Pituitary tumor
Jun 6, 2016
By: Bryan
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.
This is a very similar story to mine, the only difference was that the pituitary tumour was found in routine MRI scanning for my Multiple Sclerosis.
It was after this that we found all my hormones were on the low side of low and I urgently needed replacement medication.
The recovery period after surgery was difficult and I wont go into it either.
I am now panhypo pituitary as well and can sympathise with the hot and cold flushes etc. Testosterone if kept at the right level controls them to a comfortable level.
Trust you get on OK with your further treatment.
I will have to have a followup scan shortly. Trusting there is no regrowth but I do know that it is quite common.
What level of Cortisol (Hydrocortisone) do you take per day? I take 30-35 mg depending on the temp of the day.
I take 15mg of hydrocortisone in the morning and another 10 mg around noon. I have stress doses of 20mg that I can take when I need additional hydrocortisone due to illness, etc.
hello thankyou for posting your story it is extremely similar to simons. like you he is lucky to be alive :)
