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Addison’s Disease—dem bones

How it happened

In 2009, I was having a rough patch. No major illness, but generally feeling pretty tense, tired and terrible. I thought I had some vague virus, so I did what every good sicko should do and got my grizzly self to the doctor, who forwarded me to the hospital for checking. They were worried, and made me change into a gown and sit in a bed all day until one of the endocrinologists could see me. I spent the day freaking out: already worried I was sick, I was taking huge doses of cortisol and not eating much, I began to suspect the hospital staff were ignoring me to make me go away. Take a healthy, sprightly person and deprive them of food and human communication for a day, while they’re sitting in a hospital bed and wondering if anybody is going to help them, and you’ll end up with someone cranky and maybe a little weepy. Take someone already under the weather and all jumped up on excess cortisol and put them through the same process, and you’ll end up with a freaked-out mess. Finally, one of the endocrinology registrars found me. When I told her my standard daily dose (14mg, spread over three doses) she wigged out a bit.  (A registrar is a trainee specialist: as an Addison’s patient, I often get to chat with them to provide them with a bit of experience in an unusual condition.) “I’ve never heard of anybody surviving on a dose that low.” She said. “The average is between 20-30mg per day!”

I was strung out and grateful to be paid some comforting attention: I put a lot of weight in her statement. I should have done some further investigation. When I was originally discharged from hospital after being diagnosed, I was given some advice on management and how much cortisol I should take, and that was immediately blown out of the water by the advice of the registrar in 2009.

Porblems!

In 2011, after two years of just over 20mg of cortisol per day, I started to get pain in my right leg after running. After limping for a week, I took my butt to the GP and he immediately packed me off to get some x-rays done. I had the x-ray at about  9am on Friday morning, and by lunchtime Friday I was scheduled for urgent surgery on Monday to halt the progress of a fracture in the neck of my right femur. After the surgery, my GP pushed me to have a bone density scan done, which showed my bones had become very brittle and thin: hello osteopenia! Two years of far-too-much-cortisol had leached the calcium from my bones.

My GP pushed me to get into the hands of a private endocrinologist rather than the rotating roster of public health system registrars I had been seeing since my Addison’s diagnosis in 2008. The private endocrinologist (who my lovely, excellent GP had singled out as being the best one for me) was pretty startled by a few things: my chronic low Vitamin B12, low Vitamin D, low body weight, and huge cortisol doses. She immediately hauled out a ton of literature to show how to calculate a good maintenance dose and with her help, I wound down to a much, much lower dose. My current maintenance dose is 16mg per day (12mg at 6am, 2mg at midday, 2mg at 5pm).

Fixing

I’ve been on that lower dose for about a year now, and the change is incredible. Small differences I had attributed to  lifestyle changes or getting older (at 28, for fuck’s sake) were actually entirely attributable to the cortisol:

  • dry skin: red and flaky in heated rooms, chilblains, extra lines and creases on my face;
  • changes in hormones: menstrual cycle all but stopped, boobs shrank a little;
  • moods: OHMYGOD the moods; almost always tense, touchy and strained, but worse when hungry (super bitch before breakfast);
  • appetite: appetite and appestat both a bit cactus, so I was never entirely sure if I was really hungry or if I was really full (usually the answer was YES and NO, respectively, but I was never sure and so my weight got a bit on the scary side of low).

Cortisol, in excess, is hard on the body. I’ve lost count of how many weekends I was wiped out and spent a lot of time feeling resentful on the couch.

As you can probably imagine, I am incredibly grateful to have those days more or less behind me. Every so often I have to have a massive dose of cortisol for medical reasons, and the day after I feel completely trashed, tired and tense. I’m amazed I tolerated it for so long.

Another un-looked-for side effect of reducing my cortisol dose was revealing an underlying food allergy. I had started noticing the symptoms a few years ago, but they had never been bad enough to pursue further; the high levels of cortisol were letting me crank through the allergy, ignoring it and therefore never addressing it.

Still fixing

I’m writing this in October 2012, with my crutches on the floor next to me. Last weekend I had another operation to mend a stress fracture in my left femoral neck. I have some pretty hardcore hardware propping up both hip joints now. Reducing my cortisol and amping up my calcium intake for the past 12 months should have been enough to halt the bone-leaching and encourage the bones to rebuild, but it’s going to be a long road: bones are slow-growing beasts.