Adrenal suppression: Hi everyone I was... - Asthma UK communi...

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Adrenal suppression

ccccc profile image

Hi everyone

I was put on 5mg Pred in 2020 due my asthma flaring up after several emergency courses (actually think it was Covid but no testing around at the time) and to cut a long story short my cortisol levels are now very low. Had to really push respiratory to do a short synacthen test, which came back that my adrenal is suppressed, though there was a reaction to the substance they give you to stimulate your adrenals. Wasn't a shock as I feel extremely tired in the mornings and often feel very washed out and dizzy. They were just content to leave me on 5mg and repeat the test in 6 months which I wasn't happy with. I saw an Endocrinologist privately who agreed that things would basically be the same in 6 months if just left as I was so he's suggested switching me to hydrocortisone tablets while we taper off the Pred. Only problem is respiratory don't know about this, so I've got a GP appointment next week to ask if she will do it all on the NHS as he also wants me to have another synacthen test in three months privately to see if the new regime has worked, which I can imagine will be expensive.

Must admit I feel quite low and very tired today, any kind of stress doesn't help either as I know cortisol is the stress hormone. Has anyone else tried this new regime? I am really worried that this suppression is going to be long-term and I'll end up feeling like crap on steroid tablets.

4 Replies
Lysistrata profile image
LysistrataCommunity Ambassador

HI, I had steroid-induced adrenal insufficiency for several years but now recovered (my baseline wasn't awful but i didn't respond much to stimulation). I was on 5mg pred until the diagnosis was confirmed; it was 'safe'but I felt crap, especially in the evenings. Hydrocortisone is closer to natural cortisol and usually preferred for adrenal insufficiency, and I felt much better when I was on a split dose of 20mg hydrocortisone, even though that's technically the same as 5mg pred (hydro isn't as strong as pred). In particular, I found I needed to take my largest dose early in the morning or I would feel crap all day.

I've written a massive post about this which should hopefully help.

I would add that respiratory teams on the whole do not seem to be good with adrenal stuff and generally shouldn't be trying to manage it all themselves (would they think it was ok for a diabetic or someone with Addison's who develops asthma to have their asthma managed entirely by the endo team? I'm guessing not!) I would definitely push for a referral to endocrinology.

I was referred to an endocrinology specialist nurse who was very helpful. She also sorted me out an emergency steroid injection and we discussed sick day rules (she said most of the stuff isn't really written with asthmatics in mind and was happy to listen when I said that even though it says not to updose for a cold, I usually needed to because that set off my asthma). I did have one crisis and used my injection, when I had a viral infection that set off my asthma. Don't let anyone tell you that steroid-induced AI doesn't have crises (yes, I have seen that idea floating around from drs).

Hope this helps!

ccccc profile image
ccccc in reply to Lysistrata

Hi Lysistrata

Thanks very much for your reply and your link to your very helpful post, I'm glad to see you have recovered as it looks like we've had a similar experience with Prednisolone, lots of short sharp courses and a longer-term low dose course.

The endo consultant I saw privately said much the same thing about Pred being more impactful on your body than hydrocortisone. I've been given sick day rules but nothing about emergency injections, though I was given a steroid card with this information on if I do fall ill and need treatment. I've been quite lucky as I haven't had any other illnesses or need for dental treatment since being on 5mg so I've never needed to double-up. I had one scary weekend last year when I stopped the Pred before I knew about AI and I felt so wiped out all weekend until I re-started it. I was lucky not have ended up in hospital knowing what I know now. I was just stuck on 5mg by my old respiratory team and left to it, had no idea of the risks, it was only my new team who tested my cortisol that this was uncovered. They don't seem to realise that we have enough to cope with having one life-threatening illness in asthma, we don't need another one!

hilary39 profile image
hilary39 in reply to ccccc

Totally agree. In spite of dozens of doctors giving me courses of prednisone over the past two decades, I only learned about adrenal insufficiency after I developed it and landed in the hospital with an adrenal crisis. There are lots of good posts on this in the archives (search for 'adrenal insufficiency' or 'Addison's').

A few big things for when you start taking HC--it burns off more quickly than pred so dosing it throughout the day to mimic your circadian rhythm is very helpful. I take 10 mg at 830 am 5 mg at 1230 pm and 5 mg at 330 pm. You should also keep some paperwork on you that says you are steroid-dependent and if this goes on for a few months, get a 100 mg injection kit so you can self-administer a big dose of HC if you have any symptoms of a pending adrenal crisis--extreme fatigue, nausea, vomiting, feeling really out of it (you will know!) If you feel that coming on at all, get to emergency care asap and be prepared to bring documentation of your illness, current HC regime etc.

I say all this just as a precaution. I have had the one crisis and several near-crises from things as seemingly innocuous as having a virus, jet lag, getting a mild concussion, drinking a liter of water to prepare for an xray scan and so on.

It's a v complicated condition since your adrenals regulate potassium, sodium, insulin, and water retention in addition to producing crucial stress chemicals like adrenaline and cortisol which also keep our organs functioning.

It's further complicated by the fact that a lot of endos know very little about the condition (GPs too) so you have to do way more self-advocating than with asthma. I've learned 99% about how to cope with my AI (induced by prednisone and steroid inhalers) from an AI support group and reading articles and experimenting with different things (e.g. taking electrolytes, trying my HC at different times of the day).

Let me know if you have any questions, I'm happy to help!

Take good care.

thanks Hilary, and sorry to hear about your hospital experience, I feel very lucky that didn't happen to me when I stopped taking it before I knew about AI. I have a GP appointment (lucky me!) next week to discuss switching to HC so fingers crossed she knows what I'm talking about...!

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