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Catstoner's Story...

I have recently been diagnosed with Cushing's. I have been experiencing symptoms for about 15 months. An MRI in December 04 of the pituitary gland was negative, so a CT of my adrenals was done in Feb 05 and a small tumor was found on my left adrenal but the doctor felt that it was not the cause of my symptoms.

Meanwhile, I health continued to deteriate so I kept pushing the doctor to find out what was causing the high cortisol, low potassium, insulin resistance, high prolactin,pitting edema etc. and he referred me to an endocrinologist finally in Apr. I had tons of labs, blood, urine, saliva etc. which confirmed Cushing's for him so he ordered an MRI of the pituitary and it revealed a 1 cm. adenoma on the pituitary that is ACTH dependent. He has referred me to a neurosurgeon and I am awaiting insurance approval and an appt. In the meantime he has suggested that I have a field vision test and a mammogram to start with. I have done alot of research but have not been able to find out much info about tumors that develop on both the pituitary and adrenal at the same time. The endo thinks that the one on the adrenal developed as a result of my system being kicked into high gear by the pituitary tumor???

Well the journey has been and continues to be difficult and frustrating but at least it feels that I am finally moving in the right direction. It is scary that everything was clear just a few months ago and now they have found two tumors. The endo would like for me to have petrous sinus sampling test done but the insurance co. doesn't want to approve that because "the test is not necessary for diagnosis", however the endo feels that it would help to rule out an etopic source. Maybe the neurosurgeon can help with that I hope.

I am ready to move forward even if it is at a terribly slow pace! Cushing's has greatly impacted my life and I am a busy mom who wants to be healthy again! I would appreciate any input that other Cushing people can give. Thanks, Cat.

Update September, 2006:

I underwent surgery to remove an ACTH dependent pituitary tumor 1 year ago. Since then, my adrenal tumor has continued to shrink. The surgery wasn't as bad as I thought it would be and I recovered fairly quickly. I was able to return to work after 1 month with a reduced schedule and have lost about 45 lbs. in the last year.

Unfortunately, my 1 year post op MRI has shown some tumor growth. I am meeting with doctors soon to decide what the next step will be. I am not cured, but surgery to resection definately improved overall my quality of life.

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