I am a 33year old man have been having many health issues over the last few years. I have a swallowing disorder called Achalasia and have osteopenia of the hip and lower back and very low vitiam D levels. I have high blood pressure and tachycardia as well that I am being treated for. On top of this I have been extremely fatigued for months. I don't mean just tired I mean extreme fatigue to the point where I get tired brushing my teeth or walking to the kitchen to get a glass of water. I have joint and muscle pain as well but it is not constant. It will be really bad for a few days and then be better for awhile. The joints hurt but are not swollen. So with all of this my doctor has been doing many blood tests and in the last round he got the following results that where not way out of range but it caught is attention.
Tests where done first thing in the AM.
Cortisol AM was 27.4 (Range 4.0 to 22.0)
ACTH, Plasma was 59 (Range 7-50)
Everything else in a standard CBC panel was normal except that my lipase levels were slightly elevated but amylase was normal.
Anyway, my doctor wants to do something called a ACTH stimulator test. From an internet search I found that cushings(pituitary tumor) can cause High Cortisol and ACTH and some of the symptoms I have had over the last year or so, however, I am very thin and don't have any of the physical characteristics listed for cushings. I am not jumping to any conclusions but with all of my strange symptoms over the years there has to be an underlying cause especially with having something like osteopenia as a 33 year old man and there are only 2,000 new cases of Achalasia in the US every year....it has to be connected somehow. With the cortisol and ACTH levels elevated is a ACTH stimulator test the correct next test? I don't think I have ever had low cortisol levels as my blood pressure has always been so high and uncontrolled. Anway, any input would be much appreciated.
He could do a lot of other tests besides an ACTH stim test, yes. One usually does more urine, serum and even saliva tests. There are other blood tests to run too on other hormones to see the effects of cortisol on the other hormones, or to see if it is in fact another disorder that is causing the issue.
As for if it is a pituitary tumor, that is possible, but Cushing's can be caused by adrenal tumors, or tumors anywhere, so the source has to be found carefully.
As for your symptoms, not gaining weight is not typical, but I have met others like you and met others who have only gained less than 20lbs. There is no "one size fits all" with Cushing's symptoms. It is often said that one must have high blood pressure, high glucose, high triglicerides (triglycerides) and I had all low or normal levels. I did not gain weight for years.
Your bone issues are classic for cortisol to eat bone. Low D is also pretty standard.
You may need to find an expert in Cushing's syndrome. You need to find a neuro-endo who will find the correct set of testing and get you on the road to where you need to be.
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