Tuesday, June 1, 2010

Serum Cortisol

Dr. Olney drew a random serum cortisol (blood levels) the other day at my appt to see if it is possible that I have Cushing's Syndrome/Disease. I very much expected that the levels would come back absolutely normal and once again my Cushing appearance would just bring on more embarrassment in negative tests... Today the test results came back and although I am not jumping for joy because of such values that would distinguish Cushing's from all others, I was very surprised to know that the levels were a little high.

The problem with hormone disorders is that hormones come in cycles (any woman could tell you that without a medical textbook...). And if you catch the cycle just right you can see the abnormalities, but of course even a person with Cushing's disease will test with normal or slightly elevated labs at one point or another because of the crazy cycling. I guess low levels could be thought of as the day that person "feels ok"... Of course one "slightly high" level does not a diagnosis make, but it does warrant for further investigation. Next step? I will be doing the lovely 24 hour urine collection for cortisol. And hopefully being able to get in to see an endocrinologist that can further test if the results of that are only "slightly" in or out of whack... There is such a serious problem in the medical world when every lab can have it's own high's and low's of test results, sometimes differing in as much as 20 points between labs... Plus there are times when a minimally high means everything and a minimally high doesn't count for squat. Even the average EDSer knows that one. One person with a Beighton score of 6 can be far worse than say me with the score of 8 or 9 (once again depending on which doc you talk to...).

I want to get my hopes up. It would be great to know there is a reason for my wondrous excess that doesn't involve accusing me of eating us out of house and home (which I do not do) or being sedentary. I want to get my hopes up, but I won't. If this is the spark of the light at the end of my tunnel I will rejoice when that gets here, and until then I will keep trudging through, keep doing everything I know I need to do.

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