Adrenal Insufficiency?

Hello,

I know a lot of us on here are steroid-dependent for asthma control, but I was wondering if anyone else had become completely steroid dependent physiologically?

I had the short synacthen test, and the results were bad. I then had the long synacthen test, and as a result of that, i've been told that my adrenal glands have stopped working and it really doesn't look as though they can be restarted.

I've now got to start hydrocortisone to replace the steroid my body is no longer producing, and for now I will also stay on pred to control the asthma.

Has anyone else had this? It doesn't seem that common to need an additional steroid to counteract the side effects of the first.

xx

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Thankyou so much! I thought I was the only one. I have been on prednisolone for 10 years. I have recently been able to reduce it as my asthma is more controlled, though I still need nebs and pred when I am unwell. I got down to 5mg of pred and had a short synacthen test. My adrenals didnt respond atall. They then did another one over a longer period of time and the result was the same. I am now on 3mg and abou to go into hospital to have them weaned down to 0mg. They want to stop them to see if this will kick start my adrenals into action. They will then repeat the short synacthen test in hospital. If the results are the same as before then I will need to be on steroids every day, regardless of my asthma and will need to learn how to increase them etc if I'm not well. I am do worried about this. I have spent so much time in hospital with my asthma and really felt like I was turning a corner. Now it seems that the steroids have probably caused long term effects on my body which I was unaware of. I had not choice at the time. The steroids have probably saved my life on many occasions. I do feel let down though, that I am having to go through all of these complications. My consultant says adrenal insufficiency can be very serious so I am very anxious at the moment. I just want to get these tests done and find out for sure.

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HI Carrie, my son christopher 10 now has adreanal surpression.

They have not done the long test yet though.

He has brittle asthma , and just back out of hospital AGAIN

Ann

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Thank you for all your replies.

It does seem relatively unusual, and yes, it is quite scary! Having had the appointment with the endocrinologist, I then had a follow-up with my GP who explained again, more clearly, what this actually means it terms of day to day living. Most importantly, if sick and unable to keep the steroids down, there is basically no alternative but to go to A&E for IV steroids and fluid. If you leave it, eventually you could fall into a coma. It seemed quite overwhelming initially - a whole new set of rules to learn to live by - but I suppose it is just like everything else and once you've adjusted and learnt what you can do and what you can't, things will be fine.

Karly - hope the hospital can get you off the last of the pred and that you get some good news. If not, please don't let your consultant scare you. From what I understand, it is serious, but only if you don't control it.

Annie - sorry to hear your son has been in hospital again. Hope he is feeling a bit better now.

xx

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Thanks. I'm going in for tests in 2 weeks so hopefully we will get to the bottom of this. It's taken ages because they keep testing me on various levels of prednisolone and then looking at the results. I had been stopping my prednisolone 2 days before each test. The endocrinologist says that I should be on no prednisolone for for at least a week before the test so that he can be sure that any cortisone appearing on the results is my own and not due to the tablets. Got my fingers crossed but because I've been on steroids for 10 years I think I have to be realistic. I know my chances of having normal adrenal function are quite low and the previous tests havent been encouraging either. Will have to wait and see.

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Addison's disease website

Hi Carrie, Karly, I'm so sorry that you are having to go through all that as well as the usual asthma rubbish!

Just wanted to mention that there is an excellent Addison's disease website at adshg.org.uk which gives loads of information about dealing with adrenal insufficiency, how to manage emergencies etc, and also produces a wallet card and an 'Owner's Manual' that you can send away for.

Bear in mind, though, that whilst most of the info is generally applicable to both primary and secondary adrenal insufficiency, most of the people on the website suffer from Addison's itself - primary (autoimmune) adrenal insufficiency - so some of the information won't be entirely relevent, especially regarding susceptibility to other auto-immune diseases such as thyroid disease, diabetes etc. Also, of course, bear in mind that self-help group websites and patient forums in general (as with this site!) tend to attract the more severely affected sufferers, so don't be too unnerved by some of the stories on there, it's not always that severe!

I have a friend who has Addison's and apart from having to have an extra shot of steroid at the births of both her children it's never stopped her doing anything! As you say, it seems to be a case of knowing the rules and being careful more than anything.

Definately one to put on the Medic Alert bracelet though I'd have thought!

Good luck and hope this helps

Em H