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Karen's Story

I am thrilled to have stumbled upon this website. I am so grateful for the information that I’ve found and I’m comforted to know that I am not alone in this battle to overcome Cushing’s.

In March of 2007 I visited my OB/GYN with the concern that I hadn’t had a menstrual cycle in over 2 years. This was unusual to me because usually my menstrual cycle would return about 6 months after having a baby. My doctor didn't seem too concerned but he decided to run a few basic blood tests. According to him, everything looked fine. He said to wait a few months and see if my menstrual cycle returned.

In May, still no menstrual cycle. I went back for some more testing and an ultra-sound. Still I was told everything looked fine. My OOB/GYN gave me some birth control pills to start my period. I still felt unsettled with his answers. I knew that something just wasn't right with my body. With the encouragement of my mother-in-law (she is a nurse and has been to an endocrinologist for thyroid issues), I agreed to see an endocrinologist.

I finally was able to get an appointment with an endocrinologist in August. We discussed my symptoms and she ordered some extensive blood tests. I thought she was a little extreme but I agreed to do all the tests. Many of my tests came back out of range so she ran another round of tests to be sure. My cortisol level kept coming back extremely high. My endocrinologist hinted that I might possibly have a disease called Cushing’s. I had never heard of the disease so I did some research. I discovered that I had a lot of the symptoms of Cushing’s. I was amazed! I had really struggled losing weight after having my 4th child. I couldn’t figure it out because I was doing all the right things. I watched what I ate (I even went to Weight Watchers and I did lose 20 pounds over 10 months), I worked out at the gym, and I ran 3 miles a day on the days I was not at the gym. I was so frustrated with myself. It was like something was working against me.

In November I had an MRI of my pituitary gland and no tumor was found. Next, I had a CT of my adrenal glands and a tumor was found on my right adrenal gland. My endocrinologist confirmed that I had Cushing’s and explained that the tumor was causing the high levels of cortisol. The tumor would need to be removed. I was overwhelmed with the idea if surgery but grateful that we had discovered what was causing all my strange health problems.

I had my right adrenal gland removed on January 7, 2008 and I am now recovering from surgery. I feel fine. Just a little nausea every once in awhile. I am wondering what to expect as far as recovery. How long will I really have to be on steroids? (I realize this varies). My endocrinologist put me on Hydrocort 20mg in the morning and 10 mg at night for the next 2 months. I will have my levels checked at the end of 2 months. I would like some input in answer to the following questions: Is the amount of Hydrocort I’m taking a normal dosage for that period of time? I want to get off steroids as soon as I can. Should I be able to taper off my dosage sooner? What should I expect now as far as my appearance? Will my moon face and buffalo hump ever go away?

I would appreciate any advice. Thanks.


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