Diagnosed with Adrenal Insuffiency subsequent to many years of prescription steroids for asthma. (Tertiary Addison Disease)

[Some12U]

Hello,

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

[helenlw7]

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.

[Some12U in reply to helenlw7]

Hi Helen,

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.

All the best.

[helenlw7 in reply to Some12U]

I am on Prednisolone, 7.5mg a day. The consultant thought I might as well stay on the steroids because they work for me.

[Some12U in reply to helenlw7]

That makes sense, as you were already taking that particular steroid every day. It's equivalent to the hydrocortisone that I take.

[Patk1]

I've AI too,don't know what type yet.im on hydrocortisone.i set alarms on my phone to remind me

[Some12U in reply to Patk1]

Hi Patk1,

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.

All the best.

[Patk1 in reply to Some12U]

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

[Some12U in reply to Patk1]

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

[Patk1 in reply to Some12U]

Yes I joined it some time back,thanku.ive just been left to learn about it myself.

[Some12U in reply to Patk1]

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.

Wishing you all the very best.

[Patk1 in reply to Some12U]

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

[Some12U in reply to Patk1]

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.

[Patk1 in reply to Some12U]

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

[Some12U in reply to Patk1]

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

[Patk1 in reply to Some12U]

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 downdosing.no advice,no other tests on adrenal hormones,nothing relevant,nothing.found my way thro with research and forums.dont have injection kit even

I'm in the year frm hell

[Some12U in reply to Patk1]

I'm so sorry to hear of your truly awful year!! It beggars belief. It seems that your diagnosis was all backwards. At least I think you had a cortisol day curve test.

Thank goodness you don't have long to wait now until your consultant's appointment. You absolutely should have a home injection kit in case you became suddenly severely ill again. Of course you'd know you or someone else can call 999 for an ambulance if necessary. As another member on this thread was saying, it can happen very quickly. In fact I was recently taken into A&E, due to a chest infection, and I was given an injection of 100 mg HC in the ambulance on the way. Great Scottish ambulance service and brilliant paramedics.

Do take care X

[Patk1 in reply to Some12U]

Yes I have been let down but pinning hopes on appointment being worthwhile!+ consultant efficient f2f 🤞 as o want some qol back.its reassuring that some areas r as gd as yours x

[Some12U in reply to Patk1]

Fingers crossed for you that you get the support you are entitled to. x

[Yumz199725]

Wow I've never heard of this before I'm so sorry to hear x can I ask what the symptoms are for this??

[Some12U in reply to Yumz199725]

Hi Yumz,

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.

[Yumz199725 in reply to Some12U]

This sounds like me to be honest accept the life threatening stuff x how do I go about trying to get tested for this??

[Some12U in reply to Yumz199725]

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.

[Patk1 in reply to Yumz199725]

It's an overwhelming exhaustion,loss of appetite,weight loss,going off meat × other foods,severe sweats,dizziness,weak,cognitive decline, loss of motivation ,no energy and the list goes on

[Timberman]

For the benefit of all I found this on Google:

Yes, steroid use can cause adrenal insufficiency:

How it happens

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.

[Some12U in reply to Timberman]

Hi Timberman,

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.

addisonsdisease.org.uk

[janedivney]

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

[Some12U]

Hi Janedivney,

That's marvellous you have good support from your London hospital. I also attend a major teaching hospital, but I've only had one consultant's visit so far.. I think it was said it's better to take Hydrocortisone than Prednisolone as it's closest to the body's own cortisol, however I'd be keen take whatever works best. I'm due another visit next month. I would need 8 mg Prednisolone equivalent though.

I totally agree about sick day rules, essential to swiftly double up medication when ill . Indeed without it we can progress quickly to feeling very poorly indeed and unable to function, though this hasn't happened to me. A good idea to tell family or a friend that you are feeling ill, and that they know to check on you.

I'm sorry to hear that you experienced an Addisonian crisis. I suppose having had A.I. ten years, it might be expected sometime? Not a great prospect!

[janedivney in reply to Some12U]

I’ve had problems with drs whose knowledge of AI is sketchy (most of them!) telling me I don’t need to double up, even in circs where actually they should be giving me 100mg by injection! I’d had day surgery & started vomiting & feeling weak that same evening - next day I became unresponsive & my husband called 999. Tg I wasn’t alone! I told my endo consultant & she supplied me with a letter to be given to any dr treating me. Needless to say I’m now very vigilant & insist the AI is taken seriously.

I hope you can swap to pred. It’s so much easier to take one dose first thing & not have to set phone alarms. I was always forgetting. We have enough to do without all that

[Some12U]

Goodness! That was a scary episode. As you say, one has to insist on being taken seriously. As one Dr said to me, "you have to become your own advocate".

I'll certainly be talking to the endo consultant about Prednisolone, thanks.