Low cortisol level?

[hjbradshaw]

Hi all! I am currently on alternating 7/6mg prednisolone and rheumatologist wants me to reduce as much as possible, preferably coming down 1mg every 2 weeks. I have come down too fast/too low in the past and then had horrendous flares. I asked him for a blood test to check my cortisol levels as I was concerned they might be low: I have been on prednisolone for 19 years now. He has just written back to say that I had a low cortisol level and he has referred me directly to an endocrinologist as the random cortisol level was 26. So I am not sure what units he was using in saying 26 as having looked online that seems to be a high figure with some measurements. Can anybody enlighten me and will the endocrinologist do further tests? (I am also mildly diabetic but not on medication and hypothyroid so on levothyroxine...) Thanks!

[SnazzyD]

Hello, if you have flared before and there is some concern over your adrenal function I’d be wary of reducing by 1mg every 2 weeks when you’re under 10mg. Is there a reason why it has been set this fast? At 7/6mg your cortisol level won’t be expected to be very exciting because it could easily still be high enough to suppress some of the adrenal function. It is for this reason that they don’t do the Synacthen test until about 4mg. That test looks at how your adrenal glands respond when they give you some artificial hormone like the one your brain would put out to make the adrenals work. They do a before and after blood check of your cortisol output.

[PMRpro Ambassador]

I think it is just as well your rheumy has referred you to an endocrinologist because he doesn't seem to have much clue! Of course you have a low cortisol level - you are on a high enough dose of pred for cortisol production to be suppressed because the body knows there is enough corticosteroid present for it to function. But above all, after 19 years on prednisolone, and obviously currently at 7mg, to tell you reduce at that rate is asking for an adrenal crisis which could make you very ill indeed.

ouh.nhs.uk/biochemistry/tes...

says "A random (e.g. non-9.00 a.m.) cortisol or a value when patient is on steroids is uninterpretable."

Most of the UK will be using the nmol/L units they quote here - and a 9am value under 100 nmol/L suggests adrenal insufficiency - you were well under 100, but in context it is meaningless.

[larkthebark in reply to PMRpro]

Dear PMR pro ! The information you give is always comphrensive and informative but I am very concerned that we all have to rely on this site so heavily. The fact that any Doctor would be pushing for a rapid reduction in steroid therapy after 19 years and known low cortisol levels is very worrying. The results were in any case , as you said, meaningless in view of current therapy and needed to be measured before taking pred dose and results taken in context of the whole history. .I am currently weaning from 7mgs so will be asking advice from this site as well as my GP who fortunately seems to be on the ball .

Thank goodness for this site and thankyou again.

[hjbradshaw in reply to larkthebark]

Hear hear re this site! It is so helpful to get replies from people who have been in similar situations and who know more about things than the so called experts! I wrote to the Rheumatologist as soon as he suggested coming down that fast-he has even put it in the letter to the GP and I have heard nothing from my GP either who is usually very on the ball but I think would be wary of contradicting the rheumatologist! In that letter I asked for a blood test before reducing that fast due to having been on it for so long and explained I had tried before, but he is still suggesting coming down that fast! However, since I will not be seeing him for a while I am going to control it myself and keep on at the 7/6 for a while yet. I have already noticed on the days where I go to 6 that I am stiffer, particularly in my knees, and from all I know about PMR and steroids over the years my gut instinct tells me not to withdraw that fast and to be careful as I cannot afford an adrenal crisis like I had in hospital when I was without for 4 days after my femur fracture-but even then I had to tell the hospital trauma doctors I thought I was going into an adrenal crisis!! Grrrr!

[PMRpro Ambassador in reply to hjbradshaw]

And there they should have had red flags everywhere about a long term corticosteroid patient. That's why I say tell EVERYONE - bar the cleaners - and make sure it was noted. Don't rely on someone to pass on a message, especially, I regret to have to say, a nurse. I've had the experience of the charge nurse thinking they know better than the surgeon - luckily he asked and I'm not afraid to open my mouth and clype on anyone!

[venezia1]

I requested a synacthen test after nine years on prednisolone and increasing debilitating fatigue. After stopping the pred I had two timed tests which showed I had virtually no adrenal action at all, consequently the endocronologist put me on hydrocortizone instead of pred. I feel much better! Good luck and don't drop too fast if you feel you shouldn't - you are in charge of your body.