And It's About Time There Was Some Support For Cushing's!
In 2001 I started to put on weight, despite eating healthy and exercising. I had just graduated High school, where I was a swimmer and member of the Drill Team. I went from being 155lbs to 230lbs in six months. Ugly stretch marks appeared all over my body and dark patches of skin formed around my neck and armpits. When I brought this to my PCP's attention, it was dismissed as over-eating. But my BP and heart rate are elevated so I was refered to a Cardiologist. While taking my BP, she noticed the purple marks on my arms and asked to see my stomach. I remember thinking "What the hell would a Cardiologist want to see my stomach for?" But when she saw the stretch marks, she said the seven words that changed my life.
"Do you know what Cushing's Syndrome is?"
I shook my head dumbly.
"Well, you definately have it. In fact, I'd bet my practice on it. You need to take this up with your PCP."
When I brought it up with my PCP, he thought she was crazy. "You don't have a moon face; so there's no way you can have it". (I DO, it's just not very noticible because my face is small and I use make-up to counter it.) So for seven years, I silenced myself about it. I figured it was a result of my Fibromyalgia. (I've had Fibro since age 11. I'm 25 now.)
In 2007, I went to a new Rheumatologist for the treatment of my Fibro. Now I was unable to sleep for no more than 2 hours. I can't even FALL asleep until 6am. I've tried every sleeping pill and sedative known to man. Nothing works. Meanwhile, my BP is high (200/150) and my resting heart rate is 175. My belly sticks out so far that it looks like I'm carrying twins. Acne decorates my jawline and the hump on my back is now large and very noticible. (It's so big that you can't see the dark skinned ring on the back of my neck when I sit down!) But my legs and arms are not affected. And the headaches; the headaches are unbearable. I cry everyday from the pain. It's like someone is squeezing my brain from the inside. As a result, I was forced to give up my job as a Realtor (which I LOVED).
When the Rheumatolgist saw me, he noticed how oddly shaped my body was, especially for someone who doesn't use corticosteroids. He tested by ACTH and it was VERY high. (568!). He immediately knew I most likely had a pituitary/adrenal problem and sent me to an Endocrinologist. The endo found I also have Type 2 Diabetes and I'm morbidly obese. (There is NO diabetes or obesity in my family.) But when he tested my cortisol levels, they came back normal.
Once again, I was forced to silence the possiblilty of CS. (Even though I KNEW from the beginning that was my problem). When he tested my insulin, there were VERY elevated (236!). He sent me for an abdominal CT, figuring I had an Insulin Secreting Tumor on my pancreas. (Insulinoma). The good news was, no tumor; just a congenital hemangioma on the liver. The BAD news was. . .
MY LIVER WAS OVERFLOWING WITH FAT!!
No, I don't drink. The only time I have alcohol is a frozen Peach Billini at Olive Garden, once a year, on my birthday. Yet here is a 25 year old female with the liver of an alcoholic 60 year old! There was so much fat coming out of my liver that they could barely see anything else! This stumped my endo. He told me to my face that he didn't know what was wrong with me, but wouldn't listen to me about Cushing's. Finally, last month, he decided to check my ACTH and blood serum cortisol for the first time in over a year. He saw how my weight had started to pack on again. I couldn't even buy clothes anymore! I'd buy something that fit then, two days later, I couldn't even get it on anymore! Two of my friends were getting married and I went through 3 dresses in ONE WEEK!
A week after the blood test, I was out with friends at the Sushi Bar, (which is really rare for me. I'm too tired and sick to even leave the house anymore.) At 8pm, I received a phone call from my endo. He said "I know exactly what's wrong with you now and I'm going to send you to UCLA. They'll make you much better." While he didn't tell me the diagnosis, I already knew. Every other blood test he had ordered were things he checked regularly, except the ACTH and cortisol. Now after checking them, he suddenly knew what the problem was?
I met with him the following week. He took me into his office and told me my problem was "cortisol excess. You have too much cortisol". I said.
"You mean like Cushing's Syndrome?" He said
"Exactly".
As a result, he is sending me to UCLA, since Cushing's is out of his area of expertise. Plus if I require surgery and it's pituitary, there is no qualifying Nerurosurgeon in the San Fernando Valley. It will have to take place at UCLA. He said ALL my major problems are the result of the CS, even the Fatty Liver ( a rarer side effect of CS), and not to be surprised if I have more than one tumor. The day I got my diagnosis, my boyfriend (who I love to death and has been very supportive of my medical condition and pays the gas that gets me to my Dr.'s appointments), bought me one of those Journey pendants. Each stone represents the years I've suffered with the disease and commemorates the day I was "officially" diagnosed. As of now I am waiting for the ok from my insurance to go to UCLA.
Cushing's ruined my life. It took away my health and self-confidence. When I look in the mirror, I see this bloated blob of a human being. My friends don't recognize me and people laugh at me behind my back wherever I go. Some of my boyfriend's friends and family members call me a "horse-face" and that he should stop dating me because I'm ugly and sick all the time. Needless to say, now they are speechless.
So is my PCP.
