‘Under replacement in the short term is more dangerous than over replacement in the short term.’ This is the phrase that a very nice lady from an American charity for adrenal insufficiency keeps using on some forums that I follow. There’s been a lot of deaths the past couple of months due to under replacement during illness where people have got caught out, died in their sleep or, worse, gone to hospital and people haven’t taken them seriously and they’ve consequently died.
Usually I’m pretty practical about it and think I’m quite good at knowing what I’m doing, but, no matter how good I am at getting a feel for what I need to do, it’s still just a feeling- it’s literally guesswork. And, to be truthful, there were a couple of times last year where I did get it wrong and it’s partially fluke that I didn’t become one of those ‘got caught out’ death statistics. I’d be lying if I said that those experiences hadn’t scared me a bit.
So here’s my current thing. I think I have a cold. I say think because I don’t really have any cold symptoms yet except my throat feels a bit scratchy, my sinuses sore and my chest feels a bit heavy and I feel ‘weird’. Most people can say ‘I think I might be coming down with something’, I go one step further and my body gives me a bit of a warning that I think I think I might be coming down with something. So do I need to stress dose?
Pass. I have a gut feeling I do, but it’s just a feeling. My gut feeling is also telling me I don’t need a full stress dose at the moment. However, I’ve just been debating with my GP for the past 6 months about how she thinks my baseline is too high and I’m on too many steroids (my endo has backed me though). So my confidence is a bit skewed because she’s been drilling into me the negatives of being on high doses of steroids. But, respectfully, she also regularly tells me that I’m a special case and out of her expertise, which makes her stress dosing advice slightly unreliable. (I should point out I like my GP and she was looking after my best interests). So I go back to my mantra of ‘under replacement is worse than over replacement.’
It’s a pretty ridiculous situation to be in and wouldn’t happen for other illnesses. You wouldn’t say to a diabetic anymore ‘you’re not allowed your glucose metre, you have to guess what to do with your insulin and hope you get it right.’ Or if someone said to a doctor they thought they were having a heart attack, the doctor wouldn’t turn around and say ‘I’m not sure. I don’t want to overmedicate you. What do you think you should do?’ But I’ve got to work out a hormone level that keeps me alive, based on my symptoms and gut feelings and with very little input from medical professionals. Except hindsight is a wonderful thing and doctors are quite happy to tell me off for not stress dosing when I get it wrong. We all feel a lot of pressure as patients to get it right, which definitely does not help the phantom cortisol levels we’re trying to manage (stress makes it worse). I’m lucky I’ve got a friend to help me work it out.
So under replacement is worse than over replacement. Thankfully, my BP went up a lot yesterday to ‘the last time it was this high I called an ambulance’ stage. I have to say I was relieved. That, along with feeling way more dizzy than usual, meant I had a clear reason to double my last dose I’d taken at lunchtime. Now what do I do with my 5.30pm dose? Pass. I still felt weird and dizzy. It’s also hard to work out because because I had an extra dose only 3 hours ago and a lot of that would still be in my system. I hate maths. It’s like having a plant. If you water the plant every day at the same times and then notice it looks a bit dry so add some more water every now and then. The plant doesn’t drown but also doesn’t seem to thrive any more than it did before. You could say ‘it needed that extra water because it would have shrivelled up and died otherwise’ or ‘I’m not sure if it needed that extra water but it didn’t drown so maybe it did’. My BP could be good because I had the extra dose and it’s working, or it could be good because it was always going to be good anyway. Do I still need a double dose?
I got steroid guilt so I just had my normal dose. Plus having more HC in your system doesn’t actually make it last any longer, it just means you have more, and I’d already covered 5.30 anyway by having the later extra dose from lunch. So I decided to leave it a bit and add in an extra dose before bed if need be- I might not be awake at night but if I’m sick my body is still using cortisol up so it would need to be replaced. Everything still looked ok before bed. But I was still more dizzy, I had pins and needles in my feet and arms which I’ve only ever had when my baseline was too low and I felt really, really lethargic. I figured that if I genuinely hadn’t needed my double dose earlier, I would be more lively than I currently was, so I took another 5mg and went to bed. If I didn’t need it, I wouldn’t be able to sleep because of excess cortisol zipping around my system, if I did need it, I would be able to go to sleep. I crashed out within 10 minutes so clearly I needed it!
Some more maths and another game of ‘what shall I do with my steroids today?’. Here are some things you also have to take into account when working out your dosing:
– the doses have to start off higher in the morning and get lower as the day goes on. Mine didn’t yesterday because I only added the doubles after lunch. Which is ok as a one off but can cause problems if you do it a lot.
– some people can, but I definitely can’t just revert to my baseline after increasing my dose by 15mg the day before.
– i don’t think I need a full double dose remotely but I do think I need an increased dose.
Taking those three points into account, I’ve decided today that unless I have a clear, obvious reason to double everything like I feel really ill suddenly, a high BP or temp, I’m going to take 20/10/10 (total: 40mg) instead of my usual 15/10/5 (total: 30mg). Yesterday I had 15/10/10/5/5 (total: 45mg), which is perfectly fine as it’s just a different way of dosing called circadian dosing. I decided 20/10/10 because:
– the doses start off higher and get lower, so that works
– the total is a slight taper on yesterday by 5mg so that if I don’t need it anymore, I’m not over medicating. But I can always add in another 5mg again at lunch if things look a bit weird then and it still works.
– it’s not a full double dose so I’m not over medicating.
Most people when they have colds have to make the decision between blackcurrant lemsip or lemon. Or have to remember when they last took paracetamol. And their cold doesn’t have the potential to kill them. This is what I have to do when I get sick, as well as the actual being sick part. People who go to the doctors because they don’t know how to manage their cold need to be shot. And, I sound like I’ve got a plan, but it could all change quite quickly. If my temperature goes above 37.5, that’s time to double dose. If I vomit, that’s a double dose and potential injection. My asthma could make an appearance and I have to deal with that too. Or none of those happen and I need to work out a new plan for tomorrow so I can start getting back to my baseline.
Basically I’m playing it by ear and guessing. And I feel more terrible than usual because I have a cold, which makes it harder to work out. I’m writing this blog because it’s helped me feel calmer about the choices I’ve made, it eases some of the pressure I feel and the more people who understand, the easier it is for me if I’m out with you, need to change my dose and start quoting numbers ;). I hate the steroid guilt that comes with making decisions, even if I can justify them. Under replacement is worse than over replacement…