And It's About Time There Was Some Support For Cushing's!
I am finally going to post my story here.
This whole nightmare starting May '00. I had a miscarriage during my first trimester. I had gained weight already and still continued to gain after the miscarriage. I went to my primary doctor and of course he said go on a diet. But he did do some blood work. It came back showing I was hypothyroid. So, even after medication I still was gaining weight and feeling awful.
I was referred to an endocrinologist. He did some more tests and it showed high insulin and high testosterone. I was given the diagnoses of PCOS. I was put on glucophage and aldactone. I did start to feel a little better and was able to lose a few pounds but then back to feeling bad again. I went back to my endo and he said that he was going to check my cortisol with the low overnight dex suppression test.
This is when I started to investigate cortisol. What was this?
This is when I found this board and have been here since. After researching Cushing's, I knew I had it. It said everything about me. But, the test came back normal. After all of your help and knowledge, I learned that this test was not accurate. Being determined, I persisted. I had my primary doctor let me do a 24hr UFC. That came back slightly elevated. He sent me to another endo. He did believe that I had Cushing's, but he had to still run the test. He first had me do a midnight draw. He was surprised when that was high. He then did another 24 UFC a week later and that was normal. By this time he was shaking his head in confusion. He did order the Dex/CRH, full version, and it came back normal. So he dismissed me with PCOS.
Still determined, due to believing that I had Cyclical Cushing's, I went to my primary doctor and asked if I could do another 24hr UFC because I felt like I was high. I was very irritable. That came back 399 (0-50normal). I went to another endo and did more testing, but never got anywhere. I was not getting any better or losing any weight no matter what I did. I finally had enough and contacted Dr. Friedman. I flew out to LA. with all of my labs. After he reviewed everything and examined me, he said that he believed almost 100% that I had Cushing's. He got me an MRI and an appointment with Dr. Shahinian right away, since I had to get back home.
The MRI did show a tumor, according to the radiologist and Dr. Shahinian. They decided that a IPSS was not necessary. I scheduled my surgery around 1 1/2 months later. After that was done and I was back home, I found out my cortisol did not drop to 0. I was also on cortef and that just compounded everything. I was so bloated. This is when I knew that I was not cured. I did some 24hr UFC's and they were high. The first pathology report did not show a tumor. Dr. Friedman then had it sent to Dr. Asa in Toronto. She is supposed to be the best pathologist. She did find a tumor that was secreting growth hormone and prolactin. I did not have any symptoms, but the tumor was probably too small. The only thing that I noticed was I had to have my rings and watch resized a couple of times. I thought it was just the fat from the Cushing's. But who knows. I am going through more testing to find the source of my Cushing's. I will be having a IPSS soon. I am now 37 yrs old and I hate what this disease has done to me, my family, and my body. I hate to go or do anything due to the way I look and feel. It is also hard trying to find clothes to fit nicely.
I am lucky to have a husband that loves me and understands. But one day I will get well and be back to normal. I will do an update as the stage develops.
