It’s not an exact science. It’s a guessing game in fact. Imagine you’ve got a ‘guess how many sweets are in the jar’ game and you’re told you need to add sweets until it reaches a thousand. The sweets are different shapes and sizes so you can vaguely eyeball it and make a random guess, but it’s still a guess. It’s tempting to think ‘well it doesn’t matter if it’s not exactly a thousand, as long as it’s vaguely close’.
Except it does matter, because a thousand is the number which definitely keeps you safe and out of adrenal crisis. So, with that in mind, you can take a gamble and not quite add enough sweets (steroids) to make a thousand and it might be ok or you can over compensate and add too many, but then not be able to get the jar lid shut properly and have to work out what to do with them. Oh and there’s a hole in the jar so some leak out periodically as well, just to add to the confusion.
Managing cortisol levels is a bit like the guess how many sweets game anyway but it gets more complicated when ill:
– you can’t predict how bad the illness might get so don’t know whether to overfill the jar ‘just in case’ or just add a few more in.
– the sick day rules of stress dose for fever, vomiting and diarrhoea are a good place to start, but sometimes you have to stress dose for viruses which don’t have any of those.
– it depends on the other ‘stressful’ things going on at the same time.
– you might not even feel ill but be fighting something without realising it.
Not knowing I’m ill is what catches me out. I’ve had 2 viral infections, a kidney infection and a UTI all land me in hospital on separate occasions but I’ve not realised I’ve been sick quick enough and ended up having to go to hospital. It’s really hard not to beat myself up about it because it seems so obvious afterwards, but considering the doctors in hospital take a bit of time to work it out with their lab work and tests, I try not to blame myself. I feel like what most people feel like when they have a virus or infection every day anyway, so it’s not like I feel any different. It’s also hard to work out what you should be doing when you just have a vague ‘feeling’ that you should be stress dosing but can’t pinpoint it. And statistically, according to charities, patients with my ‘brand’ of secondary adrenal insufficiency are more likely to require hospital intervention for illness than pituitary causes of secondary AI, although it’s unclear why. In other words, medics don’t know an awful lot about us yet so can’t give us specific sick day rules.
But something does change beforehand, I’ve noticed a slight pattern now. I’m ignoring the time I was admitted with one of the viral infections because the doctors thought I had Sepsis and it was a bit more complex leading up to that admission. But the other times, something prompted me to check my temperature and it’s always come back as between 35.5 and 35.8 in the days leading up to it (baseline temp for me is 36.3). So whatever it is telling me to check my temperature then got lulled into a false sense of security because you only should stress dose,in theory, when it goes to +1 your baseline (so 37.3 roughly for me). I always feel ‘weird’, I can’t explain it but I feel strange. Not anything bad but just a general feeling of murkyness. There’s also been this funny pull behind my eyes.
Then, by the time my BP, heart rate and temperature do go high, it’s a bit late for me to do much about it myself. The time the doctors were querying sepsis, everything was normal all day and then my temperature went to 39 degrees, my BP to 195 systolic and my HR 175 in the space of about an hour. Which meant IV Hydrocortisone, fluids, paracetamol, antisickness meds, 4 rounds of antibiotics and getting put above everyone else except for someone in cardiac arrest. But I felt fine that day until I suddenly didn’t.
So maybe next time my temperature drops I’ll stress dose. It goes against the sick day rules but the only time my temperature seems to drop is right before I get sick. As patients, we’re conditioned to only take the steroids we need to survive and not add in extra, so we tend to fret about needing to stress dose and get steroid guilt. But, now there’s a bit of a pattern, I think I’d rather get it wrong and take too much than not take enough and end up in hospital. Everything is a learning curve!
Photo: the Guardian