And It's About Time There Was Some Support For Cushing's!
Like so many others, I have menagerie of health issues. The most challenging is Chronic Pancreatitis. My first attack happened when I was 8 years old (now 48) and have been chronic since Aug 2000. In my 20s I was diagnosed with Prolactinoma (I think) - milk production when there shouldn't have been any. Though all recent blood tests have come back normal.
In May of this year I had my PTH checked for the first time after unexplained blood in the urine. Diagnosed with Hyperparathyroidism. Still no treatment for that, though I plan on going to NIH after the first of the year. At first it was blamed on a Vitamin D deficiency resulting from the malabsorption assoicated with the chronic pancreatitis.
In Nov I had a MRCP (which is actually a MRI of the abdomin) and a tumor was found on my left Adrenal Gland. Have done 2 24 hr urine collections and Cushings is "suspected" with an over production of Cortisol. Yesterday my Endo called to say I need more 24 urine tests to confirm diagnosis of Cushings.
Given that I have documented problems with all 3 "P" glands and now the tumor on the adrenal gland, I am very concerned about MEN1. Wish they would just remove the tumor and biopsy it to find out if it is cancerous instead of having to go through mroe tests first. It seems my life is just a series of one test after another with little or no treatment.....
I am originally from Chicago. Have lived many places in my life from Maine to Texas and many points inbetween. Currently living in Charlottesville VA
