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Addison’s disease—diagnosis

First up, some details about me: At time of diagnosis, I was 25 years old, short (156 cm) and petite (52 kilos).  Vegetarian, but not too strict; prediliction for wine and cheese; mildly lactose intolerant and not much of an exerciser. Retrospectively, it was obvious that the Addison’s was beginning to creep up on me.  The little signs that I now know to associate with Addison’s were there: my blood pressure was really low, most noticeable after activity; my appetite was touchy, and I found I was full after very little food.  I was really sluggish, especially in the morning.  It came to a head over Easter 2008, where I found the dizziness and nausea, especially in the mornings, suddenly debilitating.  It was very frustrating, because I would be a wreck in the morning, but by late afternoon I could sit up and walk around and eat.  Repeat the next day, but with a slight overall decline.  I now know that the body’s demand for cortisol, which I was at the time rapidly running out of, is at its highest in the mornings, so that was when I really felt its absence. After a week of increasing nausea and listlessness, my partner took me to the doctor, despite my insistence that I would probably be told it was just a virus.  The doctor measured my blood pressure standing and then again while laying down. The standing blood pressure was ludicrously low, and I struggled to stand, or even sit, upright.  The doctor ordered some tests, but my levels of dehydration were so high as to make drawing blood extremely challenging, like drying to draw peanut butter.  The doctor recommended I get some rest and drink a lot of water, then come back first thing on Monday for the tests.  I did so: by Wednesday, the clinic called and asked me to come back, pronto, because there were some quirks in my blood that shouldn’t be there.  The biggest issue by far was the ridiculously low sodium levels: the doctor sat me down in his examining room while he called the endocrinology department.  Over the phone, based on the report he gave them, they diagnosed Addison’s, and urged me to go straight to the emergency room.  The doctor wrote out a letter, urging my immediate admission and referring me to the endocrinology staff, but I was so nauseous, dizzy and brain-addled by this stage that I actually lost it somewhere in the car during our two-minute drive to the emergency ward.

Thank Christ I live in a country with socialised medicine, I tell you what. I was little more than useless by this stage, in a state known as Addisonian crisis: my body’s cortisol levels were approaching zero, and I was approaching collapse.  So I was too useless to make myself known to the check-in staff at the emergency ward, and had to wait until my partner parked the car and dashed in.  The nurses tried to take my blood pressure, but (I learned later) it was much too low to get a reading.  The next thing I am certain of, I was hooked up to a (soon-to-be-loathed) drip of fluids and nausea relief.  My memory of the whole thing is pretty patchy.  I remember being stripped and having sticky pads put all over me, hooking me up to a heart monitor, and getting into a hospital gown.  They took M away to fill out my admission paperwork, and I found that strangely relieving — I rationalised that, if I was dying, they would let him stay with me, but if they took him away for paperwork, they were confident I was going to be conscious for at least another ten minutes.  He came back and I was shuffled through to emergency waiting, where I was closely monitored, kept on fluids, and later brought some dreadful day-old sandwiches.  I’m pretty sure I ate them. Or lost them somewhere. I spent the first night in the Emergency Medical Unit.  It was a long night.  Not busy, thankfully, but uncomfortable.  I couldn’t sleep on one side, because I had a blood pressure cuff on all night for regular checks; I couldn’t sleep on the other because it had a shunt into the vein for fluids.  My first set of blood test samples had been taken (and, althought I didn’t know it yet, had been lost somehow), and my heart monitor beeped furiously if my heart rate went over a certain level.  Luckily, this only happened if I tried to move at all, so it was easy to live with. The next day, another round of blood samples were taken from my increasingly-protesting veins, and after some waiting, the initial suspicion of Addison’s disease was confirmed.  I was then hauled on my wheelie bed to the endocrinology department for what’s known as the short test. The short test involves (a) taking some blood for comparison; (b) a jab of a chemical that normally tells your adrenal glands to go haywire and pump out all the cortisol they can produce; (c) one hour later, taking some more blood for comparison.  In a person with fully-functioning adrenal glands, there will be a vast difference in the bloods taken at step (a) and (c), especially in regard to the concentration of cortisol.  In an Addisonian, nada. I was that nada, and was wheeled back to the emergency unit while they made arrangements to transfer me to the ward.

The feeling at diagnosis is two-sided: you feel tremendously relieved to discover that someone knows what’s wrong with you and how to treat it; that you’re not just bunging it on or sooking.  On the other hand, a big scary pit of not-really-knowing-what-this-new-stuff-is opens up and you kinda have to jump straight in.

Following diagnosis, I was shifted to a bed in the endocrinology ward, where I would daily meet with the endocrinology specialists and I would hammer them with all the questions I had thought of since I last saw them.  Honestly, they don’t mind it.  I suspect they appreciate how hard it is for you: you’re trying to absorb a lot of new information and a lifestyle change, all in a few days, while recovering form illness, and trying to learn in that environment is like standing under a waterfall, trying to catch turtles in a shot glass. So write down everything you think of to ask them, and write down anything you don’t understand — imagine you’re trying to write to a beloved relative and explain what’s going on in your life, and you need to understand it so well you can explain it in non-medical jargon. You need to understand this stuff, and you will get there by asking questions.