Cushing's Info

My journey to a diagnosis was tougher than I ever thought.

In late 2007 I was in a car accident which required me to have reconstructive surgery to my forehead from my head hitting the windshield and the rear-view mirror. I was put through a series of tests and they all came back negatvie; what a relief or so I thought. I went home with physical therapy and rest for four months before I was able to return to work.

Late in 2008 I was accepted into RN school and was begining to learn all sorts of new and rare diseases; like Cushing's. I began feeling sluggish, my hair was falling out, my skin was brittle, my face had red patches, I had acne, I had night sweats, my blood sugars where high, my blood pressure was ridiculously high, and my cholesterol was through the roof, my stomach grew larger and larger and I began noticing stretch marks around my naval; it was time to diet and workout, I was getting FAT and FAST.

I joined Nutrisystems and worked out with a personal trainer 4x/wk 1 hr/day. I went from #180 to #265 in about a years time; obviously this wasn't working so I talked with my doctor who prescribed me Meridia; nothing changed. I still gained weight, I had the moon face and the buffalo hump.

I went to another doctor who said something is wrong lets refer you to an endocrinologist and oncologist. The oncologist did an MRI and there it was millions of little tumors covering my Pituitary Gland. I then went to my endocrinologist who ran more and more and more tests and confirmed on May 5, 2009 that I did in fact have Cushing's Disease.

I was refered to Mayo Clinic in Rochester, MN where I underwent an adenoectomy of the pituitary tumors on June 2, 2009. My Cortisol was over 500 at time of check in for surgery, the next day post op it had dropped to 1.8 putting me into Addisonian Crisis. I remained in the hospital for a couple days and then went home to rest for several months before returning to work.

Since 2009 I have lost over 50 #'s, my labs, blood sugars, blood pressure, cortisol, and hair have all returned to normal!! I still need to get back to 180#'s but it is a work in progress. My only residuals are "Cluster" headaches and swelling in my hands. Although this is a very condensed version of my story I am thankful to have been in nursing school studying this disease, because without me pushing for a Cushing's Diagnosis who knows how long it would have been to finally figure out what I had.

For patients you need to speak up and tell your providers every little detail, be proactive, research yourself, and if they don't listen go to someone who will. You need to be your own ADVOCATE.

For providers stop thinking that because people become fat that their over eating and not exercising, its rude and offensive. Thanks for reading!

~Alikaye~

Note: Alicia has not authorized her email address to be added, so please add comments to this bio below.