And It's About Time There Was Some Support For Cushing's!
I am 25 years old who was healthy until about 4 years ago.
I developed stretch marks despite being thin. Then came the weight gain, and boy did it come. I gained close to 100 pounds in about a year. My family doctor did bloodwork, which showed a cortisol level of twice the normal amount. I then underwent a brain MRI, which showed a 5 mm pituitary microadenoma.
Due to these findings, my physician immediately thought of Cushings and referred me to Indiana University. The endocrinologist there ordered a 24 hour urine collection which came back normal. He diagnosed me with polycystic ovaries and sent me on my way.
Not happy with this, I sought out another endocrinologist at Vanderbilt University. Again, I was ordered a 24 hour urine collection which was normal again. I was sent up with a surgeon at Vanderbilt but when I went to the appointment, he informed me that he was not convinced that I had a pituitary tumor at all and refused to do surgery.
During all this, I developed tachycardia and was referred to a cardiologist. I was started on Toprol and was told to get a chest CT to rule out a pulmonary embolism. Luckily, it was negative for pulmonary embolism but it did show a fairly large tumor on my thymus gland.
Thanks to the radiologist who read the CT and did some research we discovered thymus gland tumors can cause Cushings Disease. I was referred to Parkview Hospital in Fort Wayne, IN where they have begun removing thymus glands in patients with Myasthenia Gravis with a new device, called the Da Vinci robot. It is much less invasive then the traditional surgery. I underwent surgery at Parkview on July 31.
I recieved the pathology report from the tumor and it turns out there was actually adrenal corticol tissue within the tumor, which is extremely rare since adrenal tissue is found around the kidneys. I was diagnosed with Cushings Disease after 4 years of multiple tests and seeing doctors who just didn't believe me. I have already lost 18 pounds and its only been a little over a month.
For those of you out there who have the same problem and are not able to get help, do not give up. It may take a while, but sooner or later you will find a wonderful doctor like I did, or have positive tests. I know how frustrating it is, but hang in there.
