And It's About Time There Was Some Support For Cushing's!
My case all started back in 2006. All my life I was a normal size HEALTHY girl. I was very active in gymnastics, cheerleading, the whole nine yards. I graduated from high school in 2003, never even gaining the "freshman 15lbs".
In 2006 I moved back home from being away at college and started gaining weight. I had gained like 20 lbs. in only a 3 months time. I started going to the doctor asking and wondering what was going on. They kept telling me that I've just become less active and I was getting older "these things happen". I WAS 21 for GODS SAKE... NOT 50 ( no offense)! Anyways, things just started getting worse and worse. I was having menstrating problems which led to PCOS testing. That all came back normal. I continued gaining weight until it was completely unbearable. I was being treated by a psychiatrist for bi-polar disorder and he actually suggested that i get my cortisol levels checked, something my family physician never even thought about. Those test results came back and blew them away. My cortisol levels were really high.
I was sent to an endo, which i now know has never even dealt with Cushing's before. The first time i went to him, he looked at my puzzled and had no idea where to start. He put me through some testing which involved blood test, MRI's , etc. Nothing was showing up on the MRI's yet the blood test were showing that excess ACTH was being released by something on my pituitary. This ended up putting me into a procedure where they place catheters into your femoral arteries, feed them up through your heart, into the arteries in your neck and eventually into your cavernous sinus cavity to take samples. This is all done, by the way, while you are AWAKE. It was the weirdest feeling thing you could imagine. The test results of that localized a tumor on my pituitary to one side.
I saw a neurosurgeon that immediatly scheduled surgery to have this side taken out. The surgery was performed in August 2007. I at this time had gained a total of 70 lbs. After the surgery I showed no improvement and my cortisol levels only decreased by 2 points. The pathology report came back and showed that there was not a tumor located within the side that was removed but that it demostrated hyperplasia across the gland meaning that the entire gland was bad. I continued gaining weight.
The neurosurgeon went ahead and scheduled for me to have the rest of my pituitary removed. The second surgery took place in November 2007. I was now at a 75 lbs. weight gain. After the second surgery I wasn't showing any dramatic results as far as improvement. I actually was STILL gaining weight. I have gained another 5 lbs since the second surgery. I have had my cortisol levels checked and the lab results show that i am not producing. My endo tells me "LAB WISE... you are cured." but he still doesn't understand why i am still gaining weight and having the problems that i have.
For instance before the surgeries i did have the purple striae on my inner thighs, inner arms, and sides, but since the last surgery i have gotten them SO BAD on the front of my belly. They are HUGE! They cover my entire belly! This was all after me being supposdly "cured".
I don't think that this whole process has been dealt with properly. After the second half was removed I was just thrown on medication without having my levels tested first. How do they know I'm even on the right dosages or anything? I haven't been tested for growth hormone deficiency yet, which i'm beginning to see i might really need. My endo just tells me to do what i can on my part as far as exercising and working out to get back to normal. Well i have news for him... working out? ya right... i try to walk around the block and my legs cramp so bad i can't make it back to my house! Dieting? ya right... i've been on a STRICT ( drastically changed food consumption for me) diet for 3 weeks now and have not lost 1 lb! NOT 1!
I'm newly engaged and want to start planning my wedding but there is no way i am getting married the way i look! I want to be back to normal life and my normal size again. Anyways everyday seems to bring a new challenge for me. I really try to hang in there and keep my head high but sometimes it does really get hard. We'll see what happens in the next few months.
