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Amy's Story...

hello, I am 25yo and have been tentativly diagnosed with cyclical cushings. It has been a very long road to even this, my symptoms began when I was a freshman in high school. At 14 I was 5'0 and weighed 131 lbs and wore a size 9/10. I played volley ball in school rode my bike every day and read fiction in the evenings. That summer befor high school I was very depressed and did not feel like doing any of my usual activities, all I wanted to do was hide out in my room escaping into fiction novels and having nothing to do with my family or the world in general. During my freshman year I started picking up a lot of weight but I was not eating much of anything. I was eating about 500-700 calories a day and the weight just kept piling on. Of course going to the doctor was an exercise in futility because all she would say is you are over weight go to a nutritionist and exercise. I did go to a nutritionist and tried to exercise not that either of those things helped. I kept gaining and began to have other health problems. I kept getting sinus infections and terrible migrains, I was cold all the time, tired constantly, and hair started to grow on my chin and the underside of my jaw.

By the time I had graduated from high school I had gained 75lbs and started having hypoglycemic episodes, the migrains got so bad the doctors thought I had menengitis. They sent me to a neurologist all she could come up with was migrains. I thought "big surprise." When I was 18 my gyno noticed the hair growth she tested me for thyroid and found a abnormal level of prolactin and sent me for my first MRI. The MRI indicated I had a microadenoma on my pituitary gland and she put me on 100mg of spironolactone once a day but said nothing about going to see and endocrinologist.

For the next five years no further tests were done. Then I found a new primary care doctor who did every test imaginable and told me to see an endocrinologist asap, my cholesteral was 212, I had high blood pressure, my weight had gone up another25lbs and was borderline diabetic. My endo tested for for pcos first thing, when that was negative she started the testing for cushings, this was in 2006. I've done several 24hr urine collections, several dexa tests, multiple blood tests, glucose tolerance test and adrenal MRI. She has settled tentatively for cyclical cushings. Befor she sends me to a neurosurgeon I have to have another MRI, do another 24hr collection and salavitory test.

I am impatient to have everything settled and have the surgery so that maybe I could have a semi-normal life again. I watch what I eat, take an hour ballroom dance class once a week and try to walk every day. I have lost 20lbs and now my weight is stationary but i still have migrains, sinus problems, leg pain, excess hair growth, acne problems ( which I did not even have during puberty), fatigue and heat/cold intolerance.

I'm glad that I have found this site and the support that it now provides. take care all.


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