I'm wondering if anyone else with asthma has been diagnosed with Adrenal Insufficiency? (I have had late onset asthma for fifteen years now). The adrenal insufficiency came about subsequent to years of high dose steroid inhalers, and of prednisolone tablets for chest infection. I was diagnosed in August 23 after two years of extreme fatigue and then my cortisol level was found to be extremely low, and my adrenal glands were barely functional.
I have been on daily replacement hydrocortisone therapy since then, and it must not be stopped under any circumstances. My life has changed in so many ways, as everything has to be worked in around the timing of taking of tablets, as I'm unable to function physically or cognitively apart from them. I'm also at high risk if I get an infection so I need to avoid indoor social situations. Rather like in the Covid years!
I'd really like to hear with anyone else who is in the same situation.
I understand that Tertiary Addison Disease from steroid use, as opposed to Primary and Secondary, is now the fastest growing type of Addison's.
Thank you very much,
Caro
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Some12U
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I too have Tertiary Addison Disease from long term steroid use. I have rheumatoid arthritis and have taken prednisolone for about 16 years as well and a steroid inhaler since 2012. I am still taking steroids rather than hydrocortisone because the steroids are working for me.
Thank you for your reply. I'm sorry to hear that you have rheumatoid arthritis as well as asthma. Would it be Prednisolone you take rather than Hydrocortisone? It's good you find it's working for you. I'd be interested to know what dose you are taking. I take 20 mg hydrocortisone a day in divided doses, 10 mg, 5 mg, 5 mg.
Thank you for your reply. It sounds like early days for your diagnosis of Adrenal Insufficiency? How are you managing? Did they start you on a high dose of Hydrocortisone with a plan of cutting down as time went on, I wonder. That's what happened to me. I also use an alarm on my mobile phone to time the taking of the tablets. My energy goes up and down with them, rather like a roller coaster. I know this doesn't happen to everyone. I still have to plan my day carefully.
No.started on low.had sst begin jan but didn't get results til end of April = no cortisol.have had long wait for endo appointment .I'm hoping they're gd with AI as I'm pinning my hopes on them improving my qol
Your dose perhaps needs increasing. That's a long time to wait between the test in January and getting the results in April. I'm surprised.! Then another long wait for to see the endocrinologist to sort everything out. I've heard there aren't enough endocrinologists in some areas. They do say that the medication isn't a miracle. . I was warned that I could still get tired. I sincerely hope they can improve your quality of life.
Do you know about the ADSHG, the Addison's Self Help Group? I've found it very helpful and informative. addisonsdisease.org.uk
I think that's what happens. And we have to become our own advocate, as one G.P. advised me. The best support we receive may be on patient forums. Nice folks, understanding, and often also very well informed.
Yes.ive found people on forums and adshg very helpful.im pinning my hopes on endo being able to improve my condition currently. Yes troughs × peaks at times for me too.id been waking with very bad sweats in nt + morning of late.as I've been ill,my hc mustve been used up - I've found taking sm dose b4 bed + in night has stopped it .we live+ learn x
I've had sweating when I'm running low on cortisol, such as taking a tablet late. One of the symptoms of low cortisol. Live and learn indeed! We find taking a little extra often is what's needed sometimes. When ill, advised of course to increase H.C. according to the Sick Day Rules. Hopefully you were given them.
I was given sick day rules by a member + adshg.im glad it's not just me! It's a minefield.without self educating myself and adshg,here+ fb group,I'd be on my own.im hoping 1st appointment endo sees them able to help me live,better than this year..better thn last few years x
I find it extraordinary that you weren't advised of the Sick Day Rules, e.g. the need to double up hydrocortisone when ill with an infection. I needed to wait to see the consultant for four months after the SS test, but I had a phone call with doctor from the endocrinology department who explained the SDR's and I was also instructed by a nurse in the use of a hydrocortisone hypodermic for emergency use. It makes you wonder if you were let down. X
Told nothing.had undetectable baseline cortisol jan 4 24 - didn't get told til I asked end of April when I was coincidentally ill with deep lung infection/ ?pneumonia.put on 20mg by respiratory,who panicked& referred me to endocrinology-6 moths wait so haven't seen them yet!I,myself told gp bout sick day rules+ need for more hc,and stock.had NO medical input except a curve test while downloading.no advice,no other tests on adrenal hormones,nothing relevant,nothing.found my way thro with research and forums.dont have injection kit even
Thank you! x Basically the symptoms are tremendous exhaustion, and brain fog. Also becoming prone to infections which can be severe, even life threatening if the adrenal sufficiency isn't recognised and treated.
Cortisol is not tested for very often, as it is quite rare to have Adrenal Insufficiency. A high index of suspicion would be required by a doctor before they did the test. When I was diagnosed I was told by my G.P. practice that most of the doctors would not have seen it before. It does happen in long term steroid takers though, increasingly.
Synthetic steroids can cause the adrenal glands to stop producing cortisol, which can lead to adrenal insufficiency. This can happen when steroids are stopped suddenly or weaned too quickly.
How common it is
Adrenal insufficiency is the most common side effect of corticosteroid use.
How serious it is
Adrenal insufficiency can be life-threatening and can lead to adrenal crisis. Symptoms of adrenal crisis include severe dehydration, hypotension, and altered consciousness.
How long it lasts
The risk of adrenal insufficiency can last for up to 12 months after stopping steroid treatment.
Thank you for posting some information. I perhaps should have included an informational link.
Most usually, synthetic steroids at high doses lead to adrenal insufficiency after long term continuous use, often due to asthma, due to suppression of normal cortisol production. Stopping steroids though has to be managed very carefully. A.I. is still not common, according to what I read, and to what my doctors told me.
My adrenal function is about 5%. Instead of hydrocortisone, you can take a suitable dose of prednisone instead, first thing. I was treated at the local hospital for AI for about 10yrs but wasn’t happy with my care. As soon as I swapped to a London hospital, I was told latest thinking is prednisone works better. Unlike the local endo, this one bothered to do blood tests to find out exactly what my optimum dose was. So now I’m taking just 4mg daily & it’s fine.
As you’ll know, our cardiac function & other organs fail without cortisol, so it’s VITAL you follow the sick day rules. But when you’re ill it’s easy to forget, so get a relative to remind you every time. An Addisonian crisis can be fatal and, as I know to my cost, you rapidly lose the mental acuity to realise what’s happening & can slip into unconsciousness before you know it
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