Adrenaline gland function

what blue card?.....that's new to me

Yes, what is the blkue card?  I haven't heard of it.

Here in the uk if you are on steroids for more than 3 weeks you should carry the blue card with you , the card is in case you have an accident and it tells anyone who is treating you that you are taking steroids it is very important that you do not suddenly stop taking steroids .

I asked my doctor if I could have an ACTH test after my 2nd attempt at reaching 5 mgs and then a quite nasty flare.  He said "there is no reason to have one"!  He's usually soooo good so I couldn't understand it.

Is there any reason why one shouldn't have this test?

I've had 2 more attempts to get below 5 mgs with no luck!😒

How are you? Hope you are in good health.

In my cynical opinion...money is the reason, Gp`s are testing only when they have to...not when we request it I have found....and others have too+

" we had not expected that as I was still on 2mg"

Which suggests your docs aren't very good at endocrinology! The synacthen test actually shows if your adrenal glands are CAPABLE of producing cortisol, not whether they are currently doing so. In fact, if you were down to 2mg without feeling VERY VERY tired it was a sign that they were working enough to keep you functioning.

Your body requires about the equivalent of 7mg corticosteroid of some sort to function - while you are above 7mg pred dose it is enough to cover day to day processes but you might need a boost if you are subject to major trauma or infection which is the reason for the instructions from some doctors to increase the dose in such cases, surgery or so on.

Below 7mg your body starts to produce its own corticosteroid, cortisol. You would start to realise it wasn't at about 5mg if it were producing none or later if it was managing a bit but not the correct amount. The dose plus your adrenal production must amount to 7mg-ish. The first thing that you would notice is increasing tiredness as you reduce the PMR/GCA pred dose rather than starting to feel better as you would expect. That should be a sign to a good doctor to check your adrenal function with the synacthen or ACTH stimulation test.

Trouble is they either don't understand it or they think you must be off pred altogether to do it - which is not true and it would be a bit late by the time you'd stopped pred with no endogenous production of cortisol. The results for a patient on pred are simply read differently, the numbers you are looking for are different.

Having a flare at 5mg and your adrenals not working are two different things. A flare is a return of the symptoms and shows the PMR hasn't gone into remission. Needing pred for adrenal insufficiency is something different.

But his "there's no reason" is a common attitude amongst non- endocrinologists - it is a VERY complex field.

Have you any idea how much it would cost to go 'private'?  I don't suppose it would break the bank!😏

My rheumy said to me last August when I was on 10mg, to come back to me when you are at 5mg, but have this blood test first (she handed me a form for it) don`t take the steroids until after the blood test.. she mentioned my adrenal glands,.so what would that show her?

Where? In Germany? Or the UK?

In the UK it very much depends on the doctor - it can be anything upwards of £150 and you have all the tests to pay too unless the private doctor also works NHS in which case they will sometimes get the GP to get tests done or they put you on their NHS list. I was quoted £250-ish for a rheumy in the north of England so I didn't bother!

Here in Suedtirol a private consultation can be as little as 70 euros for each appointment. Again, it depends on the doctor. They will always tell you if you ask.

That is very probably a synacthen test.

You don't take pred for 24 hours before the test - i.e. you take it the day before the test but not on the morning of the test. Usually it is done at 9am and they take a blood sample to get a baseline level of cortisol, then give you an injection and take another blood sample a bit later to see if the injection stimulated your adrenals and they were able to produce more cortisol. If they did - they're working, if they didn't or the level is lower than it should be they aren't working properly.

Is it to be done at the GP or have you to go to the hospital? Honestly - talk about optimism, handing out a request form in August when someone may take a year to get to the stipulated dose! I don't think the forms are valid forever! Prescription forms certainly aren't.

I am to have it done at the hospital...I am looking at it now the form....the tests are for...UEs,FBC2,ESR,CORT,LFT,CRP in brackets (C0809) =yes what ever that means?  You`re right again, she has written it is to be done at 9am....well there`ll be a long wait...how I`m struggling to get from 13mg because of so much pain!....

