Cushing's Info

I am a 32 yr old female who has recently been diagnosed with Cushing's.  I've had unexplained weight gain over the last 10 yrs or so along with the other classic symptoms:  weight gain and inability to lose it, buffalo hump, fatigue, muscle weakness, bruising, purple stretch marks, menstrual abnormalities, recent high blood pressure.  I struggled mostly with the weight issues but could never get a doctor to go any further than a thyroid test to determine what was wrong with me.  I would diet and exercise with no success and then fall into eating unhealthy again and slacking off the exercise.  Why torture myself if it makes no difference???

My diagnosis happened by accident.  I went to my gyno in April 09 because I had my period non stop for about 5 weeks.  This had happened once before about 4 years ago and was corrected with birth control pills.  I had stopped taking them a few years ago.  My gyno noticed that I had gained about 75lbs since the last time I saw her about 2 yrs. previous.  I explained to her that I don't know what to do about it because I try and try and nothing works.  She did blood work on me and checked my thyroid.  Nothing abnormal with it.  She put me on bc pills for the menstrual problems and scheduled a follow up.  I went back in for my follow up about 6 weeks later and while in the office developed a migraine.  I was crying and in a state of distress because of the pain.

Luckily she is in a multi- discipline practice and was able to have a general practitioner come in to examine me.  He sent me downstairs for a CT scan to make sure I wasn't having a stroke or something.  Nothing showed on the CT as abnormal.   He did some additional blood work.   He too was concerned about the weight gain.  He prescribed some meds for the migraine and also discovered that my blood pressure was high.   I was instructed to monitor my BP for the next week and record and report the readings to him.  My BP averaged about 170/130.  He put me on BP meds and had me come back for a follow up about a month later.   He did more blood work which came back with confusing levels of ACTH.  He referred me to an endocrinologist but the next appt wasn't available until mid September.  Then the endo. had a conference and it had to be moved back to Oct.

When I finally went to see the endo. He explained the unusual hormone levels as a result of the BC pills and discounted my weight gain as "some people are just genetically fatter than others."  I'm paraphrasing, but that was basically what he said.  Then he suggested that I consider gastric bypass.  I tried to explain to him my situation with my weight and attempts to control it.  He examined my peripheral vision and looked at my buffalo hump and stretch marks.  He said he wanted to do a couple of blood tests to rule out something.  Over the next month I had 2 24hr. urine tests, 2 dexo tests, and went to the hospital at midnight to have my blood drawn.  All showed cortisol in the 20-28 range when normal was supposed to be under 5.  After the midnight blood draw results they ordered an MRI.  I went in for the MRI 11/17/09.  The MRI it self was not bad, but I am so sick and tired of being pricked with needles that when they told me I would have to get an IV for the dye I freaked out a little.   I know that seems kind of silly, but I veins are hard to find and I am just sick of the needles!!!

The tech showed me the images while I was there and didn't see anything.  I left the hospital a bit disappointed because I wanted them to find something.  I knew that I would have to go for more testing to find out what was wrong if they didn't find anything in my pituitary.  I received a call that Thursday from the medical assistant of my endo. and she said they DID find something!  She was able to fit me in for the next day to discuss the results.  When I went in I was in very good spirits because I felt justified that something WAS medically wrong with me and it wasn't just that I'm fat and lazy.  The endo noticed that I was in good spirits and asked if I was relieved.  I told him I was.  He went over the tumor with me and said it was classified as a macro whatever it's called because it was 15 mm. in size.  He also said that my pituitary gland was enlarged but it wasn't yet pressing on any other areas.  He said I was lucky they found it because it's very rare and most doctors don't look for it.  He referred me to Dr. Nelson M. Oyesiku at Emory in Atlanta.  I'm now waiting for my consult with him.

I assume that surgery is my only option here and have prepared myself for it.  I think this is going to make such a difference in my quality of life that I'm ok with someone sticking sharp instruments up my nose to cut on my brain!!!

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