Pituitary tumor

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In September of 2013 I started to have prolonged headaches. I went to several doctors and a chiropractor but no one seemed to know why I was having headaches. I finally went to the ER and after dealing with initial looks of dismissal as to why I would be at the ER for a headache, I received a CT scan and received the news that I likely had a pituitary tumor. An MRI confirmed that I had a large macroadenoma.

I scheduled an appointment with an endocrinologist who ran blood panels and confirmed that all of my endocrine functions were greatly reduced and my cortisol level was 0.1 (normal is 12-20). At this point I realized that I was fortunate to be alive. I immediately started taking Prednisone, Levothyroxine, and Desmopressin. I met with a neurosurgeon and scheduled surgery for December. Between October and December, I was essentially bedridden while adjusting to the mediications and my body was going back and forth between freezing cold and blistering hot, sometimes seconds apart. I slept on the couch with blankets and a fan, going back and forth between sweating and shivering.

In December of 2013, I had transphenoidal surgery to remove the tumor. If you are scheduled for this surgery, I highly recommend simply trusting your neurosurgeon and not watching the online videos of this procedure. I won't go into all of the details of recovery but if you are interested, please contact me and I am happy to share. I went back to work about a month after surgery and I should have taken another couple weeks off. I was just ready to get out of the house after three months of sitting at home.

I started testosterone injections shortly after surgery and they make all the difference in keeping me from the hot and cold flashes. I lost all function of my pituitary gland from the surgery so I have Panhypotituitarism and will be in medications and injections for life.

I switched endocrinologists in 2015 because I wanted to start taking HGH replacement injections so I am now a patient at the Swedish Hospital Pituitary Center in Seattle. The HGH is less noticeable for me in terms of day to day benefits than the testosterone injections but I think that long-term it will greatly benefit my quality of life.

In May of 2016, my semi-annual MRI revealed that I have another pituitary tumor growing and we are watching its progress. In November, I will have another MRI to determine the rate at which the tumor is growing and assess whether gamma knife radiation or another transphenoidal surgery is the best course of action.