She's included cortisol (CORT) as one of a whole range of fairly standard tests. That won't actually tell her if your adrenal glands are working, it is just the basal level I mentioned, unless the CO809 is the hospital code for the short synacthen test.

The rest of it should be being done every few months by your GP.

What hospital do you go to? I could have a hunt round...

Norfolk and Norwich (N&N).....

Did have standard tests ESR etc...few weeks ago and receptionist said "normal"  when I rang.....doctor didn`t mention anything yesterday, when she gave me streoid injection, so.........

I suppose  could ring the hospital to find out what the code means, but I`m a hell of a long way off having the test anyway, (13mg) I am waiting for appointment for Rheumy, doctor said yeaterday to try DMARD`s but couldn`t prescribe with out me seeing Rheumy first, when I see her, I`ll ask if the form is still relevent!.....and so it goes on!....

Under the circumstances - I hope your GP emphasised you need to be seen sooner rather than later! Given the problems I don't see you being on 5mg by August anyway! Do you have an appointment in August or do they send one out shortly before? yOu could ring and ask it to be brought forward if you don't hear quickly.

Actually - I thought it has to be the hospital doctor who prescribes the DMARD

Hope I haven`t confused things...it was last August I saw rheumy, who said as was I leaving and handing me the form.....I`ll see you next when you`re at 5mg...and  have this test done before taking the pred.... and I`ll see you after the results....I was mumbling to myself as I was leaving you`ll have a long wait then, but as it happens with feeling as I am....it won`t be long! (to discuss going on DMARD`s)....

There's nothing like this where I live (Canadian province) so i got a medical aid bracelet - which is really good' actually, because it includes an online service where you can enter all your health information and keep it updated, the pin is on the bracelet so any first responder could access it if you were in an accident or something.

That's what I understood 

I still don't understand this adrenals thing!! 😒 If your adrenals are producing the equivalent of 7 mgs do you have to continue taking the pred?. Is there any way at all of knowing whether you are having a flare or whether your symptoms are adrenals related?

I have not had so much pain recently (thank goodness), but I am excessively tired and sometimes dizzy.  I've reached 6 mgs again (hoping to reduce to the dreaded 5 mgs next week).  Keep your fingers crossed for me, please.

I honestly think that you need to have an adrenal function test - but I know your doctor isn't a "believer". The excessive fatigue and dizziness could well be poor adrenal function when you need a bit of extra cortisol and you can't tell without the test. Can you go to an endocrinologist?

And no - I don't really understand the relationship either - endocrinology always made my head ache at university! .

But if your adrenals are working, when you need a bit extra they will produce it. If they aren't you won't. The 7mg is a baseline, it has dealt with the inflammation but is still present in the body for some time for the body to make use of so above that it isn't a problem, Below, and no top-up available then you start to feel unwell if you get into a situation where a bit more would be needed.

Oops, forgot: The symptoms are a bit different - a flare is pain and stiffness. Poor adrenal function leads to very excessive fatigue so the fatigue getting worse as you reduce below about 8mg is a sign that that may be the problem. A flare is PMR symptoms as well as tiredness.

There are other signs - the same as for Addison's disease:

"Addisons disease is a rare endocrine, or hormonal disorder that affects about 1 in 100,000 people. It occurs in all age groups and afflicts men and women equally. The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and non-exposed parts of the body."

But feeling unwell, nausea, weakness should send you to a doctor to get checked out. That is the reason for carrying a card or something saying you have been on long term pred in the recent past - it can still happen for a year or so after stopping pred altogether. Paramedics are trained to identify the signs in anyone recently/still on a low dose of pred - and they give an injection and take them to hospital to be sure.

A couple of ladies on another forum ended up in hospital recently with suspected adrenal crises - they probably in fact had a severe flu that was going around but the doctors first thought was a crisis because of their long term use of pred. It is quite possible though that it WAS lack of cortisol - due to the stress of the infection.