Adrenal Insufficiency and reducing steroid inhaler

[Kodimp]

Hi,I was diagnosed with adrenal insufficiency last year and have been stable on 20mg of hydrocortisone. My respiratory consultant has reduced me from 2 puffs twice a day of 160 Alvesco to 3 puffs once a day. Now I'm feeling unwell. Could the reduction in my inhaler be impacting my adrenal insuffiency?

[Patk1]

I would ring Yr consultants secretary to tell thm how the regime change is affecting u.im on 2puffs twice a day plus fostair 2puffs twice a day,on mart too.I'm being investigated for ths due to many symptoms of it. Can I ask what tests u had to diagnose it

[Ortho10 in reply to Patk1]

Test is called the Short synacthen test.

[Patk1 in reply to Ortho10]

I've had that one x

[Kodimp in reply to Patk1]

HiI had a random cortisol test done first which was very low,. Gp suggested repeating in a few weeks early morning which was still low. Sent me to Resp Dr's who repeated it again and it was still low.. he started me on 5mg of pred a day and sent me to endocrinology who did a short synacthen test which confirmed the diagnosis. I've been on 20mg of hydrocortisone for a year now. Repeat synacthen test levels are better but still not responding adequately. After the diagnosis resp dr changed my inhaler to a more adrenal friendly one which has helped improve my levels. The goal was to reduce the dosage now my asthma is in a better place and hopefully see a better response from my adrenals too.

[Poobah in reply to Kodimp]

Definitely let the resp Dr know that the reduced inhaler dose isn't working for you. They have stepped down your treatment after a period of good asthma control, but if symptoms worsen the idea is to step back up the level of treatment to what works. It is a balancing act for sure, but never hesitate to alert your Dr if any treatment fails to control your symptoms adequately.

[Patk1 in reply to Kodimp]

Had u severe exhaustion pre treatment? I'm struggling

[Kodimp in reply to Patk1]

Before I was diagnosed it felt like I couldn't wake up in the morning. Alarm on snooze and I kept falling back asleep. During the days my body felt like it was jittery and it was hard to function. My cortisolwas 26 at that time. In the lead up to that point I found I didn't have the same ability to deal with stress particularly at work. Retrospectively I noticed things like my body hair had stopped growing and that certain activities had become more difficult and took more out of me and that I had a lot of joint pain. All this settles on the right dose

[hilary39]

You're still on 20 mg of HC a day right?

[Kodimp in reply to hilary39]

Yes, asthma control is good it's the adrenal insufficiency is a problem

[hilary39 in reply to Kodimp]

I have SAI too. I have been on the same dosage of inhalers since I developed it though so I can't answer personally whether a drop in the dose could cause symptoms. 20 mg a day should be sufficient to replace your cortisol but it's an interesting and very possible hypothesis that dropping the dose of a steroid inhaler could give you low cortisol symptoms.

Are you feeling more tired than normal? Nauseous?

[Kodimp in reply to hilary39]

Very fatigued particularly after activities. Nauseated, achy and hard to wake up.

[hilary39 in reply to Kodimp]

Can you get in to see your endo? Have you tried updosing at all? If so, did it help?

[PattyT22 in reply to Kodimp]

I have had AI for 2 years since covid and have severe eosinophilic asthma. I started on pred for the AI and then moved to hydro, I am very fatigued on what they consider functional dose of 5 and 20 so was put on 10 and 25 depending on which one on at time. I’ve gone back to pred after an acute crisis at Xmas as the hydro didn’t agree with me and manage much better with prednisolone. Good luck it is complete trial and error

[Kodimp in reply to PattyT22]

Thank you. I agree its triall and error. I find I have to take more for some exercise or I have significant joint pain but Dr's say I only need to updose if I am doing a marathon....

[Kodimp]

Can't see endo till April. Was just wondering had anyone else experienced it. Might go back on old dose until endo review

[WelshHartleys]

May I ask what your symptoms have been for adrenal insufficiency please? How did you or the doctors work it out? I was on sereflo 250mg for over a year and 4 puffs twice daily as couldn't seem to come down off it without coughing qnd struggling with what I thought was my asthma. It got changed to fostair 200mg x2 puffs twice daily in Jan and I have been struggling since, both with asthma and general symptoms. I lost my appetite sometime in Feb and a lot of weight, over two stone without even trying. I have no interest in food. I periodically have the shivers. Once bad enough I called an ambulance as thought I had sepsis. When my asthma flared they found low sodium levels and got those back up by keeping me in hospital for over a week on restricted fluid intake. After that I ended up back in a&e and then onto respiratory ward to sort asthma. Started on oral steroids and they helped. I am tapering off them and have started to see a return in my shortness of breath. I have had diahrea yesterday as I tried to lower my fostair as it has been giving me palpitations. It helped with the palpitations but brought on diahreaa and I started to feel off, then later like i was about start sweating. I am unable to do much without pulse racing through the roof. I have been trying to do more by increasing my activity levels but find as coming down off the pred my struggling with breathing is happening again. Like it was before I started on the pred. Sorry. Doc said inhalers can't cause it. J spoke to one yesterday. I feel like I have a huge fight to try and prove it. Or try and get them to prove me otherwise.

[JumpJiving in reply to WelshHartleys]

WelshHartleys - In my layperson's opinion as somebody with diagnosed adrenal insufficiency believed to be caused by steroid-based asthma inhalers, I would be concerned that you are tapering off your oral steroids without a proper diagnosis in place. I would suggest that you need a 9AM cortisol test and if that is low a short synacthen test. Other blood tests would then follow. If you have adrenal insufficiency, the other blood tests would help identify the cause. Note that low sodium levels are a symptom of primary (Addison's) adrenal insufficiency (see addisonsdisease.org.uk/what... ), although I had massive salt cravings prior to diagnosis, yet they reckon mine is steroid-induced from inhaler use.