And It's About Time There Was Some Support For Cushing's!
I am 52 years old, married with a beautiful daughter and absolutely adorable grandson. I teach Family and Consumer Sciences and also have a degree in Dietetics.
Just one year ago (October, 2003) I had never heard of Cushings, and had no idea what it was. My PCP took on a new associate in August and I saw him for the first (and turned out to be only) time in late October for my regular, annual physical. This doctor was seeing me for the first time (as opposed to my regular doctor whom I've been going to for at least 20 years).
After getting my history, he began asking questions. He kept coming back to, are you sure there are no diabetics in your family? The answer was a resounding no. So, we reviewed my history. I had had a cyst on my thyroid that was "suspicious" therefore removed back in 1988. The cyst was benign, but I was diagnosed as hypothyroidism. I was soon also found to have an MVP (mitral Valve Prolapse) so started taking Inderal.
After several years I had a gallbladder 'attack' and soon had a laproscopic gall bladder removal. Then in 1996 I was diagnosed as having GERD. Slowly my weight was starting to go up as was my blood pressure.
But, then in 2002 I began the trip through menopause. So, a lot of my 'symptoms' I chalked up to my age!. I began to notice that I had red blotches on my cheeks which eventually turned purple. I frequently looked like I'd been punched in the cheek. But again, I just thought it was hormones (or the lack of!) I started not feeling as good as I used to and I began to feel like I must look like I was 9 months pregnant, most of my weight was right around the middle, and then my cheeks and my neck, I had no chin by that time.
Then, along came my appointment in October, 2003. My new doctor ordered my regular blood work, but also ordered a Cortisol level test. The hospital (I live in a rural area!) had to look it up, took them about 15 minutes to figure out what he wanted! That test came back high (I don't have figures, was just told it was high), so he ordered a 1mg. dexamethasone suppression test. It came back that I did not suppress. Actually, when the nurse called to tell me the results she was happy because the level came back normal. But by then I had found these boards and begun to educate myself and knew that I should have supressed IF I were normal. No one had yet mentioned Cushings to me, I just went to the search engine and typed in Cortisol to see what he was looking for. And from there I found these boards and began to educate myself.
Well, my 'new' doctor left the practice in December (as I said I only ever saw him that one time) and my 'regular' PCP really picked up the ball. She ordered a 24 hour urine and then with those results she recommended that I see an endocrinologist--the one who had handled my thyroid condition. I hadn't seen him in more than 10 years and didn't know how much he knew about Cushings. So, I began really researching so that I could go to my first appointment well versed in Cushings. (thanks to you all here!!!)
The receptionist called to make my appointment and the first she could get was 6 weeks away. So, my doctor called, and talked directly to the endo and I had an appointment the next day!!!!
He had all my records to review. When I met with him, he too kept asking me about Diabetes. And he got the same answer, a resounding NO. Then he really looked over my work up and began thinking Cushings. He even said the word! It turns out he sees 3 or 4 Cushings patients a year and knows his stuff. He ordered a 2mg.Dex test, another 24 hour urine test, and then said he would order an 8 mg. dex test depending on those results. Needless to say I had the 8 mg. test and still failed to suppress. At my next appointment, in February, he ordered an MRI of the pituitary which came back normal so he ordered an ACTH and an MRI of the adrenals. The ACTH came back indicating a non-pituitary source and the MRI showed a 3.9mm tumor on my left adrenal gland. By my next appointment, in March he was recommending surgery--laproscopic. He said no one in Altoona has done it so he wanted me to go to Pittsburgh (UPMC). He recommended a surgeon there, Dr. Yim. I asked him if it could wait until the end of the school year (June 4). He said absolutely not, get it done NOW! He was concerned because not only was my blood pressure running higher, I had developed Type II Diabetes.
So, he made me an appointment with the surgeon for April 25. I don't drive in Pittsburgh, so my husband drove me. We met and he said he couldn't believe I hadn't been diagnosed before now because I was a 'classic' Cushings appearing patient (gee, thanks a lot doc). My surgery was scheduled for May 19, 2004. I made the necessary arrangements at school to be off from the 17th to the end of the school year.
Well, to shorten this up a little, the surgery went well, and I am now 4 1/2 months post-op and have weaned down to 2.5 mg. Cortef and anticipate going completely off in 2 more weeks.
I have an absolutely wonderful endocrinologist--he's really on the ball and very aggressive in treating Cushings. His name is Dr. Wilford of Blair Medical Associates in Altoona, PA.
I still believe that Dr. Mock was in my physician's practice for those 3 months, for me! As it says in Esther: "for such a time as this".
God has been very good to me, leading me all along the way.