I learned the hard way that I had to be my own advocate. I started researching in reputable places such as medical journals all I could learn about Cushing's Disease/Syndrome. I found knowledgeable doctors/endocrinologists/neurosurgeons to test, look at tests already done, and read MRI's. Only have I expended that effort by traveling all over the country was I diagnosed for the first time preceding surgery to remove my pituitary tumor.
Even after that, when I had a recurrence, I had to choose to travel to a renowned endocrinologist again. There aren't many out there who really understand the disease. Those who research and study it are more prone to understand it. Now, I know that with any disease, finding the doctors who are most knowledgeable can save my life. I went through almost 30 years of Cushing's before my remission due to a bilateral adrenalectomy. I wish I'd know at the beginning what I know now.