Last April, in an unexpected turn of events, I was diagnosed with an auto-immune disorder called Addison’s disease. I want to put together a few notes that might be of use to other people who get diagnosed. It’s a pretty straightforward condition to get your head around, but living with it and learning some of the finer points is a bit more challenging. Please be aware that I am not, never have been, and am unlikely to ever be, a medical professional of any kind. All of what follows on these pages is purely my experience, outlined for other people’s interest, nosiness, and if it is of any help to anyone, I’m delighted. But please do not base your treatment, judgment or understanding of the endocrine system on my half-arsed words. K? Thanks.
What it is
Addison’s disease is a condition where the adrenal glands can’t do one of their jobs. The adrenal glands are divided into the adrenal medulla and the adrenal cortex. The adrenal medulla does the adrenaline/epinephrine and noradrenaline/norepinephrine, which are the drugs that give that awesome rush when you bungee jump. Addison’s disease doesn’t do a thing to your adrenal medulla; it’s interested in your adrenal cortex. The adrenal cortex doesn’t draw attention to itself. It just pumps away all the time, producing the necessary amounts of cortisol and other corticosteroids — these are divided into glucocortocoids and mineralocortocoids. These do all sorts of things, but the key, day-to-day stuff that they do is vital: keeping your blood pressure right, keeping the volume of fluid in your blood right, ensuring your body holds onto/lets go of the right amounts of salt and water, ensuring oxygenated blood is getting to the brain.
Addison’s disease comes in many forms, but mine is an auto-immune form. This means that, for whatever reason, my body sees its own adrenal cortexes and says “whoa, that’s not meant to be there!” and actively attacks it with antibodies, the same way it would when it recognises a virus or bacteria. It’s a pain in the arse, but there’s not a lot to be done about it. This results in adrenal glands that can do fine on the adrenal/epinephrine front, but aren’t so great on the cortisol side of things.
Living with it
When you live with Addison’s disease, you take synthetic corticosteroid supplements every day to keep you walking and talking and swearing and sweating and moving around and growing toenails. It takes a bit of trial and error, but eventually you settle into a rhythm of tablets, and soon it’s basically a non-issue. The tablets are usually divided into the mineralocortocoids (usually fludrocortisone, under the brand Florinef) — one small dose in the morning — and glucocortocoids (usually cortisone). There are other options, as well, like prednisolone and, less commonly, dexamethasone, but my understanding is that cortisone is the most common.
Once upon a time, they used to suggest 30-40mg of cortisol in the morning, and that was it. This is thought now to be way over the top, and, from personal experience, I can tell you that 30mg, even spread over a whole day, is far too much for me (on a healthy day). Most Addisonians find they function better if they take a moderate dose in the morning, and then smaller doses through the day. In a healthy set of adrenal cortexes, there’s a peak just before you wake up and another smaller peak on the cusp of the evening. Addisonians are encouraged to mimic this with their dosages. They vary wildly, of course, with everybody. Everyone is slightly different, and you have to find out what works for you.