Adrenaline insufficiency. Anyone else?

[Italian321]

Just been diagnosed with adrenaline insufficiency I’m waiting to see the endocrinologist. My rheumatologist has referred me im not sure exactly what I should do in the meantime. I was on 5 mg prednisolone but still had fatigue. I’ve upped it to 6 mg. Wondered if there’s anything else I could do. Love and best wishes to everyone.

[SnazzyD]

Do you mean diagnosed by symptoms or testing? It can be a very rough time while the adrenal system starts to work. Unfortunately above 5mg isn’t really low enough to properly test it because it can still be too much Pred for one’s adrenal system to realise its time to start. This is why one has to reduce really slowly here (me 0.5mg per 6-8 weeks) and even then the fatigue and lack of well being can be tough. My Endo wouldn’t entertain doing a Synacthen test until I was down to at least 4mg. By about 3mg I felt much better but getting there meant I had to take it very easy.

[PMRpro Ambassador]

It is really called adrenal insufficiency - not adrenaline Though I suppose that it comes to the same thing in the end: the adrenal glands aren't producing enough adrenaline to order in stress situations.

If you are on 6mg pred that is probably enough to keep you going until you see the endocrinologist - who is the expert. It is possible that the rheumy is't aware you can't get accurate results until you are at a lower dose of pred - only being on too little pred will stimulate the production of cortisol. It is a patience job I fear.

[Italian321 in reply to PMRpro]

Thank you for you help you’re always so knowledgeable. Yesterday I had a telephone consultation with the endocrinologist. I have been taking 25 mg of hydrocortisone still getting odd bouts fatigue but I think overall better than when I was on prednisone. Because when I had toothache with probably infection I increased to 30mg. I do wake up tired. He wants me to lower the hydrocortisone down to 20 mg. once the infection is not there. Sorry this isn’t making much sense. I find the whole thing quite scary when I had flareups Polymyalgia I increased the pred and carried on.I didn’t panic. now I know its A different condition I panic at the fatigue. I did in fact ask him what is my condition and he said Addison’s! my question is really, is secondary adrenal insufficiency the same as Addison? it would not sound so bad if I think it’s due to the steroids Does anyone know if more hydrocortisone would make one feel better or does it make you feel worse. Any advice at all would be so appreciated. I think the specialist although very kind was a little negative I felt really depressed after the call. It’s all very strange I did actually have a general anaesthetic last September when I was on 1.5 pred. without any crisis afterwards.Now I keep worrying that’s what I’m going to get. Perhaps it’s just the whole situation that’s getting me down a bit. Thank you everyone for all your messages they’re always so good to read even if it’s years later. As I’ve said before I’m 73 and had polymyalgia diagnosed in 2011. I didn’t worry before nothing as I am now. Best wishes to everyone stay safe God bless you all and thank you.

[PMRpro Ambassador in reply to Italian321]

Yes - in terms of the effects, secondary adrenal insufficiency is the same as Addison's - the difference is in the causes

hopkinsmedicine.org/health/...

addisons.org.au/secondary-a...

are a couple of easy to understand explanations.

Would more HC make you feel better? Do you mean in terms of the adrenal insufficiency or PMR?

The idea is always to find the best dose for you personally. You may have some level of production of cortisol - and then you probably need less HC to top it up. You may well need extra if ill or in other high stress situations and that's where the "sick days" instructions apply - but using HC instead of pred is to try to get your adrenal function to wake up on its own. It has a shorter life in the body and that pokes the system to produce cortisol itself more. So it is likely the endocrinologist will try you on a lower dose at intervals to try and get that to work - just like reducing pred for PMR.

Does that help?

[Italian321 in reply to PMRpro]

Thank you so much. Hope you stay well. I seem to remember you could be in Italy? My husband is Italian but we are here. His family have had problems there. Thank you again. The endocrinologist nurse is going to call me to do education? They’re going to prescribe the injection for emergencies. My rheumatologist discharged me, I think, she said it’s Not Polymyalgia anymore. I do have a lot of pain but it’s all in the head and the neck and the jaw from arthritis. All gets very confusing. Becomes a full-time job doesn’t it sorting out the Health. Hope you stay well. Thanks again for all the help you give everyone. X

[PMRpro Ambassador in reply to Italian321]

All the best - sounds as if you are being well looked after.

I wonder how she knows it isn't PMR any more - you can only really know when the patient is off pred and has no symptoms, unless you have imaging evidence of something else. My original rheumy told me 13 years ago I had osteoarthritis - it was due to PMR and there is still no sign of OA!

Yes, in Italy, in Alto Adige. Which has had Covid-19 but not very badly and the numbers are falling a lot now. The regional government is aiming to open up things faster than Rome wants to - we'll see. Haven't been allowed out of the village for weeks - maybe from May 4th I can legally go shopping in the next town! We have the biggest supermarket around in the village industrial estate but it is rather more Italian now than it was and we also use an Austrian-based company with a shop in town. Need the border to Austria to open again too - for English cheese ...

[piglette]

I have had adrenal fatigue although it is improving. You are lucky your doctors are interested, mine just shrugged when I asked him about it.

[Arflane97G in reply to piglette]

My GP and rheumatologist both said not to worry! You started on comparatively low dosage [15 mg] and are tapering slowly but at least the rheumatologist gave me an emergency number to ring if I was concerned - presumably this phone line is still being manned!

[piglette in reply to Arflane97G]

Perhaps my GP’s shrug meant not to worry!!

[Italian321 in reply to piglette]

How are you now I hope much better. X

[tangocharlie]

I was referred to an Endocrinologist when I had adrenal problems about 3 years ago. I had a couple of synacthen tests and was switched to hydrocortisone for a few months and meanwhile taken off Pred (I had got down to 4.5 or 4 I think). I remember feeling really really unwell, dizzy, low blood pressure, extreme fatigue, rapid weight loss, tearfulness. I had a 9am cortisol injection after about 3 months on HC, which showed levels had started to rise although were still low, so I was immediately signed off from endocrinology. I still don't know if they are working properly - it was just assumed if they had started working again that they would just sort themselves out, n o ongoign monitoring. When I felt unwell again last December and the symptoms felt the same I went to A&E and they just tested my electrolites and told me all was fine - no need for a synachthen test or anything. There doesn't seem to be any system of monitoring us post-Pred. I don't think any Doctor has thought it necessary despite research I've read on one of PMRPro's posts that adrenal fatigue is very common and for some people they never recover. I just hope it gets picked up if there is an emergency.

[Italian321 in reply to tangocharlie]

Hope things have improved. X

[Italian321]

thank you. . I was put on hydro Cortizone for two weeks before they did the test but I’m not sure what tests they did. Did you mean you feel better with less prednisolone. I’m so tired I’m tempted to increase the prednisone . Can’t get hold of anyone at the hospital over the phone to ask them exactly what I should take. I must say I increased it from 5 mg to 7 mg but don’t feel any better. Sorry I don’t know if that makes a lot of sense just so tired. Stuck at home self isolating as of the 70 but not got the energy to do anything which is a bit frustrating thanks again.

[Pollyanna16]

Hi having just replied to your message to me I have found this thread & see you have Addisons rather than Adrenal Insufficiency. It sounds like you are getting the emergency injection which is good. I suggest the ADSHG website as it has lots of useful info. Best wishes

[tangocharlie]

I was put on Hydrocortisone for a few months to tide me over and prevent Addison's type effects until the adrenals recovered, though I don't think they ever fully did.