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Addison’s Disease–getting sick

I’m probably not saying anything controversial when I say getting sick sucks. And when you’ve got Addison’s Disease, you may just discover that it can be super sucks. The medicos who have helped you find a diagnosis and who are helping you learn about and improve your condition will always tell you: you need to increase your cortisol if you have Addison’s and you get sick. “Sick” also includes other kinds of physical trauma, like fractures or losing blood (I think the rule of thumb is “a cup of blood” which made the pamphlet I was reading suddenly much more sinister). For those kinds of emergencies — and, with Addison’s, they can become emergencies very very quickly — you need much bigger and more urgent doses of cortisol, and for this reason most Addisonians carry a pack of emergency sharps (intramuscular dexamethasone, for me).

But for this piece, I’m talking about your more familiar everyday sicknesses. The kind you get from brave or misguided coworkers dragging their sniffling butts to work because they can’t get sick leave. Or the kind you get when you diligently take yourself to the doctor for a pap smear and then someone’s kid wipes their nose on your knee and you realise your diligent self-care had cultivated its own hubris for which you were about to be punished by being turned into a snot nymph. Here’s my experience in negotiating these illnesses while saddled with Addison’s disease.

Please be aware of one major concern: Addison’s Disease can very quickly develop into a life-threatening situation. Under the duress of illness, the body can very quickly move into Addisonian (or adrenal) crisis: this is life-threatening. If you or someone you’re caring for with Addison’s Disease rapidly deteriorates, take them to a hospital, as quickly as you can. Please work with your medical provider, get all the advice you can, and always err on the side of caution. What follows is not advice or recommendations: it’s just me sharing my experiences.

Colds

I’ve been able to have fairly straightforward colds so far (i.e. no bacterial infection, no ongoing viral fatigue or followup issues). Generally the Addison’s symptoms come before the cold symptoms. I get mentally tired, indecisive, and easily confused. I become physically weary and uncoordinated, not to mention humourless. And that’s when I start thinking “hmm, it would not surprise me if I’m getting sick.” And then a few hours later, my throat starts to hurt and I think “ahhh, there it is.” I’ve learned that I can’t muscle through colds the way I did before I had Addison’s. I have to rest, as soon as I can, and for as long as I can. I have to usually more than quadruple my cortisol: from 12mg-2mg-2mg (6am-midday-5pm) to 40-50mg-20mg-20mg, for example, is not uncommon. I also have to do all the cold symptom medicating, like ginger tea and cold/flu tablets and sniffling until I want to hack my face off, and sleep a lot. But it’s short-lived! Only a few days. However: the big eye-opener is that I need to maintain an elevated dose for days well after the symptoms pass. That means the body is still demanding more cortisol as it continues to counteract the cold virus. Gradually, I find that the cortisol is beginning to leave me feeling wired and interfering with my sleep, and that’s when I start tapering. There’s inevitably a day or two where my body is recovering quickly and I haven’t quite dosed correctly and I’m overdoing it, but that’s okay. At least I know what’s happening.

Weird and mysterious unresolved illness

These pop up waaay more often than I had ever considered when I didn’t have Addison’s. I now have a half-arsed theory that we are dealing with low-level bugs and viruses an awful lot of the time. Sometimes it will be as little as suddenly becoming fuzzy-headed, pouty and indecisive, and then I figure something’s probably up and fuck it, I’m going to bed. Sometimes it will be bigger: I will realise I need a cortisol boost and increase accordingly, and then I’m fine. No other symptoms emerge, and the increased cortisol returns me to normal. After a few days (usually), I start to feel overmedicated and begin to taper it back to my usual dose. A mystery to never be resolved, as far as I can tell.

Gastro

Ooooh, this is a tricky one. Gastro is nasty: a sudden (sometimes very sudden) disruption to the very system that you rely upon for life-sustaining drugs. Add to the mix that the virus causing the disruption means you need more cortisol than ever, right when it’s hardest to get it, and you realise gastro is a dangerous and scary situation for an Addisonian. Since I’ve been diagnosed, I’ve had gastro once and Salmonella poisoning once, and both times I needed hospitalising. I had Salmonella poisoning the same year I was diagnosed with Addison’s, and didn’t realise my ever-shrinking level of consciousness was indicative of an adrenal crisis until I saw my GP and he packed me off without passing Go. Last year I caught a gastro virus and became very ill. At first, M and I tried to cope by having me chew up cortisol tablets immediately after I threw up, to maximise the likelihood of my absorbing enough cortisol to help counteract the virus before I next evacuated my innards. An optimistic but ultimately futile strategy, we ended up packing a bag and heading to the hospital. There was a bit of waiting in hospital, as they didn’t realise the signs of a galloping adrenal crisis (including, for me, telltale uncontrollable shivering and coldness, which they attributed to a fever I didn’t have), but ultimately I was in safe hands. Onto an IV for cortisol, fluids and anti-nausea meds, I finally got to sleep and emerged the victor (if a little battle-scarred). Discussing it with my endocrinologist shortly after, she was shocked, and said (I will never forget): “No. Next time, you go straight to hospital. Don’t mess around at home: Addison’s does kill people.” So that’s my plan for the future.

General principles

These are the three I feel most familiar with. Here’s how I know when to increase my dose and when to decrease, since those processes almost never line up with the symptoms of the illness.

When to increase:

  • foggy in the head: easily confused and distracted, indecisive, self-pitying;
  • emotionally drained: a bit depressed and despondent, but certainly not energetic about it;
  • tired! So tired. Mentally and physically: significant physical weariness;
  • appetite: definitely down; if I eat, I feel full far too soon and then queasy.

When to decrease:

  • feeling very bright in the evenings, especially after dinner: flushed red cheeks, giggly, chatty, very up;
  • going to sleep becomes hard;
  • staying asleep becomes hard;
  • cheerfully argumentative;
  • slightly manic.

The decrease phase usually overlaps with still being tired from the illness, and having too much cortisol is, in itself, exhausting, so this tends to create a long tail of fatigue.

One more reminder: this article is a discussion of my experiences with Addison’s Disease. Do not take this as medical advice. Talk to your medical adviser about long-term management and short-term crisis management of Addison’s Disease.