And It's About Time There Was Some Support For Cushing's!
I can trace Cushing's symptoms back to about 3 years ago. I was only 21, 115lbs, 5'4". I started to gain a few pounds here and there even though I was exercising and dieting. Other symptoms started to appear, acne, irritability, anxiety, insomnia, "moon face". I was originally diagnosed with an under active thyroid and put on Synthroid. I continued to gain weight and my doc eventually put me on appetite suppressants and an antideppressant. I continued to gain weight and my blood pressure kept rising to the point where I was admitted to the ER for hypertension. I was close to having a stroke. I was only 23 years old. My doctor took me off my birth control pills, thinking it was probably a hormonal problem. Once I stopped them, I began to notice straie and continued to gain weight. After 6 days in the hospital, no tumor was found so I was released.
I then went to a different endocrinologist who discovered that my ACTH levels were extremely high on all my previous blood tests. All my previous doctors, including an endocrinologist has overlooked this for months. I had an HMO at the time that did not allow me to see the only Cushing's specialist in the Detroit area, at U of M. I protested and wrote/called anyone I thought could help with no luck.
I went ahead with Transphenoidal surgery at Henry Ford Hospital with a neurosurgeon who had done hundreds of transphenoidal surgeries at a pituitary clinic in San Francisco. After the IPSS, both the endo and neuro decided the problem was the left side of my pit glad. They removed the entire half, but found nothing. I also had a spinal fluid leak and contracted Central Diabetes Insipidus due to the surgery which kept me in the ICU for 4 days.
After I was released on New Year's Eve of 2006, I returned to my endo who recommended I have a bilateral adrenalectomy. The surgeons at Henry Ford Hospital were reluctant to remove my adrenals and kept looking for an ectopic tumor, even though my ACTH levels were way above the normal range. They didn't seem confident that this was the correct surgery and they also wanted to open my whole abdomen to remove them.
Frustrated, I left Henry Ford and found the best laparoscopic surgeon around, who performed a BLA. He had to make 10 1-2 incisions on my abdomen, but the surgery was a sucess.
I have to be on replacement hormones for the rest of my life and after 5 1/2 months, I still have the Diabetes Insipidus, but I'm on my way to recovering.
I went back to work less than a month after my BLA and lost 20 of the 60lbs I gained in the previous 8 months. I'll be on replacement hormones for my lack of adrenals and still do not know if I'll ever get my menstrual cycle again. I take several vitamins each day because my immune system is compromised, but I'd rather have to take pills 3 times a day than have Cushing's! I wouldn't wish this upon anyone!