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Susan M's Story...

At the age of 23, I had just moved to Connecticut from Indiana. New state, new friends, and new experiences. I was excited, but never could I imagine what was about to happen.

I worked for a large company that transferred me to Connecticut. There was an employee blood pressure screening during lunchtime one day and I thought...why not? My pressure was 165/115. I was informed to come back in three hours for a retake of the blood pressure. Another check yielded the same results...165/115. I was strongly encouraged to contact a doctor and have this checked out as this was quite high for my age.

The first doctor prescribed blood pressure medicine. On some days, I would pass out from the blood pressure being too low and other days I was just fine. Additionally, I had severe edema, weight gain, fatigue, and massive hair loss. A doctor at work approached me and asked if he could help me...he noticed my swollen hands and felt there was a need to speak up. He recommended an internist and so I went.

I was in the hospital the next day and about to have a 10-day endocrine workup. Immediately, the endo pointed out my buffalo hump (huh?) and explained that the combination of symptoms most likely is Cushings. I had not heard of that disease before and wasn't sure what it really meant.

I left the hospital with the promise of hearing the test results the next week. Unfortunately, it didn't happen. In fact, it was four years later when I pulled the hospital records that I learned the 1.5 mg dex suppression test was positive with a result of 37.5.

After the initial hospitalization, I drifted from endo to endo trying to find someone who had the experience to provide answers for the symptoms. I was mistakenly diagnosed with partial Adrenal-Genital Syndrome and placed on a midnight dose of dexamethasone; it nearly killed me.

The symptoms continued into my thirties and forties. Coming and going --- gained 115 pounds in three months and then lost it only to find that months later it would come back again.

At 40, I had a hysterectomy and the gynecologist felt strongly that I had Cushings Disease. She referred me to a 'specialist' that she knew well and was a bit surprised when I was 'dismissed' with a normal UFC. No one at that time informed me of how to test for cyclic Cushings.

I gave up thinking that I wouldn't ever be able to receive help for these symptoms. It wasn't until I was 50 years old that I had a new PCP who was having a tough time controlling my blood pressure. With high doses of medication, it wouldn't come down to a safe range. I had not told him of the previous suspicion of Cushings but one day it became necessary as he was again prescribing more medication. I was sent to another endo who was deemed to be 'the best for finding difficult problems'. I waited five months for that appointment, but the result was once again the same --- one positive test only this this time the doctor didn't even understand that the test was positive. I was dismissed again.

I found MaryO's site for Cushings and read every word, every post, and every message that I could to gain knowledge. Through this site, I became familiar with Dr. Friedman whom many had visited. I made an appointment and went to LA --- I considered this a last-ditch effort to determine whether or not I had Cushing's. I was prepared to be disappointed again with no answers.

After three days of intense testing and an MRI, I was diagnosed with Cushings. The pituitary tumor showed itself. After 26 years, it took one doctor one hour to piece together the medical history and make some sense of it. I was told there was only one thing that it could be....Cushing's. It was the longest undiagnosed case that he had seen. I returned home with more UFCs and saliva tests to do and nine days later given direction to select a surgery date.

Surgery was in LA and uneventful. The pathology report indicated pituitary hyperplasia.

I had a difficult time while on replacement steroids after surgery and gained 52 lbs. A second opinion six months post-surgery indicated that I probably wasn't cured.

I waited a long time for the diagnosis and it felt like a fairy tale ending when the surgery occurred, however, it was not to be. In October, 2004, I was hospitalized with congestive heart failure. I have come full circle --- because of the lack of high blood pressure treatment (due to the cyclical Cushings), I now have cardiac issues to address and manage.

I participate on this board to help others understand the need to be viligent in pursuing a diagnosis. Don't hesitate to speak up, ask questions, and seek and second, third, or fourth opinion. Most of all, if Cushings is suspected, seek out the services of a endocrinologist who specialists in Cushings as cyclical Cushings is difficult to diagnose. It's now understood that cyclical Cushings requires repeated testing to achieve certainty that the patient does/does not have the disease.