Cushing's Info

Our Mother had acgromegaly. My constant headaches caused my Internist to request an MRI of the brain, resulting in diagnosis of pituitary tumor, size 8cm, in 9/08. Subsequent MRIs showed it continued to grow. The Endocrinologist kept sending me for labs that came back in normal range and because my Vitamin D was always so low, always kept upping dosage of Vit D. In 11/09, my body began changing at rapid speed !! enlarging stomach & abdomen, weight gain of 40+ #'s in 4 months, purple stria on both breasts, and horrible amts of facial hair !!  She kept telling me to diet & lose weight!!

I became my own advocate, did copious amounts of research and finally demanded that she give me the one last test for HGH !! Mine registered at only .4 !!!!  She immediately sent me to a neurosurgeon and surgery is now scheduled for 4/21/10 !! What was so frightening was to watch my body change !!

My sister saw me once a week & was horrified by what she was seeing !!  My sister's body has changed also but hers has taken 18 years to reach the point I am at now !!  On the web, we found suggestions of cyclical & familial Cushings' - something our endocrinologist has never tested her for !!  We found an endocrine research doctor on the net & I will go with my sister to the 1st appt w/this new Dr on 4/20 -- the day b4 my surgery !!

We are certain that this new Dr will finally be able to diagnose my sister & take appropriate action !!

You HAVE to be your own advocat, do your own research and if need be, demand results from your Dr!! I always was under the impression that doctors were supposed to look at all the test results and put all the pieces together to reach a diagnosis -- I was wrong !!

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