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Anyone been diagnosed with adrenal Deficiency after 19 days of steroids

McMD profile image

I was admitted into hospital via a&e with a sever asthma attack was given 100mls of ive steroids three times a day for three days then oral of 50mg tapering down over ten days at home but instead f recovering I was feeling extremely fatigued after 10 days I had bloods taken and was found to have cortisol level of 33 and told to go straight to a&e where I was tested for adrenal function which showed I have adrenal deficiency and have been put on 20 mg of steroids for life and must be very careful of getting infection. Im a bit concerned about this diagnosis has anyone got a similar story.

Many thanks,

Mary

11 Replies

Hi So I went hospital similar things happened to me. And they were saying to start steroids as well. However they didn’t because they realised the blood test was taken at the wrong time in the day and the other test I did previously showed a normal level. Maybe have them look into again. Just to double check as the dr was working in haste and it was his senor dr who said no the test result would be low due to the time they took the blood.

Hope that helps

Lysistrata profile image
LysistrataCommunity Ambassador

Hi Mary,

I got adrenal insufficiency (AI) from longer term use of oral steroids, but have now recovered - it is possible when AI is steroid-induced that it may not be for life, though it will be for some people.

Just to check, are you still on steroids for asthma? And is that 20mg of steroids prednisone/prednisolone, or hydrocortisone tablets? Pred is about 4x stronger than hydrocortisone so 20mg hydro=5mg pred. Asthma steroids are separate but you should not generally be on 20mg of pred as a normal daily dose for your adrenals, it's 4x more than you need for a baseline dose!

You might find this post I wrote useful - not everything will be relevant to you but at least some of it should be, and it should be useful for background and for learning about sick days and adrenal insufficiency with asthma: healthunlocked.com/asthmauk...

I would strongly recommend asking to see an endocrinology specialist or specialist nurse, if you haven't already. This is quite a specialised area and I find other specialities can often not understand it properly and not give the best advice always. In particular, they may not understand how important timing is: Little Mix is right that the timing the blood is taken is important and results should be looked at with that in mind.I've also had several doctors not know/understand what I mentioned above that hydro and pred doses are not equivalent.

If you don't have any specialist advice, or you're waiting for an appointment, you could call this helpline to speak to a specialist endocrine nurse: pituitary.org.uk/about-us/c...

Hanne62 profile image
Hanne62 in reply to Lysistrata

So glad to read you recovered! I didn’t know that. Well done 👏🏻 👏🏻👏🏻

Lysistrata profile image
LysistrataCommunity Ambassador in reply to Hanne62

Thanks! Not that I really did much for it lol. I think it's one area where it helps to not be steroid-respondent for asthma. If I were more 'normal' I'd have been getting a lot more steroids for that and it would have kept messing up the adrenals. As it is, I don't bother with pred when I have flares because it doesn't do much (note for anyone else reading: I do this because I have seen specialists and it works for me. Don't experiment with stopping pred by yourself or think that you don't need it unless that has been properly confirmed. Even my steroid-hating consultant doesn't advise that.)

Hanne62 profile image
Hanne62 in reply to Lysistrata

How strange, I’m the same! Unless I take 50mg+ it doesn’t touch my asthma, and even at that dose it’s not great. But I was on a maintenance dose, to boost anti-fungal, for years because of aspergillosis 🤷‍♀️

Sorry, McMD, I didn’t intend to hijack your post.

As you’ll see, I was on a low dose of pred for years before I developed AI & had to go on replacement therapy “for life”. Even then the endocrinologist thought it was worth trying to “wake them up” by slowly reducing the hydrocortisone. He said it was very unlikely to work because I was on antifungals at the time (which also suppress the cortisol production.) Also, my output was pathetic at 2-5%. Unfortunately he was right.

But in your case, such a relatively short, sharp shock to your adrenals, I would’ve thought there was a good chance they’d recover?

I’ve found even some registrar endos don’t “get” AI. The only people who’ve really talked sense are a consultant at the Chel&West and the specialist nurse on the Pituitary Foundation helpline (she’s GREAT!) 0117 370 1317 Mon-Wed am

I would of thought unlikely after that time frame . I was on 25mg/30mg daily for 5 years and I have adrenal insufficiency and am now steroid dependent

Thank you for your informative reply I had the ACTH stimulation test done and my adrenal output went from 70 to 180 but then dropped again I did get to see an Endocrinologist who put me on 40mg of hydrocortisone for 3 days and then 20mg from then on Ive a visit with him next week and hes going to check levels again. He will also have the results of my pituitary gland test. I have an intertegral morphine pump and recieve 8.8ml directly into my spinal cord as I suffer from chronic nerve pain I wondered if this could have an effect on my cortisone levels but none of the Dr's seemed to think so. They put it down to the 100ml ive steroids for 3 days followed by 50mg tapering of over the next 16 days Im hopeful after reading replies that things could return back to normal. Thanks again for replying.

four4 profile image
four4 in reply to McMD

Morphine is a known cause to adrenal suppression, it is reasonable to hv steriod supplement as long as u are using morphine in the long term.

Oh dear, I'm so sorry to hear this. I am SAI myself after too much prednisone use for asthma. There are a bunch of great threads on this topic in the archive if you search 'adrenal insufficiency'. A few major points: be sure you keep a card in your wallet that says you are adrenal insufficient in case you have a crisis--the hospital or doctors should give you 100 mg of hydrocortisone (HC) and a sodium saline solution immediately; wear a medical ID bracelet that lists your condition as steroid-dependent; get a prescription for an emergency injection of 100 mg of HC to keep on you in case you have an adrenal crisis; break your doses up according to our circadian rhythm (I'm including a link with info on that below)--I do three doses a day, 10 mg at 830 am, 5 mg at 1230 pm 5 mg at 330 pm but different times work for different people

Let us know what other questions we can answer! A lot of us on here have SAI.

cahisus.co.uk/pdf/CIRCADIAN...

Thank you this is new to me especially as my asthma hadn’t caused me much trouble for over 20 years! I was also diagnosed with combined sleep apnea earlier this year and now SAI. I’ve been on the hydrocortisone for 3 days but I’m still feeling very fatigued does it take awhile before your energy levels return.

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