And It's About Time There Was Some Support For Cushing's!
Hello everyone. My name is Debby and I just turned 24. I am new here and looking for an outlet after all the craziness I have experienced as of late. Let me start out by saying that a month ago I thought the doctor was going to tell me that I suffered with a standard case of overeating which was possibly accompanied by a thyroid problem. Instead I have since learned that I have a large macroadenoma sitting on my pituitary gland secreting ACTH (Cushings Disease).
In July of 2006 I gave birth to my daughter. I lost a lot of weight while being pregnant and continued to drop after she was born. Other than being gestational diabetic there were really no other complications. And honestly I would hardly call me losing weight a complication. Getting on the scale and seeing it drop every week was probably my favorite part of the whole pregnancy, especially after eating a whole box of Oreos. Anyway, about 6 weeks after she was born I noticed a terrible blistery rash on my left hand and went to the ER. The doctors diagnosed it as dishydrotic eczema and told me that it was a combination of wacky hormones and probably a reaction to the soap in the new restaurant I worked at.
Another 6 weeks after that I noticed that I was having a hard time reading and focusing. I assumed that because my diabetes had gone unchecked during my pregnancy that maybe I had damaged my eyesight and figured I was just going to need glasses. Still it was no big deal. More time passed and I realized that my hair was falling out and that my nails were pitting and becoming brittle. All of these things I chalked up to a hormonal imbalance brought on by the baby and that it was taking me longer to regulate myself out. Then the weight thing began to happen. I gained 10 pounds which to me seemed to happen over night. I thought, "eh, you have a baby, you get a little older, you pack on a couple of pounds, these things happen". Then another 10 creeped up on me, then another 10, and another! And to top everything off I was still lactating! I stopped breastfeeding at 4 weeks, but I just couldn't seem to dry up (sorry to the menfolk if that is TMI).
I felt and looked disgusting. I was averaging 6 to 7lbs a month no matter what I ate and my energy level was non-existent. It's needless to say that I was starting to suffer with severe depression.
I started looking into radical diets. One in particular involved 500 calories a day and injections (I was desperate). However a requirement of the diet was the company had to have a CBC on file for you. So off to the doctor I went. I walked into the office and told them I wanted some blood work done. I then decided that maybe now would be a good time to ask him about the other symptoms I had been having. Keep in mind that although everything I had been suffering with was slowly driving me out of my mind, it was the weight gain that was foremost in my thoughts. As I began to describe my ailments to the doctor he stopped me in the middle of saying blurry vision and lactating. He said he didn't need to hear anymore and that I needed a complete Metabolic Panel and a Brain MRI to search for a tumor. Hormonal imbalance and Brain tumor were two opposite ends of the spectrum as far as I was concerned and I left the office thinking the doctor was a nut.
Two more weeks passed and everyone of my symptoms were intensifying, so I went in search of an endocrinologist. I walked in, barely got out the list of all my symptoms, and she was already writing me a prescription for a brain MRI. I figured if two doctors were saying the same thing then maybe I needed to look into this.
On November 2, 2007 I discovered I had a macroadenoma. I'll skip all the medical terms they use and break it down. A large tumor is growing on my pituitary and up into my brain.
At first I was not worried in the least bit. I have become a google expert and every single piece of information that has passed between the doctors hands to my mine be it blood work or what not, I have googled the possibilities. After many a late night researching pituitary adenomas I came to the conclusion that because I was lactating I must be suffering with a prolactinoma. No big deal, take some pills and the tumor will shrink on its own. Now after several tests I have learned that I am secreting high amounts of cortisol and my creatinine levels are through the roof. I am schedualed to meet with endocrinologists and neurosurgeons at Johns Hopkins after the Thanksgiving break.
I am terrified at the idea of surgery, but willing to deal with it if it means returning to normal. I would love to hear from others who have had similar experiences and especially from those in the post surgery stage.
Thanks for taking the time to read.