Cortisol levels

[marionofnorwich]

Just looking for insights here. I was diagnosed mid-2020 and have been taking Pre since August 2020, started on 15mg, got down to 4mg, got Covid (a year ago), flared, went back up to 10mg and worked down again. Now back down to 4mg and am feeling generally that the PMR is receding (thank goodness). I have mobility issues because of a (probably Pred)-damaged knee, and my leg muscles are very stiff. I just had an 8am cortisol blood test which showed a level of 190 and the rheumatologist advises a short-synthacen test as it may be that my adrenal glands are not kicking in. This test is yet to happen but I thought I would just ask people's opinion of this as I gather that the level should be more like 500 though not yet clear about it all.

[123-go]

Hi. There are a number of responses to similar questions in ‘Related Posts’: have a look here to start with:

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[SnazzyD]

Hello, at 4mg my adrenals were not particularly good on my Synacthen test but by 1.5mg things were markedly improved. My Endo wasn’t unduly concerned because they expected some sort of suppression at 4mg. I just had to reduce very slowly to keep reminding my body it had low levels of cortisol and needed to step in. They said 1mg per month and I declined saying that that was too fast for me to be able to manage a day in my life, so I went slower as in 0.5mg over anything from 6-14 weeks.

[marionofnorwich in reply to SnazzyD]

Thanks  SnazzyD I am not too worried at this stage, as you say still at 4mg and only recently down from 4.5mg. In fact I was a bit surprised that the rheumatologist suggested doing the test. And I don't feel too bad generally. Yes, more tired than usual but I have lived my life on fully charged Duracells so even being suppressed I am still quite busy and just take it easy when I need to. Luckily my medics aren't pressurising me and I can reduce at my own pace but I will be glad to get off the steroids because of other long term effects.

[PMRpro Ambassador]

The reason your basal cortisol is 190 is because you are still on 4mg pred and I would say it is very promising in fact. Few endocrinologists would do a synacthen test on someone above 3mg pred and I know that endos in your neck of the wood are usually quite sticky about that.

Under 100 for basal cortisol is indicative of definite adrenal insufficiency. Above 450 is normal but the higher it is in the range between, the more adrenal function has returned. I can't see the synacthen test will tell you any more at present than you know - you have reduced cortisol production because you are on 4mg pred. All it tells you is if the adrenals are capable of producing cortisol when given a hard chemical kick. You can see your adrenals are already getting in gear - I'd wait until you get to 3mg and repeat the basal cortisol - it should creep up over time. The only option other than patience as you get off pred if the PMR is gone is to replace the pred with hydrocortisone - which isn't ideal if you still have active PMR as it doesn't have as good an antiinflammatory effect and is still a corticosteroid with potential steroid effects.

[marionofnorwich]

Thanks PMRpro I am not too worried as I am not generally lacking energy. I do have some kind of weird feeling in my adrenal gland area in the small hours, early morning, and often during the day almost like the beginning of a hot flush but I have had that for years (since menopause) and maybe is linked to oestrogen as it helped when I took HRT (which I haven't done for a while now). I have wondered if it is cortisol or some other hormone being released as it feels rather like that. A bit baffling....