Synacthen Test

Posted by spainishlady @spainishlady, Jan 25 9:04am

Good afternoon ,
So I have just seen my Rheumatologist and he want s me to have a Synacthen test to see what my Adrenal function is like . This is good as he is leaving no stone unturned as he isn’t convinced I have PMR and have now become steroid dependant .
Has anybody got experience of this test , it’s relatively straight forward , it requires me to stop my 7.5mg Prednisolone completely for 48 hours prior to the test .
He has assured me I will feel rubbish but OK … feeling somewhat anxious !

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Hello @spainishlady, It's good to have a rheumatologist that is proactive. You will notice we added a little to the title of your discussion to hopefully help members with experience join and share their experience. I was not familiar with the test but did find some information on the test itself.

— Synacthen Test: https://patient.info/hormones/synacthen-test

Has your rheumatologist shared what other conditions they think you might have besides PMR?

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@johnbishop

Hello @spainishlady, It's good to have a rheumatologist that is proactive. You will notice we added a little to the title of your discussion to hopefully help members with experience join and share their experience. I was not familiar with the test but did find some information on the test itself.

— Synacthen Test: https://patient.info/hormones/synacthen-test

Has your rheumatologist shared what other conditions they think you might have besides PMR?

Jump to this post

Hi John , yes he believes many people are given the diagnoses too quickly and in an ideal world we should see a Rheumatologist in the first instant . He hasn’t ruled out PMR but he wants to make sure there is no underlying problem . He feels after 8 months I am now heavily Steroid dependant and wants to make sure my Adrenal glands are not completely destroyed .
If there is no response to the test he will take advice from the Endocrinologist.
I have a 15 year history of vague episodes of fatigue and achey body it’s possible , apparently , my Adrenals have been under par for many years . I am otherwise “very heathy “ all my bloods are within normal range. He has tested for all sorts of autoimmune issues.
Unfortunately this thing is not straight forward as we all know.

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@spainishlady

Hi John , yes he believes many people are given the diagnoses too quickly and in an ideal world we should see a Rheumatologist in the first instant . He hasn’t ruled out PMR but he wants to make sure there is no underlying problem . He feels after 8 months I am now heavily Steroid dependant and wants to make sure my Adrenal glands are not completely destroyed .
If there is no response to the test he will take advice from the Endocrinologist.
I have a 15 year history of vague episodes of fatigue and achey body it’s possible , apparently , my Adrenals have been under par for many years . I am otherwise “very heathy “ all my bloods are within normal range. He has tested for all sorts of autoimmune issues.
Unfortunately this thing is not straight forward as we all know.

Jump to this post

Since you mentioned you have a 15 year history of episodes of fatigue and more, have you seen the following discussions that talk about ME/CFS?

— Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/
— Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments:
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

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this is an ACTH stimulation test[probably expensive]..after this dose of steroids you are probably adrenal suppressed and should not abruptly stop steroids but do a very slow taper and they check cortisol levels

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How long have you been on Prednisolone? Why isn't your rheumatologist convinced that you have PMR? How long have you taken Prednisolone such that you now might be steroid dependent?

My rheumatologist had all of the same concerns that your theumatologist has. When I was 10 mg of prednisone, I was referred to an endocrinologist to evaluate my adrenal function. The endocrinologist said she expected my adrenal function was suppressed but didn't know if I would end up being steroid dependent. Her guess was that I might need prednisone for the rest of my life. She said a synacthen test would be useless while I was still taking 10 mg of prednisone. The endocrinologist would only consider a synacthen test when I could maintain a prednisone dose of 3 mg.

The endocrinologist referred me back to my rheumatologist to determine whether or not PMR was still active. My endocrinologist asked my rheumatologist if I could somehow get down to 3 mg of prednisone.

A year elapsed before my PMR treatment was adjusted and I was able to manage my PMR symptoms with 3 mg of prednisone. At that time my rheumatologist referred me back to the endocrinologist.

I was prepared for a synacthen test. The endocrinologist didn't think a synacthen test would be necessary but wanted an a.m. cortisol level and ACTH level done instead as long as I could hold my prednisone dose for 48 hour.

My cortisol level was very low so I was told to stay at 3 mg of prednisone until my return appointment to the endocrinologist 3 months later. At that time, another a.m. cortisol level was done but not a synacthen test.

My endocrinolgist and I had a long discussion about stopping prednisone. I took prednisone to treat PMR for nearly 13 years before I was able to taper my dose down to 3 mg.

My endocrinologist said my cortisol level was still low but she felt that my adrenal function was "adequate." She explained what "could happen" if I stopped prednisone but also said that there would be no way to predict what "would happen." I was told that it "might be safe" to stop prednisone.

I eventually stopped prednisone and it turned out that I wasn't steroid dependent. The symptoms of adrenal insufficiency were mostly fatigue and some muscle and joint pain. My endocrinologist said I could take prednisone again if I ever felt the need. It was tempting to take prednisone again but I resisted. Slowly but surely after a year or so, my symptoms of adrenal insufficiency improved.

I should add that my rheumatologist still thinks that PMR is active. My current treatment isn't prednisone so my adrenals have recovered.

It is possible to have both PMR and adrenal insufficiency. I have never had the Synacthen test.

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