Hi.
I am new to the forum. I have so much to learn and understand. Sadly the pituitary team I see aren't that good at informing and I often get no answers.
I had a macroprolactinoma which was removed last year. I had an apoplexy in 2017. I have Hyperpituitarism and so need hydrocortisone and thyroxine. I have a few questions which haven't been adequately answered by the pituitary team at the hospital. I would be grateful to learn more from others. It also have EDS, POTS, Mast Cell issues and Small Fibre Neuropathy, IBS/Gastroparesis and scoliosis etc.
1. I was told this week that they might take me off hydrocortisone. Is this possible as I've been told that I will be on it for life?
2. What has caused my total body hair loss? I was told it was age-related? I know it is linked to the hormone issues, maybe thyroxine?
3. What is the recurrence rate for prolactinomas? I fear having another surgery. I had to have one as my vision was being affected. I was in severe head/face pain for 7 weeks after surgery.
4. Has anyone survived the recurrent sinus infections after surgery? I am to see the ENT specialist this year.
Any tips on managing things with all the meds etc? Thanks in advance.