And It's About Time There Was Some Support For Cushing's!
DON'T GIVE UP!!!! The best advise I can give.
I felt I had cushings 18 months ago and tried to convince doctors then. I have it in their notes that "patient believe symptoms are cushings and pituitary related although cortisol level is normal."
I continued with all the symptoms and was tested for everything in the world practically so the doctors could prove I did NOT have cushings. I had ABCD...."anything but cushings disease".
Finally I saw another new doctor and she tested for pheochromocytosis due to my crazy blood pressure and heart symptoms along with everything else. I had long since given up on the cushings disease diagnosis. But with the 24 hour urine she ordered for pheo, she also ordered a cortisol level. I fully expected to be "normal"..a word I had heard so often I was sick of it. But surprise..the level was elevated.
She then ordered serum cortisol and ACTH levels which were also high. I then had an 8mg dex overnight test which I suppressed on. She then said I could not have cushings because I suppressed. I found information for her that stated otherwise, that I should suppress on that high dose if the cushings was pituitary related.
The next week I had an eye appointment and the doc discovered that I had lost most of my right peripheral vision. He asked if I had done an MRI...my last one was over year earlier. The neuro doc I was seeing did not want to order another MRI until I went outside (which is anywhere in the lower 48 states) I live in Alaska. The eye doc was too concerned at my vision changes from the last year and contacted the neuro doc and insisted that he order another MRI. My MRI one year ago had shown something on the left, but it was inconclusive and was not a pituitary MRI. This time a pituitary MRI was ordered and the day before thanksgiving I found out that 2 tumors had been seen.
I got Dr. Kennedy's email address from this site and sent him an email the day before thanksgiving (prior to getting my MRI result) I told him my story and my lab results. He sent me an email back that day saying to fax him my lab results. I did that night and on thanksgiving day he told me he would have his office contact me on monday with an appointment for dec. 7. I couldn't believe he emailed me on Thanksgiving! I went to Florida Shands for my appointment. Dr. Kennedy was wonderful.
He ordered another MRI to check the exact location and some saliva tests. He was honest in saying he may not be able to verify cushings before dec 20 which was when I was initially scheduled to go back to alaska. He called me a couple days later to tell me my MRI had confirmed the tumors and he had reviewed them with the surgeon, Dr. Roper. He wanted to wait on the saliva tests to confirm, but they had already put me on the schedule for the 19th. He called me on the 17th to tell me my saliva tests were 3 times normal and they were definately moving forward with surgery. I had surgery on the 19th and am now one week post op.
I had an adrenal crisis the night after surgery which they say was a good sign that they had gotten all of the tumors and I had been "cured". I am now taking everyday one at a time. I'm still in Florida to follow up with them prior to going back to alaska.
Just don't give up. You know your body and trust your instincts. If you believe this is cushings related you are most likely right. You will have to jump through flaming hoops, but your life and quality of life is worth it. I am proof that you can get the treatment you need if you just believe in yourself and make the doctors listen to you.
I wish you much luck...Tamera
