Cushing's Info

I just wanted to share my story to help any of you who are starting to deal with this disease!  I can provide more details-feel free to email me!-but the basic story is:

Finally went to an endocrynologist fall of 2009 because my symptoms of irregular periods, inability to loose weight, fatigue, insonmia, etc. were finally bad enough that I thought they needed to be dealt with before I graduated college.  After my initial appointment the doctor thought immediately I had Cushings and began testing.  After looking at pictures and my medical records from previous appointments he figured I had developed this disease when I was about 8 and had experianced it in cycles up until now (I was 22).  After a barage of testing which showed VERY high cortisol levels he officially diagnosed me and we were getting ready to start the final testing to determine pituitary or adrenal.  In October I was in a bad car wreck and the testing had to be put on hold until after the New Year.  Once we got the MRI/CAT scans and the CRH test done we were sure it was pituitary and I scheduled for surgery with Dr. McCutcheon.

He is supposed to be one (if not THE) leading pituitary surgeon in the nation.  He currently practices at the MD Anderson Cancer Center in Houston, TX.  It was a bit of trip for us but we thought it was worth it!  Stayed at Rotary International Hotel which is attached to the hosptial where all your appointments and surgery will be-this is VERY nice, and the staff is amazing.  We got down there and met with Dr. McCutcheon the day before surgery-he was awesome!  Very calm, explained what he thought he saw on the MRI and how he was going to approach the surgery.  The MRI was NOT clear and had been read as "normal" by the radiologists at home but he knew what he was looking for and showed me.  Morning of the surgery I was put under-and I cannot emphasize enough here how awesome MD Anderson staff is, they treat you with respect and compassion and never make you feel like you are just one in a long line of patients.

The surgery was very successful.  He found a tumor right where he thought-went in under my lip b/c my nose was not big enough for that approach.  The only complication I had was a mild case of diabetes insipidus (I think that is the formal name, basically it means you pee a lot and can't control it b/c that part of the gland was bruised in some way) which they cured with a pill.  I had to take it once and then I have been fine!  I was supposed to go on replacement cortisol to let my body adjust from the high levels it was used to to the normal levels I have now but so far I have not needed it.  I took it once and it made me feel tired and groggy so we decided to wait until I felt bad enough to take some and so far I have not reached that.  I am currently only a week out from surgery so I still have 5 weeks of the sort of "crucial" recovery time but I am already feeling so much better and can only imagine what I will feel like then!

Please, please feel free to This e-mail address is being protected from spambots. You need JavaScript enabled to view it any questions or concerns you might have and are afraid to ask a doctor or just feel like they are stupid...I had several before mine and was lucky enough to know someone who had just gone through the surgery and was able to get a lot of information from her.  All of you waiting for a diagnosis or surgery are in my prayers-I hope you are able to find the cure I did!