Hi, I am sooo glad i found this site, finally someone who knows how im feeling and understands what i'm going through.
I have been sick for almost 5yrs now. I am 27 and 5 years ago i was a healthy independent girl who worked full time,coached high school cheerleading and had my own place. I started having really bad chest pains and went to the ER a number of times.. they said it was anxiety and wanted to put me on depression meds. All blood work i had done was normal,the next er visit less than a month later my platelets went from normal to over 2million. They had an oncologist come in and tell me i had cancer.. They did a PET scan and it showed that all of my bone marrow was reactive to something but could find no cancer. They did a bone marrow biopsy and saw that there was no iron at all in my body. At that point i was put on Chemo and Iron by IV for 6 months and by the 8th my platelets were at the high end of normal so we thought things were going to be better. Three months after that i was diagnosed with the start of cervical cancer so i had a LEEP done and we thought ok now im better.
We started noticing that my already round face was getting rounder and that i was getting the hump on the back of my neck. I was always hurting and had a fever. i havent gone one month without being in the hospital since. They checked my thyroid and that looked ok. My cortisol levels at times were high but when they would check them again they would be normal so they ruled that out.
They just kept telling me i was a huge mystery. About a year ago out of no where my heart rate went from always being normal to being in the 180's. I had a huge cardio work up and of course everything was ok so they put me on a beta blocker to slow it down. I saw at least 5 endocrin doctors and each doctor would say I dont know and i think you need to see this specialist. So i went to a ton of doctors who all had the same answers...we dont know.
I am lucky enough to live very close to Johns Hopkins Hospital and found a great endocrin doctor there. She said we will test you over and over again until we find out what is going on. After a ton of cortisol tests they diagnosed me with Cushings in May 2009.I have what they are calling "flare ups" so if they tested me when i wasnt having one my cortisol would be somewhat normal.
They found a tumor on the right side of my pituitary gland and i went in for surgery in June to have in taken out.. They cant promise that this is the cause to all of my problems but in my eyes its the best gift i could ever get. If it wasnt for the endocrin doc being persistant i would still be searching. Now that i know the symptoms and have learned more about it i have realized that i have almost every symptom.
I cant wait to feel better and get back to the old me. I know i am not out of the woods yet but im getting closer!
Update November 23, 2009
This is an update from my first bio post a few months ago. I had surgery at Johns Hopkins Bayview in June to take out part of my pituitary gland which had a small tumor on it. The surgery went good however i got diabetes insipidus which last 3 months. In August i started having chest pain and it turns out that i have multiple blood clots in my lungs so i am on coumadin and will need to be on it for 6-8 months. Since June i have done salavary cortisol tests to see if i was cured. All of the tests have shown that i still have Cushings and today my doctor told me its time to move on to the next step. I am meeting with a doctor who runs the gamma knife which is a form of radiation in a few weeks. I also am going to meet with a surgeon to talk about having both of my adrenal glands taken out. Both options have life changing decisions because i will need to be on hormone replacement along with steroids and may not be able to get pregnant on my own. It is a lot to think about and i am going to have to weigh my options. It is hard because i am only 28 and the decision I make will be with me for the rest of my life.