cortisol levels can fluctuate- what you need done is the ACTH stimulus test (Where they inject something- i think it's cortisol?) and is about a 3 hour test done.. As for the pain and stiffness, it might be somethign else as well. Have you had an MRI done lately? If not, that dshould be the next step especially where you've had a tumor before. I can relate to the exhaustion/pain- I'm thinking that maybe it might be something other than the acromegally that I had though- maybe soemthing like fibromyaalgia as I'm just not improving and infact getting worse even though I'm technically 'cured' of the acromegally. Are you getting htings like night sweats and full body flushing? Feel like maybe you're running low grade fever at times? I'll break out in a full body flush to the point where it soaks my clothes when Im' stressed- I also wake up drenched (Although that seems to be diminishing lately). Also- do you feel like you have 'brain fog'? Where you find it hard to concentrate? (You probably do if you're feeling exhausted) While these can be signs of hormonal problems, they also can be signs of other medical conditions as well. Tell your endo that if it's not a hormonal problem, then you want to know if it could be something like Fibromyalgia or some other muscle condition & see if she/he can recommend a specialist to check you out. Docs don't understand just how debilitating this is & it's hard to put it into words when trying to describe it to them- sorry you're going through this
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