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October 28, 2008

Just when Addison’s disease seemed fairly simple to manage–even if my energy was still fairly abysmal–a new complication arose.

I’ve had significant swings in my blood glucose levels all of my adult life. It has never amounted to diabetes or hypoglycemia. The highs and lows stayed within normal range, but the range was large enough to be bothersome. Bothersome things get tested, measured, and diagnosed. Then comes the decision of vigilance or rebellion. I’ve done both.

Now, suddenly, my lows and highs are far outside of normal range: lows in the low 50s, highs in the 190s. It isn’t just the numbers that are disturbing. I started checking the numbers because I felt crummy.

“Crummy” is kind of subjective. I haven’t been able to stay awake in the late afternoons or very long after dinner. My mood has been abysmal, on a par with what it was when I was found to be estrogen-depleted. Insulin can be a moody hormone.

Insulin resistance is not a typical manifestation of Addison’s, but sometimes occurs with the disease. The fatigue and other symptoms might not bring glucose to mind at all, unless there’s been an irregular glucose pattern historically. Insulin resistance is neither diabetes nor hypoglycemia, because glucose values don’t stay at one end of the spectrum long enough for either diagnosis to stick.

I can always tell when my glucose is too low: I begin to sweat, shake, and become very nervous. By a blessing of God and nature, I become single-mindedly focused on feeding myself something when my glucose hits the nadir. Specifically what I feed myself will determine whether my glucose will simply climb to a normal sustaining level, or shoot like a metabolic meteor.  I have no cues that positively tell me my glucose is too high.  Fatigue and yawning tend to be consistent with high glucose, but those can occur when my glucose is perfectly normal, as well.  Only blood glucose values, not symptoms, can identify insulin resistance.

I was too whacked and too stunned to mobilize myself to figure out what was going on, and I don’t usually run off to the doctor until I have a good idea that I’ve already tested. Besides, these things almost always become most threatening on Fridays or weekends. But really, this is what husbands are for: research and rescue.

My husband set about researching DHEA, because this hormone, like cortisol, the hormone deficient with Addison’s disease, is produced in the adrenal cortex. It was certainly thinkable that if one zone of the adrenal cortex is attacked by the immune system, another zone could be as well–and indeed, often is, as is the case with Addisonians who lose aldosterone production as well as cortisol.

A team of British researchers had the same hypothesis, and their 2000 study is published in The Journal of Clinical Endocrinology and Metabolism. The study found that DHEA decreased insulin resistance.

I began taking 25 mg of DHEA every other day. I also began following a strict diet eliminating sugar and simple carbohydrates. If I can keep to it, the diet will be similar to the South Beach Diet, only without promise of let-ups and reintroductions. I simply cannot tolerate pasta or more than one small piece of whole-wheat bread. My Italian spirit is dispirited, but not as dispirited as it is when I eat pasta or a couple of pieces even of whole-wheat pizza crust.  (Sweets and baked goods have been gone so long I don’t even think of them.)

I hate the crash-and-burn numbers, I hate the moods, I hate the fatigue. It’s come down to a choice between living a full day and eating pasta. It’s easy. I just think of the pasta as poison.  I keep a large covered dish in the refrigerator full of cooked pinto beans.  A slice of Gouda cheese on a scoop of beans, microwaved 40 seconds, allays the jitters.  This simple meal provides protein, fat, and low glycemic index carbs.  Nutrition, and food in general, is honestly my least favorite subject, but ignoring them will bring about my least favorite symptoms.

Many Addisonians, including myself, accept that hydrocortisone keeps them alive, but not vital. The British DHEA study concludes:

“[W]e found that oral DHEA replacement in Addison’s disease is biochemically effective, well tolerated, and associated with improvement in psychological well-being, mood, and fatigue.”

I consider that this study provides evidence on which to base an aspiration I’m willing to strive for by taking DHEA (it’s sold OTC) and giving up poison foods. The study does not discuss the nuances or treatment of insulin resistance.  If you think this issue pertains to you, you should do your own research and seek medical guidance. I’ve been testing my blood glucose levels for a long time and have a lot of accumulated data on which to base my own conclusion. I am not a doctor and I am reporting only on my own experience and intentions.

It’s too soon to assess any results; I’m logging this now to record the beginning of my quest for real improvement of persisting low moods and fatigue, and worsening insulin resistance, following a year of hydrocortisone therapy for Addison’s disease. If any other Addisonians reading this have insulin resistance issues they have resolved with DHEA, diet, or any other way, I’d be grateful for your input.

For my friends patient and interested enough to read this: thank you for your patience and interest in reading this. You mean more to me than pasta.

  1. karen permalink
    November 4, 2008 6:02 pm

    Its good to hear (wrong choice of words) that someone else gets really tired. I never realized that pasta and bread discomfort and stomach spasms i experience were part of Addisons. I wonder why we arent told all things when we are diagnosed , it would be so helpful. Think Iwill begin to look into more the natural and alternative remedies from now on. I want rid of this disease.

  2. November 4, 2008 6:52 pm

    Karen, please realize that nutrition and attention to possible insulin resistance are necessary for health and well-being, but will not eliminate Addison’s. Nothing is going to bring back our adrenal function. Hydrocortisone will emulate cortisol adequately, and cortisol is necessary to life. We will need hydrocortisone for the rest of our lives. Just be glad it’s cheap! Until there was hydrocortisone (and there wasn’t until the 1940s), people died relying on natural remedies for Addison’s. You can’t ditch it. But we can work to enhance life with it.

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