I’m new here: I have been told that I have... - Thyroid UK

Thyroid UK
109,226 members126,879 posts

I’m new here

Why1me
Why1me

I have been told that I have adreanal insufficiency with a 9am cortisol level of 25 nmol/L that was not taking my prednisolone . I have taken prednisolone for severe asthma and they had been doing cortisol levels for quite a while so I am been referred to an endocrinologist in Leicester which provisionally in November but on Thursday I had a phone call to go over on Tuesday.

Not sure what will happen or what they may put me we did hunk I would get off steroids but I was having muscle pains dizziness and at moment been advised to increase steroids if cough injury etc . This is all new to me at the moment

9 Replies
oldestnewest

Oh my goodness that is a VERY low cortisol reading! At that time of day it should be nearer 400-500nmol/Ls It's no wonder you feel unwell! It's usual to be on both Hydrocortisone for the adrenal insufficiency & Prednisilone for your asthma. However if you become unwell in the next couple of days, ie diarrhoea & vomiting, feeling faint, dizzy, confused then go immediately to A&E & tell them you have Adrenal insufficiency it needs immediate treatment. If you are on Facebook then join the UK Addisons ifo & support group for much more hep than I can give. You're lucky Leicester is a very good unit for pituitary/adrenal problems. Good luck!

Why1me
Why1me
in reply to PaulineS

Thank you did not think that much till my last appointment at the asthma unit asked me for any symptoms once she had that result they increased my prednisolone but has told me it may well be changed so till I am seen in Leicester on Tuesday I will join the group once I have been seen I decided to go to Leicester because all my cortisol levels have been done there

Why1me
Why1me
in reply to PaulineS

Latest update from seeing the Endocrinologist yes you have a low cortisol level talking for half an hour about pharmalogical or physically dose of steroids I am on with inhaled steroid , that prednisolone and hydrocortisone were near enough the same. To stay on prednisolone

He did believe in doing loads of testing to confirm that. the respiratory team often panic they check to see if you are taking your steroids and could not see why I was referred?

I mentioned about the Synacthen test but he said no did not believe in doing it

I could go through trying to get my adreanal glad to kick in but we tried properly last time and it maybe would be the same again that I could not cope so had to decide that I would never get off steroids and be dependent on them I

I have to get a medi alert bracelet saying steroid dependent as well as steroid card

If unwell double up my steroids does not want to see me again leaving it to my asthma team

It was a dr G at Leicester

So not sure how I feel was it a pointless appointment nothing any different to before I went

PaulineS
PaulineS
in reply to Why1me

Umm that's a bit worrying that he has dismissed you & won't do a Synacthen test as it's the gold standard, it sounds as though he doesn;t know enough about it all. Really you should be on both prednisilone for your asthma & Hydrocortisone for you adrenal insufficiency. It shouldn't be left to your respiratory team who looks after you. Did he suggest that you needed an emergency injection to carry around with you? You really do need to have one in case of an emergency situation. You can get a medic alert bracelet from the id band company, I use a silicone one so I can wear it all the time. It might be worth asking to see another Endo Dr Trevor Howlett is anEndo there & on the board of the Pituitary Foundation, it's your right under the 2012 health & social care act to have a 2nd opinion. Have a look on the UK Addisons website as well for more advice.

Why1me
Why1me
in reply to PaulineS

Hi Pauline

Thanks for that I will have a word with my gp to see what they say maybe I should have gone local to me but I thought with all the results being there it would be better

I will carry my letter with me no he did not give me any injections

Why1me
Why1me
in reply to PaulineS

Hi Pauline

Today I received a letter from the consultant that I saw in his letter he put the following

There is no doubt about the endocrinology diagnosis here and that she understands that she has hypothalamic-pituitary-adreanal axis suppression. she believes that this is a permanent state of affairs and is happy to remain on a dose of prednisolone equivalant to physiological corticosteroid replacement. This is proberbly where she is at the minute.

She understands that she has to behave as if she is addisonian and carries a steroid card with her by way of communication and she now intends to get a medi alert bracelet as a belt and braces measures.

I do no think there is particular benefit in repeating measurements of cortisol here

I am copying the letter to the asthma unit so they can have a conversation which includes reference to this

If they want further appointment unless they request it

I am at clinic in September so see what they say I have to do now

PaulineS
PaulineS
in reply to Why1me

You still need an emergency injection to carry around with you - this is specified in the NICE guidelines.

Hi

It is a pity they only go the one test not the saliva one four times a day. Also you need to know where your dhea is as you’ve only half a picture and dhea makes a massive difference to your health if unresolved.

The meds you are on seem appropriate but I find it daft to test you off your meds as you need to know how effective they are.

There is also adrenavive which I found my patients responded to well instead of hydrocortisone. It’s natural and has less side effects. One of the side effects of all steroids is adrenal issues!!!

Do you monitor your temps? It’s a cheap and easy way to check thyroid and adrenal meds.

Why1me
Why1me
in reply to Howard39

I had to have cortisol level done early morning before I took my prednisolone for that day to give them a more accurate result.

I had my dose slightly increased of prednisolone until I am seen in clinic on Tuesday where I have been told it may be changed

Yes I do my temp if unwell but that is all

You may also like...