How will I know whether adrenals are functioning?

[cribbager]

With the great and ongoing help of this terrific forum I have so far had a smooth journey on pred and am down to one and a half mg, about to reduce further. A bit tired but otherwise absolutely fine. Do I just continue gradual reduction and assume adrenals are catching up? Huge thank you for your advice and support thus far

[DorsetLady PMRGCAuk volunteer]

Sounds as if adrenals are working to a certain degree otherwise you’d feel really rubbish!

Just keep tapering very gently (using one of the slower tapers we talk about) - but do be aware of a couple of things -

If you are a stressful situation as they are not working 100% you might find it a bit difficult - and

Even after coming off Pred completely it can take between 6-12 for adrenal function to be back to normal.

So have some spare Pred on you, just in case required.

Link re all things adrenals - just so you are aware -

healthunlocked.com/pmrgcauk...

[cribbager in reply to DorsetLady]

Thank you - prompt and helpful as ever...very grateful

[PMRpro Ambassador]

Nothing to add to DL's reply except to reinforce that you shouldn't be surprised if any stress - even paperwork or arranging to do things leaves you shaking and something apparently simple and straightforward that is a bit long can be too much without a long rest.

And if you feel really unwell in such a situation - take a bit extra pred and seek medical advice if you feel really unwell.

[cribbager in reply to PMRpro]

Many thanks. So no need for tests?No 'professional' input - you and all the other contributors have got me through this so far

[PMRpro Ambassador in reply to cribbager]

If you get very wobbly, especially if confused, then yes, some medical input might be good.

All the synacthen test shows is whether the adrenals CAN produce cortisol when given a hefty chemical kick. It doesn't tell you whether the entire HPA axis (hypothalamus, pituitary and adrenal system as a whole) is functioning perfectly and reliably. It can be a bit rusty for as much as a year after stopping pred entirely. At a really low dose it might be worth it - to see if there is any reserve for emergencies. One lady on the forum was fine at 2mg pred until the synacthen test showed there was none being produced when kicked - which then required some support in case of such an event.

[cribbager in reply to PMRpro]

Thank you again

[Hulotsholiday in reply to PMRpro]

Is it only the syncathen test which is useful? I’m at 5mg and working through overwhelming fatigue which has never been so bad in the 6 or so year journey. I’ve put it down to adrenals kicking in slowly and when I mentioned it to GP she arranged a blood cortisol test. Had that before 0900 am yesterday and before taking pred. I had one last year after previously tapering right down and it showed cortisol within ‘normal’ range, whatever that means. I know the syncathen test is more complex, but I don’t understand the difference.

[DorsetLady PMRGCAuk volunteer in reply to Hulotsholiday]

Simply -

A basic cortisol test done at GPs is just that a basic test to get cortisol levels -a syncathen test requires outpatient appointment and involves taking blood sample - then administering a drug then testing again -

-see this for more info -

patient.info/hormones/synac....

[Hulotsholiday in reply to DorsetLady]

Thank you. The cortisol test seems the easiest first step to confirming adrenal activity I guess.

[DorsetLady PMRGCAuk volunteer in reply to Hulotsholiday]

Yes -and then if there’s cause for concern you can be referred for syncathen test.

[tangocharlie]

The 9am cortisol test gives an indication of how much cortisol your adrenals are now producing. Do you know your reading? As an Endocrinologist once explaiined to me, it's very complex but my understanding is heading towards the 400 mark is good. Having had adrenal problems myself I agree with what others have said, if your adrenals aren't working you would be feeling very poorly indeed, so if you're functioning reasonably well at the moment that's a good sign. A synacthen test only shows that your adrenals are capable of responding whereas the cortisol test gives a better indication of how well they're doing. You can also get your electrolytes tested which is an indication adrenals are working to balance essential minerals. Fingers crossed you're winning!

[Frewen1 in reply to tangocharlie]

Hi tangocharlie and everyone, I’m still at 2 I/2 Pred and really struggling to pretend to be normal… legs with no strength, feeling very out of it and wobbly, falling asleep on the tube between stops. I have stuff to do, however, so have to go about my life. H It’s only three months since I stopped TCZ … do you think I should ask for the Synacthen test in another three? By which time I should be on around 1. 1/2mgs? Many thanks x

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

You can ask for one now {usual if you are at 3mg or below] - and as as you are feeling so bad it probably would be sensible.

[tangocharlie in reply to Frewen1]

Yes get a referral to endocrinology for a synacthen test asap (prob best via your rheumatologist than GP, might be quicker with connections). Meantime see your GP, say you suspect you might have adrenal problems post steroids and at least have the 9am cortisol test. If it is suppressed adrenals it is potentially dangerous and you should have a warning on your medical notes and possibly an emergency kit with you.

[Frewen1 in reply to tangocharlie]

I did have the ordinary 9am blood test a few months ago … the GP’s endocrinologist adviser had said he thought there was insufficiency, the hospital thought not. So they said have the synacthen after 6 months off TCZ. Which would be another three months. Thanks for your replies

[tangocharlie in reply to Frewen1]

Well just be alert and if you take a turn for the worse, start vomiting, collapse or anything go to A&E

[Frewen1 in reply to tangocharlie]

Yes, I would. Thanks

[PMRpro Ambassador in reply to Frewen1]

What was the cortisol level at 9am?

[Frewen1 in reply to PMRpro]

So sorry, I can’t remember… I seldom write things down, I know I should