Basal cortisol test

[Billswife]

I am currently on 1mg Prednisolone and have been for the past 12 weeks. I have always reduced this drug very slowly on the recommendation of this extremely helpful forum and have never experienced a flare. My routine yearly blood tests are now due at my GP surgery and I have been in touch with one of the GPs today to arrange these. On asking this GP if a sample could be taken for a basal cortisol test to be done I was first of all advised that this would be pointless as I am on such a low dose of Prednisolone now that I should simply stop taking it. I advised him that I would not be doing that and got a lecture about the toxicity of this drug, the risk of diabetes, thinning bones etc. etc. and, to cut a long story short, he said that I could have this test done, he would expect it to be normal and then expect me to stop taking Prednisolone. I am left wondering if I was unreasonable to ask for this test and would be grateful for any opinions. I should add that I will be asking for the result in detail in due course and will then ask for the opinions of this forum before continuing to taper further, probably by 0.25mg per taper.

[DorsetLady PMRGCAuk volunteer]

Well if GP expects your cortisol levels to be normal, he may be disappointed…

See what it is.. and then come back for more advice…

[PMRpro Ambassador]

Not unreasonable at all and I fear he was rather late issuing all those warnings about pred since 1mg isn't going to do all that but the lack of that one mg could mean you being quite unwell if your adrenal function ISN'T back to normal and it may well not be. The time to tell you that was back at the start.

And there are loads of stories on the forum where people were persuaded that 1mg could not possibly be doing anything so they should just stop. It is loads to manage very low disease activity PMR and taking it away if that is the case will just result in a relapse as the unmanaged inflammation builds up over time until it is enough to cause symptoms.

Two way sword this - almost hope it ISN'T normal just to show it can happen!

[Billswife in reply to PMRpro]

Thank you PMRpro. It is very reassuring to hear from an expert exactly how I myself feel about the current situation. He is the second GP in the practice who has demonstrated very limited knowledge of PMR but I think he accepted that I would not be stopping the Prednisolone at the moment and he then agreed to order the test for basal cortisol. I am hoping for a good result but if I am that lucky I will still take the last steps very slowly - and hope to avoid any further interaction with that particular GP.

[PMRpro Ambassador in reply to Billswife]

Not sure I'd describe myself an expert - but had plenty of experience to know the pitfalls here!

[Oshmar in reply to PMRpro]

I believe you are more expert than the ‘experts’ ! 😂

[Brooklyn747 in reply to Oshmar]

Yep, totally agree with you Oshmar.

[Thiago1396 in reply to PMRpro]

You are on PMR, for sure!

[pata63]

My GP didn't think a basal cortisol test would tell us much until I got down below 2mg. I had a test on April 30th most of the way through my taper from 1.25mg to 1mg. Result was 511 nmol/L (expected range 170 - 500). I've been on 1mg for the month of May and will begin a slow taper to 0.75mg in a few days all being well.

I did experience the deathly fatigue for 3 weeks a year ago (26-May-23 as it happens). I was on 3mg at the time. One day I woke up and it had lifted. I think I got off lightly.

Slow and steady wins the race.

[Billswife in reply to pata63]

Thank you for your response. You must be very pleased with the result of the test. I am hoping mine will be reasonable too but am sticking with 1mg daily until I am sure. I do experience fatigue in a random fashion but confess it may well be as a result of overdoing things - old habits die hard! I wish you well with your next taper and will post the result of the basal cortisol test in due course.

[DorsetLady PMRGCAuk volunteer in reply to pata63]

Yes you were lucky if you only suffered deathly fatigue for me weeks…mine was very random spell, and certainly not as bad as some, but it did go on for a matter of months, not weeks. However, I can recall the waking up one day and it had lifted… great feeling.

[Billswife in reply to DorsetLady]

Thought I had responded to your original response DL but it has vanished! However as you will have seen I will be posting my result before tapering further. It is a great comfort to know that such knowledgable people are around who are so happy to give others less experienced the benefit of their support. Thank you again.

[DorsetLady PMRGCAuk volunteer in reply to Billswife]

No probs- posts on HU have a habit of disappearing especially if you’re on iPad/iphone- on laptop it reminds you if you try and leave page without replying.

Happy to help.. been there in the past.

[Bcol in reply to pata63]

I've been fortunate and not been through the deathly fatigue bit, could still happen I guess. However, my then doctor and I both thought I was suffering from adrenal Insufficiency three months ago, I was on 2.0mg, and organised a basal cotisol. Much to the surprise of both of us the result came back as 749nmol/L, way above normal range. I did another one a week later and it came back just above the normal range. We then moved and changed surgeries and any further follow up got lost in the move but I guess I ought to ask new docs for a test just to see where we are now.

[Hirondelle]

my rheumatologist asked my gp surgery to do as basal cortisol test. They did it and luckily I always check the results on the NHS app. The numbers were very low compared to what it says they should be but the GP had marked the result as ‘normal but to be expected’. Luckily I have a lovely private rheumie so I sent her a copy of the results, she referred me immediately to an endocrinologist who sent me for the synacthen test - result Adrenal Insufficiency. So be sure to check your results!

[PMRpro Ambassador in reply to Hirondelle]

What dose of pred were you on at the time?

[Hirondelle in reply to PMRpro]

4mg

[PMRpro Ambassador in reply to Hirondelle]

Still actually plenty to suppress cortisol production - it's a really dodgy range of doses about there and not much you can do. The average endo only sees the role of the pred and often want to switch to hydrocortisone - but it is rubbish at managing PMR!!