Who is confused? My surgery or me?: I was asked by... - PMRGCAuk

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Who is confused? My surgery or me?

ChinaWuntoo profile image
8 Replies

I was asked by the GP to remind him, when I reached 3mg in my tapering, that I should have a synacthen test. I have now done so. However, I am being sent for an ACTH blood test

Is this the same thing (I don't think so as I have not been asked to miss the steroid dose and there is no indication that this ACTH test involves two samples of blood etc).

Or is there something I am not understanding?

Before I challenge the GP I'd be grateful for any clarification from members here.

Thank you.

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ChinaWuntoo
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8 Replies
PMRpro profile image
PMRproAmbassador

Synacthen, the stuff they inject for the test, is artificial (synthetic) ACTH, hence the name.

Is your level of knowledge what the GP said (or didn't say) - have you not yet had any info regarding appointment time and what you do/don't do?

ChinaWuntoo profile image
ChinaWuntoo in reply toPMRpro

I had no response to a letter reminding him about the test. I did receive a standard form for an 'ACTH' blood test (reason stated for the request is "f/u" which I don't understand and the accompanying letter stated that it is a "routine" test) and told to book an appointment at a local blood test clinic, not a hospital, with no instructions regarding Prednisolone or any 'warning' that the test would be any different to a normal blood test. I also received a form requesting a lipid profile test (which suggests to me that my request for a synacthen test may have been actioned by a second doctor who was confused?).

I am holding off booking an appointment until I may be able to clarify with the GP.

PMRpro profile image
PMRproAmbassador in reply toChinaWuntoo

f/u usually means follow up and yes - with the extra info, it does sound as if someone has requested a test to measure ACTH in blood - also sometimes of interest in poor adrenal function. But unless the local blood test centre has resus facilities available. I'd be surprised if they do synacthen testing - not they are likely to be required but patients CAN have an allergic reaction. And at the very least there should be an instruction to request a 9am appointment.

ChinaWuntoo profile image
ChinaWuntoo in reply toPMRpro

Many thanks. It seems to me that my GP (or another GP at the surgery) has not agreed to a synacthen test - or he has not yet got round to reading my letter (which would make sense, actually).

Wait and see, I think, until the end of this week when I need a new prescription for Pred which, if it is not done, will need me to shout louder.

And I did mention in my letter that it was thought that stress triggered my PMR in the first place: this is not helping present stress levels.👿

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Are you being sent to local hospital as an out-patient for test?

Have you have a early morning basal cortisol test at GPs? If so, that may have shown low levels and a suggestion that follow up more detailed test be actioned.

If not, GP may have requested the ACTH test anyway...

ChinaWuntoo profile image
ChinaWuntoo in reply toDorsetLady

Not a hospital, just a local blood test centre.

Not had an early morning test.

Why would the GP request an ACTH test? Could it be a preliminary'prior test to a synathen test?

I visited the surgery this morning because I had heard nothing (blood test form arrived after I got back home) and the receptionist said she would chase-up my letter (of two weeks ago).

My letter also requested that I stay on 3mg of Pred for an extra two months as I wonder (with good reason!) whether I am teetering on a flare. No response to that either.

I thought the GP might telephone a response but ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toChinaWuntoo

PMRpro has replied re test- and I’d be included to stay at 3mg anyway.

ChinaWuntoo profile image
ChinaWuntoo

Thanks to you both for your help. I think I am not the one who is confused!

As an aside: this Forum empowers us so much. This morning I asked the receptionist what has happened to my request for 168 tablets at 1mg. The reply was that this was actioned in March alongside some 2.5mg tablets. I tried to explain that this was a former prescription, that my doseage changes every 8 weeks. I tried - and eventually gave up when she said she would action my request (which, of course, she has no authority to do as it is technically a new prescription). But - 'whatever'.

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