Slowmoving's Journal

I have been having trouble with my cortisol level being low - very low. So my GP finally referred me to a endocrinologist.  He is supposed to be the best in the area. In fact I tried to get in to see him around 8 years ago, but he wasn't taking any new patients. He still isn't, but my therapist is a good friend of his and was able to pull some strings and he agreed to see me. I saw him 3 months ago and he was very thorough, took blood, and again my cortisol was low. He immediately ordered a cosytropin test - which tests for Addison's Disease. I went to the JC Lewis Cancer Center for the test. As soon as they put the cosytropin in my IV I went into a full blown seizure. The nurses have never seen this, so they called Dr. DeHaven's office (I saw them do this), but continued on with the test.  The incompetent staff took 2 weeks to get the results back to me. They said, "it looked fine" we'll see you in August.

So 2 weeks ago I finally was able to see DeHaven again. I asked him about my test results and the seizure. He knew nothing about the seizure and was quite upset. The nurse had already taken blood as soon as I had arrived, so he ordered another cosytropin test ASAP. He didn't like the results anyway. The first blood test in test came back abnormal, but the final test came back normal - the lowest normal number it could be. But as I said earlier he's very thorough and started asking more questions. Eye sight, headaches, weight loss, bowel movements (color, consistency, frequency,etc) Then he said I think I've got it - tore up the cosytropin test requst and wrote up a new test : growth hormone deficifiency.  It was scheduled for the next Friday. I had to fast from 10 pm on Thursday until I took the test on Friday. I got to the office and they took 5 vials of blood and then gave me a shot in the butt. I was then taken to a room where I laid down with a blanket and pillow. Every 30 minutes for the next 2 hours the nurse came and took more blood. After that, I was given fruit juice and crackers and told to check with them on Tuesday. As usual I went on Tues., no news but they printed out a previous blood result. I went on Wed. with again no results. Thursday the girl looked at the screen, printed something out, and went and got my chart. Then she went out the back door. That's when I knew something wasn't right.

The nurse that did all of the testing the previous Friday came to the window and said Dee I need for you to come with me. My legs started shaking at that point. We went to the lab area where others were getting blood work done and she said you have "growth hormone deficiency." What is that? She said she would give me a booklet, but basically it meant that I would need to take a shot  every night for the rest of my life. I asked about my eyes and headaches if that was part of that. She said we needed to schedule an MRI immediately to determine if I have a tumor in my pituitary gland first. That is one of the reasons that could cause GHD, but the damage is already done. I asked her if it would have to be removed. She said yes whether it's malignant or benign. So needless to say, I was shook up. It also causes changes in skin lesions. I had just asked a friend the day before to look at 3 places on my chest, because I didn't like the way they looked. I've had basal, squamous, and malignant skin cancer. So now I have an appointment with the skin Dr. next week, an MRI this week.

All I could think of is that I've let my hair grow out for the last 3 years and now I may have to get it shaved off. I know that sounds terrible when compared to a tumor, but I can't think about that. It's too much coming on the heels of us losing our house, the money problems, the pain, etc.

This is very rare for an adult to get, but it can also be caused from a head injury -  such as a car wreck. It can mimick fibromyalgia - joint pains, muscle pains, swelling in feet and hands. The only person who knows to look for it is an endocronologist. Just a side note if anyone's interested.