as thyroid, parathyroid, pancreas, and liver. And as anybody with an endocrine disorder knows, when this system is defective, weight loss becomes nearly impossible.

The very first sign that I had that I was sick was weight gain. I’m short – 5’3″ if I stand really tall – and very small-boned. In 2000-2001, when I first became ill, I had never weighed more than 103 pounds. Usually I weighed less – somewhere around 95.

But by early 2001, I mysteriously gained 50 pounds over the span of a couple of months. Nothing had changed in my diet or lifestyle – I walked a lot, rode my bike at the beach, went to yoga, and was a vegetarian (albeit an unhealthy one – more on that later). The sudden weight gain freaked me out, but at the time the doctor I was going to felt that, as a then-36-year-old woman, I was better off at 140 pounds than 95. I tried to believe him, but I wasn’t convinced. And I wasn’t going to buy that bit about the middle-aged middle: I didn’t, and I still do not, believe that with middle age comes weight gain. Not unless something else is wrong.

I obsessively tracked every low-fat, vegetarian – vegan, actually, at one point – bite. I did not exceed 1000 calories a day, ever. I ate the food pyramid’s recommended 6 servings of grains and 5 fruits a day – and really, little else. Minimal protein, as little fat as possible. The nutritionist my doctor sent me to reviewed my food log and proclaimed it “exemplary.”

I developed severe gastrointestinal symptoms – use your imagination, you name it, I had it. I had chronic migraines. My left side went all numb and tingling, to the point where I could barely carry anything. I qualified for a disabled placard, which I rarely used because on outward appearance, I looked young and healthy. When I would pull into a disabled space at Trader Joe’s, people would give me dirty looks, or worse, call me a liar.

I got tested for all the wrong things. First the doctors thought it was MS, then fibromyalgia. Eventually I found myself a step or two ahead of them and diagnosed myself with B12 an zinc deficiency – and I was right. Adding some chicken and seafood back into my diet – reluctantly, because I’ve never much enjoyed knowing my food once had a heartbeat – solved the headaches, numbness and tingling. But I was still fat, and still sick to my stomach almost all the time.

Then I lost my job, and with it, my health insurance. And in late 2001, the incident that led to my first ever diagnosis of hypertension happened, and I found myself in the emergency room at County-USC, along with the gunshot victims and gangbangers, getting an education but not much in the way of answers.

The answers began when I was seen by a free-clinic doctor from Iran, who had been educated in Moscow. Rather than push pills, like the American medical establishment is oh so happy to do, she asked me extensively about my diet. Her first question – “Do you eat a lot of carbohydrates?” – left me feeling stupid, because I had absolutely no idea what a carbohydrate even was. Without running a single test, she told me that my “exemplary” diet was severely deficient in protein and that I was likely intolerant to gluten and fructose, in addition to lactose (the latter I had been diagnosed with in infancy). She diagnosed me as insulin-resistant. I was really, really clueless about what any of this meant. She told me to read Atkins.

I was horrified. Didn’t that mean, like, eating bacon dipped in mayo? But I read it anyway and thought the basic premise – eat more vegetables, sufficient protein, and ditch the grains and sweets – seemed pretty sound. So I tossed out all the “healthy” granola bars and vegetarian frozen dinners in my kitchen, and stocked the fridge with fish – the only protein I was comfortable cooking at the time – and veggies.

And within 3 months I had lost fifty (!) pounds.

Oh, and the gastrointestinal distress was gone completely.

That was in early 2003. I’ve maintained the weight loss ever since, except for when I have occasionally tested myself by eating rice or legumes or potatoes, each time putting on somewhere between 10 and 15 pounds within a couple of weeks. None of this is difficult for me, except the eating animal protein part – I’ve never been comfortable with it and probably never will be. But avoiding all the foods that make me fat and sick? Not a problem.

The thing is, though, it seems to be a problem for just about everybody else. On the two support boards I frequent where hyperaldo patients hang out, it seems that EVERYONE is overweight. And why shouldn’t they be? First, our disease predisposes us to insulin resistance due to our potassium problems. Secondly, most of us are being given the advice to follow the DASH diet, a government-backed approach that is heavy on this country’s government-sponsored grains (and sugar-fortified grain products).  And as I have proven, through my science experiment of one, insulin resistance + grains and sugars = FAT. There’s a reason animals destined for slaughter are corn-fed.

