And It's About Time There Was Some Support For Cushing's!
I am 28 years old and have had Cushing's since I was 10. It is very clear in my photos when the disease started, but everyone just thought it was a phase I was going to grow out of. I think the disease was a little different for me because it started when I was so young.
Once I went off to college I started to really look for answers about my various health problems : blood pressure, weight, kidney stones, headaches, eye pain, amenorrhea, fatigue, easy bruising, gallstones, high cholesterol, elevated liver enzymes and short stature.
After several years of searching and over 30 doctors, I finally figured out that I had Cushing's. I convinced my pcp to do an MRI and it showed a tumor - but the blood work she ran did not show elevated cortisol. I went to two different endos that completely dismissed me.
Then I found two great doctors at the University of Florida. They actually listened to my story and cared about what I had to say. They ran more hormone tests which did not show Cushing's, but I told them I wanted the tumor removed anyway. They agreed to remove it and the pathology showed that I was right! The tumor was a 5mm ACTH secreting adenoma.
I did well for about six months after surgery and started to show a lot of improvements. Then I noticed a lot of the symptoms were coming back. I told them I thought the tumor was back so they did hormone testing several different times all of which came back perfectly normal.
Finally, at my yearly MRI appointment I told them that I wanted to redo the surgery because I was sure the tumor was back. They agreed to do it again even though the tests were negative. I just had my second transphenoidal surgery on May 2nd, and once again, I was right! The tumor had grow back, and was confirmed by the pathology to be ACTH secreting.
I have never tested positive for Cushing's but I have the disease. I am a firm believer that this disease is not rare at all. I think it is seriously underdiagnosed because of the poor tests that currently exist.
I wish all of you luck with this disease and hope my story helps motivate you to keep looking for an answer. You know your body better than any doctor ever will.