Cortisol Test

[Fifegran]

I am currently on 2.5mg pred, tapering to 2mg using Dead Slow and Stop method. Have been at 2.5mg for 3 months. My GP want me to have a blood test to see, in his words, “what’s going on with me” and told me I need to be at the surgery early (8am) so they can measure my cortisol.. I seem to have read somewhere that you need to have it done again later in the day as well, but he says not, once is all they need. Has anyone else had this done at their Surgery? Am not having any problems with pred, just taking my time, sometimes feel a bit nauseous.

[PMRpro Ambassador]

The basal cortisol test is what he is talking about - and really while you are on pred at all is unlikely to tell him much. It should be at its highest between 8 and 9am.

We talk about the synacthen test - which shows if the adrenal glands are CAPABLE of producing cortisol when they are stimulated - as they would be if you were in a stressful situation. Then they take a sample at 9am, give you an injection and take another sample a bit later and look to see if it has gone up in response.

[Fifegran in reply to PMRpro]

Thankyou. I have asked for the Synacthen test several times but was told “there was nothing to cause them concern”, and they didn’t think it necessary. My thinking was, how do they know, a Synacthen test would have let me know if my adrenals were capable at least, as you say.

This was some time before the Lockdown, probably some time before these things are up & running again.

[PMRpro Ambassador in reply to Fifegran]

Maybe when they do the basal cortisol test they will see something to change their minds ...

The study showing a large proportion of long term steroid patients have problems with the return of adrenal function is pretty new. I don;t expect many are aware of it yet.

[Fifegran in reply to PMRpro]

I wasn’t aware of a Study taking place, interesting! I do want off pred if possible, but find it a scary thought to wake up one morning and don’t have to take these wee white pills!

[PMRpro Ambassador in reply to Fifegran]

Done and dusted - it was done in Leeds.

[Sheilamac in reply to Fifegran]

When I was down to around 2mg, I soon found out that my adrenal system wasn't working well enough. I had a collapse, barely able to lift one foot after another to walk. Immense fatigue! Upped the Pred, eventually to 5mg. Am now at 3.5 and can't even get down to 3mg! Last year, GP said I could go for Synacthen test, but I suspect she was humouring me... and then came Lockdown. Where are you in Fife? At least your GP seems to be thinking about you... mine in Tayport doesn't even want to do blood tests.

[PMRpro Ambassador in reply to Sheilamac]

That practice has form!!!!

[Sheilamac in reply to PMRpro]

Hopeless!

[Fifegran in reply to Sheilamac]

Hi, was so sorry to hear about your experience, that must have been very frightening. I am in Markinch, was hardly ever at a doctors until PMR came along, I feel they have looked after me very well, I have my blood checked every 2 months, it used to be monthly for the first year, am now 2yrs, 1month into the journey. Was last week the GP said he thought I should have the cortisol test. Am currently tapering from 2.5 to 2 using very slow method, Dead Slow & Stop. Took me long time, maybe 3 months, to get from 3.5 to 3, think your body needs the time to adjust. Hopefully you will get a Synacthen test as things get back to normal, assume you would go to Dundee? I used to worry being on 40mg, now I worry on the low doses,

Just a born worrier I guess.

All the Best!

[Sheilamac in reply to Fifegran]

Thank you. Yes it would be Ninewells. I started on 15mg and that was 6 years ago in July! I have pretty well managed it by myself, and it has bee ok, if very slow. However, if it hadn't been for this site and patient.co.uk and PMRpro in particular, I don't know where I would be......

Great Corona results today, eh! Stay safe xx

[PMRpro Ambassador in reply to Sheilamac]

I do get annoyed - Sky News covers herself for a couple of minutes and then shoots off somewhere else! It was Wales today! But I think she has done a pretty good job with a couple of exceptions which I suspect were London-led ...

[SheffieldJane]

My first test showed Adrenal Insufficiency, my second was normal. Good luck, you’re doing well. I had to go to the Endocrine Clinic. Don’t take your Pred before you have it done.

[Fifegran in reply to SheffieldJane]

Yes, it must be reassuring to have it done. Will remember to take my pred later!

[SheffieldJane in reply to Fifegran]

I think we still wobble for a year after completing treatment for PMR/GCA. Good to get away with less collateral damage though. Good luck!

[Rugger]

I had the 9am cortisol test a couple of weeks ago. No pred for 24 hours beforehand and I was fasting. The result was "on the low side", but I was on 6mg at the time, so it will be repeated when I'm on 4mg.

[Fifegran in reply to Rugger]

Doctor did say to fast, am hoping it’s a good result as I’m down to 2mg. Better Luck with your next one!