Step 2- Diagnosis

June 2005

After doing a whole bunch of blood tests I was called into the doctors office. He informed me that my cortisol levels were 6 times higher than those of a "normal" person. Cortisol is is a corticosteroid hormone produced by the adrenal gland. The primary responsibility of cortisol is to activate the immune system; it also is involved with the metabolism of glucose, and can cause elevation of the blood sugar level. Stress increases the amount of cortisol your body produces. In my case it was dangerously high. The doctor warned me that I was not allowed to be under any stress because it could cause me to have a stroke (ya... tell an 19 year old that news and then tell them not to be stressed!) He also told me he wasn't sure what was wrong with me but that there was definately something wrong. He was going to refer me to a specialist because he felt that it would be in my best interest to let a specialist handle it. My mom and I chose to go to Edmonton because my Grandma lived near there and we could just stay with her instead of having to get a hotel.

Once my doctor referred me to Edmonton we received a call from one of the Endocrine Specialists in the U of A Hospital. She told my mom that my doctor had suggested that I may have Cushing's Disease and that I should been seen by her. She in turn told my mom that Cushing's Disease is so rare that there is no way I could have it and that she didn't feel it was nessecary for me to be seen by her. My mom lost it and told her she didn't care what she thought and that she was going to see me anyways. They agreed to see me and made and appointment for me to go to Edmonton. They told me to bring enough clothes for 3 days and that I would have to stay in the hospital.

When we arrived in Edmonton I couldn't believe how big the hospital was. We finally found the clinic we were supposed to go to and checked in. Needless to say I was sort of nervous, not knowing what to expect. Then Ryan stepped in. Ryan was a student who was doing his practicum. He started examining me and asking me a million questions. I told him all my symptoms and concerns. My symptoms were weight gain(mainly in the abdomen area) moon face (swollen, round face shape), inability to sleep through the night, mood swings, brusing easily, and not able to heal after getting a wound. He looked at my bloodwork from the previous tests I had done and looked at the pictures of me before (that my mom insisted that we bring with us). Then he relayed all this information to the specialist when she came in. Ryan later told me that they had known within the first 5 minutes I was there that I had Cushings. They just had to do the tests to prove it.

So I was admitted as a patient (this was done so I could have my tests done sooner. As an outpatient I could have had to wait 3 months just to get an MRI done). I had more bloodwork done, CT Scans, a dexamethasone supression test and had to do almost 2 weeks of 24 hour urine tests. Soon the 3 or 4 days I was supposed to be in the hospital turned into 2 1/2 weeks. During this time in the hospital Ryan came in and asked if I would consider talking to other medical students to help them understand the symptoms of Cushings Disease. I agreed, I thought that if I could help even 1 person to not go through what I had to go through then it would be worth it. Over the next week or so there would be GROUPS of students come into my room and stare at me. I don't think they knew what to ask, and I don't think they wanted to offend me. I just started telling them the symptoms I began getting (weight gain, intteruppted sleep patterns, bruising easy, not healing from small scratches ect.). I sort of felt like a guinea pig in a glass cage having them stare at me like they did but I just wanted to help someone. Then something sort of weird happened. I was sittin gin my hospital room one evening and a doctor came in and told me that he had a question to ask me. He asked me if I would consider having my picture taken so that they could show medical students what a person with Cushing's Disease might look like. I was slightly hesitant, I didn't want my face published in medical textbooks so that everyone could see all my stretchmarks, bruising, etc. That would be EMBARRASSING! After seeing the look on my face the doctor assured me that they would make sure that I would be unrecognizable, and that they would blur out my face so that no one would know it was me. As soon as they told me that I agreed, I wanted to do anything and everything I could do to let people know about about this disease and the horrible things that happen to your body. I didn't want anyone else to be told "You're just fat", or "There's nothing wrong with you". So I signed the waivers and all that fun stuff and the next morning a photographer came to my room and took pictures of me. I felt like I had done something good, and I hope that it has helped someone somewhere along the way!

A couple days laterI finally got to have a MRI done and they found a 1.5 cm tumor on my pituitary gland. At this point I am thinking what the heck is a pituitary gland? Apparently it is known as the "master gland". It is about the size of a pea, and it regulates the endocrine glands in your body such as your thyroid, growth hormones, adrenal gland etc.

I remember sitting in my hospital room on the bed, my mom sitting next to me crying, and all I could think was "Yes! Something IS wrong with me, it isn't all in my head!". I know it may be hard to understand that I was just told I had a tumor on my pitutitary, and I was actually excited. The reason is that I had been to many doctors and they all just kept telling me that I was fat. It was actually a relief to know that all the weight I had gained was not actually something that I could have helped. I was so happy that someone actually believed me when I said something was wrong (other than my mom). So while my mom was sitting on the bed with me crying, I looked at Ryan (he was the practicum student who first looked at me, and he was the one who asked to give me the news) and told him that I was actually happy for the news.

After everything had sunk in and my mom was able to relax a little bit we were both wondering what the next step was.

The next step for me was that I would be referred to another doctor who had more experience with pituitary tumors and who worked closely with a Neuro sugeon. Ryan had to move on with his practicum, but he promised to visit me if he could. I was sad that he would no longer be working on my case because he made me feel "normal" and he made me feel like he understood what I had gone through...