Cortisol levels whilst on 13mgs Pred.

[suzy1959]

For some reason a new GP said he wanted a blood test to check my cortisol levels. I shrugged my shoulders , thinking there was no point but went along with it. This was an ordinary blood test, albeit at 9 am. The result came out at 85.0 nmol/L. Does anyone know what this means? Does it have any meaning at all? Part of me is hoping that I might be producing some of my own cortisol but I do think it is unlikely!

[PMRpro Ambassador]

What a numpty - what a waste of money! All it did was confirm what you know from here - adrenal insufficiency secondary to use of corticosteroids. Under 100 nmol/L for the basal cortisol is unequivocally adrenal insufficiency - but it could be a lot lower! Above 450 nmol/L is called as normal and between 100 and 350 is equivocal and a synacthen test is required for more information - but absolutely NO point if you are still on pred, even at a low dose. It IS handy to know to see if the adrenals are starting to recover a bit though.

[suzy1959 in reply to PMRpro]

Thank you for that. Useful to know!

[SheffieldJane in reply to PMRpro]

It is worrying, the ignorance I mean. Wait until you get to 5 mgs Suzy and ask for a Synacthen test

[PMRpro Ambassador in reply to SheffieldJane]

Not much use at 5mg either really. But a basal cortisol like she had is a useful tracker in a lot of ways, isn't that expensive and can be done alongside any old blood test as long as the blood is taken in the morning between 9am and 1pm

[SheffieldJane in reply to PMRpro]

My good result was achieved whilst I was on 5 mgs. I was surprised.

[PMRpro Ambassador in reply to SheffieldJane]

I know - unusual. But I suspect it is because you had been lower for some time before the GCA was diagnosed and you got back lower fairly quickly because of the Actemra

[SheffieldJane in reply to PMRpro]

That makes sense. Good old Actemra.

[suzy1959 in reply to SheffieldJane]

I would love to get to 5 mgs but not much hope of that at all!!

[piglette in reply to suzy1959]

One day, patience is a virtue!

[Gossiplady in reply to suzy1959]

hi suzy1959, Now come along, We don’t have that attitude! Lol. Slow but sure, we will get there. Not just tomorrow. Now enjoy the good things of today and keep smiling. Every morning with my breakfast, I write down 5 good things about my life and stick it up on the fridge. A good reminder.

[suzy1959 in reply to Gossiplady]

11 years of PMR at around 11 mgs most of that time, puts things into a different perspective.

[Gossiplady in reply to suzy1959]

I am praying for you . Xx

[PMRpro Ambassador in reply to suzy1959]

I've been on pred 14 years and an awful lot of that time at above 10mg - I haven't given up and still love my pred!

[SheffieldJane]

There is always hope Suzy. It definitely seems harder for some patients than others.

[Jackoh]

Don’t lose hope Suzy - it’s been a long time and you’ve been very patient but you never know what’s round the corner on your next taper. X💐