After talking about Baselines, it makes sense to explain Stress Dosing. Stress isn’t just emotional stress, it’s anything that puts the body under additional pressure which would require more of the stress hormone, cortisol. There are stress dosing guidelines which we follow as patients, but they don’t take into account the different causes of Adrenal Insufficiency (primary or secondary) and how that can impact on how the body perceives stress. Nor do they allow for the fact that patients are humans and stress is different for everyone. If you don’t stress dose adequately when needed, you put yourself at risk of Adrenal Crisis, which is classed as a life threatening medical emergency. This is why patients are given an emergency injection, which gives you a large dose of Hydrocortisone into muscle.
A stress dose is a double dose of your baseline, so my stress dose would be 20mg/10mg/10mg of Hydrocortisone at the usual baseline times of 8.30, 12.30, 17.30. The guidelines are also known as ‘sick day rules’, called this because a lot of the time you stress dose when you’re sick with an illness. Here are the sick day rules I was given:
A fever of 1 degree+ normal or more than 37.5 would be a double dose, and a temperature of 39 would be a triple dose/use the emergency injection and go to hospital.
The problem with the rules above is that I’ve found you can’t follow them religiously, much to my disappointment, because that would make life easier! You have to work out from experience what works for you. What’s also tricky is that the symptoms of an Adrenal Crisis can also be similar to those of a ‘normal’ illness, so it’s sometimes hard to work out- a stomach bug won’t directly kill me, but if I get it wrong stress dosing wise, it easily could.
A cold with no fever, in theory, doesn’t require a stress dose. Sometimes I do, sometimes I don’t. It’s a tough one to work out but I know now that I get a specific feeling which I know means I should stress dose- I can’t really describe it, it’s a bit like a wave or a flood sensation.
The fever/flu/infection one is quite straight forward. Although I tend to stress dose until I feel better rather than tapering as soon as the antibiotics finish or temperature goes down (more on tapering in a bit).
I’ve stress dosed for sickness and diarrhoea in the past and sometimes it’s fine and sometimes I have to go to hospital. Often, I just have an upset stomach so can manage it at home, other times it can be an indication of a crisis coming rather than an illness itself. Having read things online, patients tend to follow: if you’re sick once, double last dose and take it again, if you’re sick again before the tablet absorbs or more than twice, use your emergency injection and go to hospital. If you have 1-4 bouts of diarrhoea in an hour (less of a problem than vomiting), double last dose and if you have more than 4, inject and go to hospital. Some people’s ‘tolerance’ is lower/higher though- I use my gut feeling with this a lot.
I’ve not had surgery so can’t comment on that, but I updosed for a filling at the dentist because that’s what other people’s sick day rules in other countries say and I thought I’d play it safe because of the anaesthetic- I needed it. An updose is when you take an extra 5mg, or sometimes 10mg, just before or after something which has rapidly depleted your cortisol. It doesn’t mean you have to double everything and it doesn’t have to be taken at one of the set times, it just gives you a bit more coverage to get you through the temporary stress. You can’t do this every day though for ‘normal’ activities, you should look at what’s making your cortisol lower and think about how you could do that differently instead ie prevention before rather than action after.
Severe shock or bereavement is usually massively underestimated in AI patients. This is a considerable cause of crisis because even if mentally you’re dealing with something fine, your body can react anyway. I use my gut feeling with this one too. But if you’re going to give bad news to someone who is adrenal insufficient, make sure you tell them to take some steroid first!
Flying is another interesting one. My system can’t cope with flying, so I always updose/stress dose regardless of the duration. For short haul flights, I tend to take an extra 5mg half an hour before, long haul I stress dose for. It’s possibly also partially to do with the fact that airports are big places, you have to walk so much further than usual and getting up early to catch the flight can take its toll. Believe it or not, excitement and happiness also drain cortisol!
General stress is another tricky one. Most of the time it’s fine, but I can’t cope with confrontation on some days, even a ‘friendly’ debate about the EU referendum got me so wound up once that I had to updose- that’s how random it can be! It’s usually to do with what else is going on at the same time in your body though. With the EU debate, it was mostly because I was run down with an undetected virus, and the argument happened to highlight that.
If I were to be in a car accident, I’d likely need to call an ambulance and inject even if I seemed fine because once the adrenalin wears off and shock sets in, I could potentially become seriously ill very quickly. If I fell down the stairs and broke my leg, it would be a similar scenario. Surprise or being scared also can count as shock, just to varying degrees.
You can also see from the Sick Day Rules that it tells you how long you should stay at the stress dose and how quickly you should taper or go back to your baseline. Going back down immediately is called a ‘rapid taper’. If I do that, I crash and end up in a worse position than I was to start off with, and usually whatever illness I was fighting comes back with a vengeance as well. My Endocrine Nurse adjusted my Sick Day Rules to take this into account, so I do a slow taper instead, which is a reduction of 5mg every 2-3 days depending on how I’m coping with it/level of activity at the time. It usually looks a bit like this, but I do change it sometimes in the later steps (depending on some other factors):
In the UK, the guidelines are quite ‘strict’ as to stress dosing and the situations to do it. In other countries, patients are ‘allowed’ to updose and stress dose with more flexibility, such as for exercise, which means we tend to have more ‘steroid guilt’ here when we’re not on our baseline than other patients elsewhere. A lot of my condition is based on maths, which is hard if you’re not good at maths (like me), or your brain is foggy and you can’t compute it properly because you’re feeling ill. A good general rule is: if in doubt stress dose. Too much steroid temporarily (within reason) won’t harm you, too little could kill you.