Cortisol test: After a considerable fight with my... - PMRGCAuk

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Cortisol test

Flivoless profile image
8 Replies

After a considerable fight with my Rheumy, she finally agreed to a cortisol test which came out at 345. Test done just after 9am and my last pred (3mgs) was 23 hours earlier). I am quite pleased with that but the NHS guidelines state: "For 9 a.m. cortisol of 100-400, consider a short synacthen test". I have asked the question of the Rheumy but, of course, no reply yet, but given my additional ailments of late, AtriFib, heart failure and a Cardioversion Op (12 days before test) and all the additional pills I'm currently taking, I'm thinking it's probably not worthwhile. Any advice will be gratefully received.

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Flivoless
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PMRpro profile image
PMRproAmbassador

Since you are still at 3mg, I'd take that as satisfactory as a baseline. The NHS rubrics are for patients NOT on pred at all and in that case, a synacthen test would make sense.

Getting your GP to do another basal cortisol (it doesn't have to be the rheumy if she is being difficult) if you get to a lower dose of pred would then tell you if it is improving - Snazzy and (I think) SheffieldJane both found they got improved figures at lower doses though they weren't that good at 3mg.

Flivoless profile image
Flivoless in reply toPMRpro

Thanks as always Pro. As a matter of interest, my CRP was at 1.3, having moved from 1.2 last April to < 1.0 in August

PMRpro profile image
PMRproAmbassador in reply toFlivoless

I'd want to keep a close eye on that - that under 1 in August is what to aim for and you need to know if it is creeping up where you are.

Flivoless profile image
Flivoless in reply toPMRpro

Yes, that's what I thought but it does coincide with what I think was a mild UTI judging by the number of visits to the loo (rather less than now with the blasted "water" tablets I'm having to take 🥴

Flivoless profile image
Flivoless in reply toPMRpro

I contacted my Rheumy about keeping an eye on this and the email reply was "the increase in your CRP score is negligible, so you do not need to worry about having another blood test". A totally unacceptable response I think. CRP steadily creeping up is a worry. What she has forgotten is that, way back, she gave me a whole bunch of blood test forms and I still have some of them. So I'll have another test, say in a months time, whether she likes it or not.

PMRpro profile image
PMRproAmbassador in reply toFlivoless

It is negligible - but if it happens next month, and the next month, it won't be will it?

Flivoless profile image
Flivoless in reply toPMRpro

Exactly, seems my Rheumy doesn't believe that prevention is better than cure.

PMRpro profile image
PMRproAmbassador in reply toFlivoless

Time will tell ...

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