I am a 31-year-old, female, who has been diagnosed with cushings syndrome, cause is still to be determined.
Around October 2008 I realized that I was having worse acne breakouts than normal and had gone down 2 breast sizes. My Dr was a little concerned but since I had recently lost about 12 pounds he said it might be normal.
I requested that he do a hormone test and it showed that I did have elevated levels of testosterone, he ordered an MRI (not pituitary specific though) and did not see anything unusual w/ my pituitary. He suggested I go to a endocrinologist at the time but life got hectic and I never did. At the time my husband was deployed and would come home every 6 months, when he would come home I would get on birth control.
In January '09 I had been on birth control pills for 2 weeks and had a severe anxiety attack that lasted for 3 days, after drinking with some friends. I am still not sure if it was a mixture of being back on the birth control + alcohol that set off the anxiety attack or if it was cortisol related. I began gaining weight in June '09, about 10 lbs a month, until I had gained 30 lbs. I also began noticing dark stubly facial hair on my chin and my breakouts had become more like an acne rash all over my face, back, chest, and upper arms.
We moved to MD in December '09 and I immediately begain getting referrals to see an endocrinologist. My endocrinologist found that my cortisol levels are mildly elevated 80-100. I have been doing multilple cortisol testing, I don't even remember all the names of the tests. LOTS of 24 hour urine tests, including the Dexamethasone week long test, 2 midnight mouth swabs, cortisol infusion test, different blood work, ultrasound (to check for PCOIS), another MRI w/ contrast (pituitary specific this time).... She said that she did not think I had cushings disease due to the results of the 24 hour Dexamethasone tests and the cortisol infusion test showed my adrenal gland was working properly, no problems in '09 with my ovaries (but I do have a family history of problems w/ cysts), however there is a tiny "spot" on my pituitary gland, since the first MRI was not pituitary specific it is difficult to say if it was there at the time or not.
I now weigh between 165-168, I stay on antibiotics for my acne, it is no longer a rash all over but still much worse than it used to be, I cannot wear sleaveless shirts or go w/o makeup, my hair is graying much faster than it had previously, my memory is horibble, I have mild anxiety attacks about once a month (nothing like the one previously mentioned) only one that was really scary (I thought I was having a heart attack b/c of the chest pain) and I refuse to take birth control because I do not want any extra hormones effecting my emotions, I am a little more irritable, I am tired a lot, more recently than a few months ago. I don't know if it is related but over the last few weeks I have been having a lot of leg pain similar to cramping but consistent.
Well that is my story so far. I go next week to NIH in Bethesda to see a specialist who deals with mild cases of cushings and teeny tiny "spots". My endocrinologist gave me the option of doing nothing and waiting a year or so to see if my levels go up, but I just can't stand the constant battle to keep my weight down and feeling like I want to hide b/c of my skin, so I am going to see what NIH has to say about it.
I am afraid they are going to say that my symptoms and cortisol levels are too mild to do anything about and I will just have to suck it up and deal w/ it. Work out harder, eat less and forget about tank tops and bathing suits.
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