Advice about blood test please.: Hi, I went to Docs... - PMRGCAuk

PMRGCAuk

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Advice about blood test please.

Attic profile image
11 Replies

Hi, I went to Docs last week with utterly debilitating fatigue. Had Pmr since 2014 and am down to 4mg of Pred, don't seem to be able to get any lower though.

I asked for a blood test to see if my Adrenals are up to speed and she is giving me a normal full blood count test. Can this show if my Adrenals are working, I thought it had to be a special test, the name escapes me at the moment.

Thank you.

Jenny

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piglette profile image
piglette

Hi Jenny,

What you need is a Synacthen test. A blood test is collected and then a small amount of synacthen is injected into a vein or muscle. A further blood test is taken after 30 minutes and/or 60 minutes. You will need to stop taking steroids around twenty four hours beforehand.

Daisychain12 profile image
Daisychain12

Hi darling. I think you will get wonderful advice here. I’m not educated in this but I wish you well xxx

SnazzyD profile image
SnazzyD

As Piglette says, Synacthen test. A full blood count isn’t going to tell you about adrenal function but worth doing if you’ve not had one for a while. Do push if you can.

Hi Attic

I had a Synacthen Test at the hospital requested by my Consultant for similar issues as yourself.

Someone will correct me if l’m wrong but I’m wondering if GP’s can/can’t request it themselves? Just a thought as there are some Blood Tests they can’t do, cost implications l think, that maybe unique to Wales but recently l had two batches of bloods done, one by GP then others ordered by the Consultant at the hospital.

When you get your results you could ask her about it again.

MrsN

Telian profile image
Telian in reply to

GPs don't do it but they can arrange it. xxxx

SheffieldJane profile image
SheffieldJane

A Synacthen Test is the one you need to see if your Adrenal Glands have the potential to work. It is a test where you do not take your Pred that morning. They take a base- line blood test. They then inject you with an adrenaline stimulating substance and you wait 30 minutes. Another blood test is then taken. They then measure how effective your Adrenal glands have been, in response to the stimulant .

Mine were found to fall short of the desired minimum. I am hoping that they recover as I continue to reduce. My GP did not seem to know how to advise me. I would say that it would be useful at your stage.

jinasc profile image
jinasc

Once down to 7.5mg and below, then your adrenals should start to wake up. Some medics prefer nearer to 5mg. Best test I ever had, I fell asleep, warm room, comfortable chair and the book I was reading and my specs, where gently taken out of my hand, marker put in on page and glasses made safe. Lovely.

PMRpro profile image
PMRproAmbassador

No, you would need a synacthen test to see if they are CAPABLE of producing cortisol - it won't show if they are actually doing so. A FBC will show other things - but NOT whether you can produce cortisol.

It will depend on the local system - in some places a GP can request the test, some can even do it although it is preferable to have it done at a hospital clinic "just in case" of a reaction.

tangocharlie profile image
tangocharlie

My rheumatologist did the first synacthen test which apparently showed my adrenals weren't working, so I got referred to an endocrinologist who said of course it wouldn't work if I was on over 5 Pred - gave the rheumy a very polite ticking off for now knowing that! But every time I went below 5 pred I felt very unwell. I reduced very slowly to 4.5 and then 4 over a few months, but felt really really unwell and the crunch was losing nearly a stone in weight in a week and rapid drop in blood pressure on standing up, which turned out to be 'a medically-induced form of Addisons'. The endocrinologist then repeated the test and I had to go on hydrocortisone for a few months until the adrenals bounced back again.

Attic profile image
Attic

Hi everyone, thank you for your replies. I thought I was right about this. I will ask her about it again when I get the full blood count results.

Don't you just feel as if you are banging your head against a brick wall sometimes, it seems to be a very misunderstood illness.

Jenny x

Telian profile image
Telian

It is very misunderstood and coupled with the fact we are all different doesn't help either. If a GP has no special interest in our illness, and there are plenty out there, I think they just dismiss it - which is wrong and annoying. Wish they could just have a day knowing how it affects us.

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