Short synacthen test results: Having been diagnosed... - PMRGCAuk

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Short synacthen test results

MillMoor profile image
8 Replies

Having been diagnosed with GCA/PMR in November 2016, I am now on 3mg Pred.Had Synacthen test last week.

Sent a report which said

Interval 0 cortisol 190

Interval 30 cortisol 255

No other explanation.

Gave a copy in at the drs and heard nothing.

Are the results good, bad or indifferent please?

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MillMoor profile image
MillMoor
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8 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

They are definitely on the low side, but maybe not that unexpected as you are still on low dose of Pred and have been on it for a long time.

Are you struggling with any of the usual adrenal insufficiency symptoms.. and who referred you - GP or Rheumy. Whoever it was needs to be following it up and maybe suggesting you see an endocrinologist.

Please chase it up… and let us know how you get on.

MillMoor profile image
MillMoor in reply toDorsetLady

After I posted this I rang the drs. The receptionist said 'That's really spooky!'Dr is ringing you tomorrow morning to discuss it. We had to laugh.

Symptons bouts of upset stomach, tiredness, getting out of breath and stopping to recover when walking the dogs.

Our Drs are excellent so surprised I hadn't heard anything.

SnazzyD profile image
SnazzyD

It means the lights are on which is good but it isn’t a party. Ideally you want 420-430 nmol/L after 30 minutes. Mine weren’t great around this dose and it didn’t take much to wipe me out. Very slow tapering was needed and gradually function was restored. My Endocrinologist suggested 1mg per month but I declined knowing that would have me on my knees. I did 0.5mg per 8-14 weeks from 5mg.

PMRpro profile image
PMRproAmbassador

Definitely adrenal insufficiency - the basal cortisol is low but not outrageously so so there is some adrenal function producing cortisol but there is a very low reserve in response to the synacthen injection, the second level should have been quite a bit higher.

But you are still on 3mg pred so the correct approach according to new guidelines is to continue monitoring the basal cortisol every few months and see if it improves. You should be told what to do in the event of a threatening adrenal crisis and provided with a rescue pack. Things may well improve as Snazzy has explained.

marionofnorwich profile image
marionofnorwich in reply toPMRpro

PMRpro my rheumie Max tested me at 4mg and concluded that my adrenals would never work and to stay on 4mg. I can't remember offhand the exact results bit it was something like 280 after 30mins and 360 after 1 hour. I didn't think it was all that bad. I dont feel exceptionally tired but my leg muscles are suffering. Whether from PMR or myopathy or more general muscle weakness i cant tell.

PMRpro profile image
PMRproAmbassador in reply tomarionofnorwich

I don't think it is that bad either - and as I said, the new guidelines suggest monitoring the basal cortisol every few months while continuing a very slow reduction, rather than giving up unnecessarily. And doing a synacthen test now and again if it looks worth it,

marionofnorwich profile image
marionofnorwich in reply toPMRpro

Yes, and I am going to ask to be referred to an endocrinologist as Max doesn't seem to be that interested in investigating anything further, maybe with justification

MillMoor profile image
MillMoor in reply toPMRpro

Thank you for that info. As replyed to Dorset Lady spookily have a telephone consult this morning! Will let yo know what he says.

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