In this country, we are constantly bombarded with government-mandated nutritional advice that is slowly killing us while at the same time making us dependent on Big Pharma, doing nothing for our health and wellbeing but working wonders at growing profits for both the pharmaceutical and agricultural industries. To cite but one example: the American Heart Association puts their seal of approval on Bisquick and Cheerios – both calorically-dense and nutritionally devoid of anything beneficial, but hey, both made by Big Agribusiness companies that liberally dole out cash to the AHA. By following the AHA’s advice, not only is it guaranteed that demand for these government-subsidized products will continue to grow, but demand for drugs to treat the conditions that they contribute to – heart disease, obesity, diabetes – will also grow. Capitalism at its finest, folks.

Time and again I see people in the hyperaldo groups post about how they gained 40 pounds in 3 months. Yeah, so did I. But I was able to lose it, and I have been able to keep it off – but only by ignoring conventional wisdom and figuring out what actually works. Or they post about how the government-backed DASH diet is making their postprandial glucose rise or causing hypoglycemic symptoms or other undesirable metabolic problems. Yeah, I know; if I ate that diet I would very quickly go from “borderline insulin resistant” to T2 diabetic, I’m sure of it. It just wouldn’t work for me; I would trade one health problem for another. I don’t consider that an option.

What works for me isn’t necessarily going to work for the next guy. Quite simply, here’s what works for me: I’m stubborn as hell and I hated being fat, so I will do just about anything to ensure that that never happens to me again. I don’t know what will work for you; I can only report back on my science experiment of one. But I do know this – that middle-aged guy who came to the endocrine surgeon’s office with a soda in each hand? That’s not gonna work. The 11 year old girl whose mom gave her a pastry and a soda while she waited? That’s not gonna work, either. And the guy on the support board who refuses to say goodbye to his Subway  sandwiches washed down with a gallon of Gatorade? Sorry.

Three out of three doctors agree.

It’s official – my entire medical team has reached the agreement that my left adrenal gland has to be given the boot. As of now, that October 13 date is a go.

Between now and then, my job is to get a physical, EKG, and stress test. And not run any fevers, catch any viruses, or otherwise get sick in any way that will make my potassium level tank.

Oh yeah, and to try not to worry too much 🙂

Met with the endocrine surgeon.

Sorry, no time for a creative title, just tellin’ it like it is. Met with Dr. Harari at UCLA this morning and the next thing I knew, I was scheduled for laparoscopic adrenalectomy on October 13! Assuming everything falls into place between now and then – insurance, pre-op physical exam stuff, yada yada.

Dr. Harari gave me this diagram of my most recent AVS results. She’s the first one to present the information to me in a way that, as a visual learner, I can easily understand.

Those numbers circled on the left? Those are the important ones. You can click it to embiggen.

Don’t want to speak too soon, but…

… I just got off the phone with my primary care doctor, who called to read me the AVS results. It was a cruel joke of an ordeal involving my cell phone cutting out every thirty seconds or so, combined with my dyscalculia (diagnosed in college! really!!) causing me to write everything down wrong, but there were two main takeaway points that I hope hope hope are accurate:

  • He believes the procedure was done correctly this time.
  • The left to right ratio was 18:1 showing the abnormality on the left side.

He’s not the final word; that would be my nephrologist, who I don’t expect to hear from until next week at the earliest. So I can’t say for certain that any of the above is true and correct.

But I can say I sure hope it is.

Waiting waiting waiting.

Tomorrow marks three weeks post-AVS. As of today, I know – nothing. Zip, nada, bupkis. My primary care doctor said he’s going to try to see if he can dig up anything via UCLA’s computer network within the next few days. I’m not holding my breath.

I am, however, making lots of stupid mistakes, forgetting important things, and in general feeling run down and worn out. But hey, perhaps it’s not my fault! According to this study:

anticipating medical test results

affects processing and recall

of important information

No kidding??