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Jennifer C's Story

Wow, where do I begin to tell my story? I am almost 25 years old and had my tumor removed 3 months ago. I began to notice symptoms in 1998. I went to an endo in Columbia SC who told me to diet and work out more. I have always watched my food intake and worked out doing different things. I tried doing more, but just could not understand what was happening to my body. My college roomie and I laughed about my height getting shorter, and I just thought I was destined to be "fat for life." I have always had "female problems" so it was no surprise when my doctor told me he thought I had PCOS. I graduated from college and began teaching. I could lose a little weight, but then easily gain it and a little more. I was having the weakness, a lot of colds and stuff, and high blood pressure. I was put on pills for the blood pressure. I moved to a new job and a new life so I thought. I got very ill in November and went to a local doctor who said I had a kidney infection.

He was worried about my overly high blood pressure and put me on more medication for it too. The antibiotics for my infection did not work and I was hospitalized the next weekend. There they found everything was low in my body. I would not eat and didn't care to drink either. I was kept there for a week and sent home on more blood pressure pills. The meds did not seem to be doing too much for me and I was beginning to feel sick one day at work in January. Our school nurse checked my blood pressure and it was high. The next week she checked it again and my principal was informed and she sent me home and told me not to come back until I knew why it was high and had it under control. So that began my journey.

For 2 months I had various MRI's and CAT scans run. I had 4 doctors looking for anything. I was being sent to the Medical University of SC for a sampling test and one of their top neurosurgeons saw my case. He wanted to see me himself. He did and asked that I undergo one more MRI on their machine. I did and it found a tumor on my pituitary.

Dr. Patel scheduled to remove it on April 23 (2004). He removed it and my spinal fluid sac would not reseal. He had to make an incision in my thigh and put some fatty tissue into my nose cavity. I stayed for 5 days at MUSC and was sent home on basic bed rest. A week and a half post op I was pulled off of my prednisone and put in for a cortisol test. They wanted to do 2 of them back to back. I was off of the meds for a week then tested.

On my second week off, I could not last the whole time. I began to vomit, and lose consciousness. I was given a shock dose of meds. We waited a few weeks and tried it again. This time the test showed hardly any cortisol in my body. I was placed again on prednisone and again pulled off of it to test. It was then determined my thyroid no longer worked. I was not put back on the prednisone. My levels are still too low, but my body is just not receptive to the meds.

I will keep everyone posted. Please feel free to contact me for questions, to vent, anything. I felt so alone until I met others in the same condition as myself.


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