The ruling out of other conditions: do you think you've had adequate ruling out of other conditions?

[ScoutB]

This discussion in the autopsy findings thread got me wondering:

Aren’t we all supposed to have an ACTH stimulation test for adrenal insufficiency before getting diagnosed with ME? Wouldn’t a lack of ACTH show up? Or is my assumption that this finding would cause an abnormal result on that test incorrect?

Have most people here indeed had an ACTH stimulation test? When I was doing my ruling out I did ask to see an endocrinologist and they tested my morning cortisol, which was normal. He seemed to think this was sufficient to confirm my fatigue couldn't be adrenal-related and didn't mention an ACTH test.

 

[BrightCandle]

This discussion in the autopsy findings thread got me wondering:

Have most people here indeed had an ACTH stimulation test? When I was doing my ruling out I did ask to see an endocrinologist and they tested my morning cortisol, which was normal. He seemed to think this was sufficient to confirm my fatigue couldn't be adrenal-related and didn't mention an ACTH test.

I asked for one and was refused. I was refused a lot of rule out tests including diseases listed in the NICE guidance that require being ruled out. I would not be surprised to find many others have not had this tested. The problem is they do Cortisol and if that is normal enough they claim the entire HPA axis is fine.

 

[StellariaGraminea]

Have most people here indeed had an ACTH stimulation test?

No, I was refused any cortisol related testing. I had had a random afternoon cortisol test the year before at some stage & they refused on that basis.

 

[rvallee]

Have most people here indeed had an ACTH stimulation test?

Nope. Never came up.

 

[PageofME]

I fulfilled the Canadian Consensus Criteria when at the same time I didn't have any other unexplained symptoms. So for me the case was clear.

My doctors would have liked to do a brain MRI to rule out MS. I checked the early symptoms and thought that they were so different of what I suffered from that I declined.

During the first three years of being a moderate my GP and I missed a massive iron deficiency twice because the additional fatigue/exhaustion remained unconscious to us. That was a tough time and a big learning that I shouldn't attribute every new or worsening symptom to ME, but always bring it up and discuss it with my GP.

I find the patient guides by the ME Association great while becoming a longer-term patient. They really cover all the bases.