Testing a Rollercoaster

And the testing began. For the next several months, I would do a series of blood, urine, and saliva testing to confirm the Cushing's Syndrome/Disease. I learned a lot about Cushing's and the differences between the syndrome and the disease.

The syndrome is all of the symptoms caused by a tumor in the body, but not the pituitary, or by taking an excess amount of the drug Prednisone. The symptoms range from a moon face, buffalo hump, excess hair growth on the face, neck, back, and abdomen, acne, large purple striae (stretch marks) on the hips and breasts, heavy menstrual cycles, muscle deterioration and weakness, joint pain, slow healing and easily bruising skin, vision changes, high blood pressure, diabetes, glaucoma, excess fat around the abdomen and neck (while remaining somewhat normal at the appendages). I think there could be more, but I can't remember them now. I have virtually all of those symptoms except two that we are aware of for now: diabetes and glaucoma.

The disease has all of the same symptoms, except the cause of the symptoms comes from a pituitary tumor. The pituitary is located in the very center of the head at the base of the brain. It produces a hormone known as ACTH. ACTH flows through the blood to the adrenal glands where Cortisol is produced. The pituitary tumor produces an excess amount of ACTH, which then causes the adrenal glands to over-produce the hormone Cortisol. Cortisol acts like a defensive mechanism (fight or flight) for the body. The main reason for the difference between "disease" and "syndrome" is that the tumor in the pituitary actually takes over producing the ACTH and the pituitary either no longer does this job or does it minimally. With the syndrome, the pituitary gland is still producing ACTH, but something else is also - usually what is known as an "ectopic tumor."

The testing to find the pituitary tumor included two MRIs (Magnetic Resonance Imaging). Unfortunately, the size of the tumors in the pituitary are usually so small, they are undetectable by imaging alone. I had one MRI done at the University of Utah and another done at UCLA. Neither found the tumor, although the first was thought to have "something" possibly there.

On March 17th, I had gone to UCLA to visit with two doctors about surgery to remove the pituitary tumor and get treatment for the Cushing's Disease. That is what the doctors all thought I had. Cushing's is rare as it is and the most common form of it is from a pituitary tumor. My blood, urine, and saliva tests showed an elevated ACTH and Cortisol nearly 1000 times that of what is considered normal.

It was about this time that I couldn't stand the losing of my hair anymore, so I had my husband buzz it one morning. Three-eighths inch. It felt good, but I felt also that I looked even more like a turtle than before.