Will synacthen test make me worse?

[FTY]

Dear Comrades,

I am wondering if anyone can help me with my current treatment dilemma. Basically, I am would like to know more about the risks involved in having the short synacthen test. I know that the test only diagnoses Addison's and doesn't pick up secondary causes of adrenal dysfunction. I know also that it doesn't pick up on any kind of adrenal problems other than completely failing adrenals (Addison's). For me it would still be worth testing despite these drawbacks EXCEPT if it is going to make me worse. I have heard that some people crash a bit after the test because it taxes the adrenals more than they can handle and I wonder how common this is and if anyone has any experience of this?

I'm 32 year old female, I've had ME/CFS for about 14 years but it has only become severe enough to stop me working in the last 5 years and I am now largely housebound. The GP and endo suggested synacthen test based on my symptoms and on the fact that I had various hormone issues prior to becoming ill. I don't have ALL of the key symptoms for Addison's so I think it is unlikely but I do have some so I would like to know, just in case. However, I also really don't want to make myself any worse and the chances are it will come back negative anyway so..... a bit of a dilemma.

I am looking at treating adrenal fatigue and I see a nutritionist and herbalist who are knowledgeable about such treatments.

Any thoughts or experiences would be gratefully recieved.

Best wishes and much appreciation.
x

 

[ukxmrv]

I had the short synacten test in a UK NHS hospital and felt much, much better after the test and for the entire day. However I crashed badly on the next few. For me crashing after a hospital appointment is normal and especially after one that requires an early start.

 

[adreno]

I had one done a few years back, and can't say it bothered me much.

 

[A.B.]

I had a regular synacthen test and felt worse during the procedure and for a while afterwards. The next day I felt as usual.

The dose in a regular synacthen test is about 3-4x higher.

 

[MeSci]

I had the short synacthen test and don't recall any adverse effects, but I was quite ill at the time.

It seems likely that this test is a waste of time for pwME, as we don't appear to produce enough of our own ACTH. So I would expect us to feel generally, temporarily, a bit better after being administered exogenous ACTH.

I have posted some abstracts about the processes here.

If there were a safe way to supplement our ACTH on a continuing basis, I think it would improve our condition, but I haven't been able to find any info on a safe way.