And It's About Time There Was Some Support For Cushing's!
Back in September 2003 I started noticing some changes to my body. I lifted weights four times a week and did a little cardio and was in very good shape. All of a sudden my face got huge and no matter how well I ate and how much I worked out, I was getting fatter and weaker.
I won't go into all of my symptoms but I knew something was wrong. I went to one doctor 3 or 4 times in a month and he just said that I needed to change my lifestyle by eating better and exercising more because my BP was 190/120. He also did some blood work and come to find out now, all of the test results were consistent with Cushing's. He just dismissed me and never diagnosed me with anything. Anyway, I went to another doctor November 2003. He listened to me and examined me for about an hour, did a chest x-ray, and blood work. The next day he diagnosed me with Cushing's and found a 8x4x5 cm mass on my left lung. After some CT scans and blood work I scheduled a thoracotomy for December 18.
They removed the mass and 2 lymph nodes. I was out of the hospital the 23rd. Biopsy concluded that the tumor is a thymic carcinoid that spread to my lymph nodes and I am scheduled for chemo and radiation starting in February 2004. I'm on replacement steroids (down to 10mg hydrocortisone in the morning and 5mg at night) Cortisol and ACTH is in check and hope to taper completely off of the steroids by the time I start treatments. Face is still puffy but will hopefully go away once I get back into shape, however long that takes.
I made it through chemo and radiation and was in remission. I was completely back to normal by Christmas 2004, one year after surgery to remove my thymus. I developed radiation pneumonitis, an inflamation of the lung tissue from radiation. I was put on very high doses of prednisone and developed Cushing's symptoms again. I went from 210 lbs. and 8% body fat up to 225 lbs. and 23% body fat while losing massive amounts of muscle and strength. I was told this would all go away in a couple of weeks after discontinuing my prednisone treatment. I was off prednisone as of February 10th. I saw doctors 1 month and 2 months afterward because my Cushing's symptoms kept getting worse, unlike what I was being told. They did CT and PET scans to be cautious, both of which came back negative.
The doctors released me and again told me that the symptoms would go away. I have been on the same diet and exercise regimen the entire time and the symptoms keep getting worse. Last week, July 1st, I went back to my doctor. He, finally, had my ACTH and cortisol checked and both were high. CT scan negative, but PET scan shows "something" in my right chest. I will find out more this week. However, I do have one theory with all of this. Corticosteroids should not be administered to those with neorendocrine cancers!! I recieved two cortisone shots 3 months prior to developing Cushing's the first time, thymus blew up and started producing ACTH. This time, recieved high doses of prednisone, 3 months later I have another tumor growing in my chest and producing ACTH. Hopefully my doctor's agree that corticosteroids are not the cure-all. Anyway, I will update when I find out more.