My name is Tina, and I was diagnosed with Cushing’s in March of 2013. I had a tumor removed from my pituitary gland on April 1, 2013. I was 46 years old.
Twenty-seven years earlier, in April of 1986, I also had surgery to remove a large tumor from my pituitary gland. At that time I had not been diagnosed with Cushing’s, nor was it ever considered. My symptoms at that time were irregular periods and bruising on my legs. That surgery was performed sublabial through the gums; the surgery I had in 2013 was transsphenoidal.
Prior to being diagnosed with Cushing’s in March of 2013, I experienced weight gain, depression, high blood pressure, and high cholesterol. My PC at the time dismissed my symptoms as “ getting older”, “metabolism slowing down”. Her recommendation was to diet and exercise. After feeling frustrated for what seemed like years, the final straw came when she said to me, “I’ve never had a patient so upset about weight like you are”. Yes, she actually said that as I sat there with tears falling down my face. I immediately asked friends for a referral to a new doctor and that’s when my journey to diagnosis and treatment began.
My new doctor listened to my history and concerns and referred me to an endocrinologist. After she listened to my story, she immediately suspected Cushing’s. She ordered blood, urine, and salivary testing. After I “failed” all of those tests, I was sent for an MRI which confirmed a second tumor on my pituitary gland. Surgery was scheduled within weeks and the tumor was removed.
I experienced adrenal insufficiency after the surgery and was followed closely by my endocrinologist and neurologist, but when my cortisol levels increased, it was felt that I would benefit from a cortisol-controlling medication rather than a possible additional surgery. I took 0.5mg cabergoline daily for awhile, but now I only take it one time per week. My cortisol levels have been within the average range for some time. I hope to receive good news during my next visit.
My advice to anyone who is experiencing symptoms of any kind that are not normal to them is to not give up. Be your own best advocate. I knew there was something not quite right with my body and I continued to seek answers. Cushing’s is not often talked about, but is treatable. Best of luck to all who are dealing with it.