And It's About Time There Was Some Support For Cushing's!
I think I had my first symptoms of Cushing’s in the summer of 1999. I got engaged in November 1998 and spent the following year planning my wedding with my husband. It was a happy but stressful time.
In July of 1999 during a regular ob/gyn appointment my blood pressure was high. At that time the high blood pressure was being attributed possibly to the fact that I was planning my wedding and all the stress that goes with that. Since I was on the pill the high blood pressure was a concern, however, I stayed on the pill until after my wedding in December and my honeymoon in January. When I returned from my honeymoon and went to the doctor to refill my pill prescription I still had high blood pressure. The nurse practitioner I was seeing immediately took me off the pill and told me to make an appointment with my primary care physician, which I did.
My PCP put me on blood pressure medication, which helped. We became concerned when I did not get my period for a few months. I then went to see an ob/gyn; I had been seeing a nurse practitioner. The ob/gyn I saw suspected Polycystic Ovarian Syndrome (PCOS) so she sent me for an ultrasound of my ovaries. No cysts were found in the ultrasound but maybe they were too small to be detected. She also sent me to see our HMO’s ob/gyn infertility specialist who also has endo experience.
The appointment with the infertility specialist (January, 2001) was what did it. He took one look at me and said he wanted to rule out Cushing’s. He ordered a serum cortisol test which came back marginally high. I then went to see an endocrinologist and she had me take all the tests for Cushing’s (blood tests, 24 hour urine sample etc.) I had a CT scan done. The CT Scan showed two tumors on the right and nothing showing on the left. Meanwhile, my symptoms worsened. I had weight gain in my stomach, while my legs and arms were staying thin. I had muscle weakness. The hump on my neck, stretch marks and overall looked and felt like crap.
September, 2001 I had a right adrenalectomy by laproscopic surgery. I was on hydrocortisone after surgery, tapering dosages every two weeks until May, 2002. In December, 2001 I took another 24 hour urine test to check my progress and it was somewhat high (90), but not impossible since I was still taking hydrocortisone and my doctor figured we would see how I felt after being completely off of the medication.
In May, after being completely off meds, I was feeling somewhat better but not great. I then took a 24-hour urine test to see where my cortisol was and it was again high (240). So I had another CT Scan. That scan showed something on the right and a tiny nodule on the left.
My reaction to that was WHAT—there shouldn’t be anything on the right I had surgery to remove the right adrenal gland. Well, low and behold the surgeon had left something. Since the surgery was laproscopic he couldn’t get everything. Well, the first CT Scan showed two tumors on the right side and when the surgeon was doing the surgery he took out a dumbbell shaped tumor and he thought that was what they were seeing on the scan as two tumors—well he was wrong. It was more than tissue that he left, there is still a tumor there.
To make matters more complicated, there is a tiny spot on the left. So now (July, 2002) I am left with the decision of having another surgery to just take out what is left of the right adrenal and go through the med taper and see if the left starts to work and hope the tiny thing on the left is nothing. Or have a surgery to take out both adrenal glands. My tentative surgery is scheduled September 19, 2002, hopefully I will figure out what to do before then.
