A new member to the group?
It was great reading all of your posts...as some of you have said, there are not many support groups out their for prolactinomas. They may not have an immediate danger to your health, but still a concern.
I am actually recovering from surgery that removed my prolactinoma last week. Searching on the computer and watching TV is all I currently do!
I was diagnosed with a prolactinoma last summer. It took about 1.5 years to find out what was wrong with me. I was constantly fatigued and did not have periods. Many other things happened from the prolactinoma....my hair falling out (or more so, breaking off as my hair dresser puts it!), fatigued, muscle aches, no period... however, my horomones only showed low LH and FSH, nothing else. Finally, my prolactin levels increased, and an MRI showed the tumor. I was put on cabergoline, however,I fainted multiple times and had orthostatic hypertension...not very good since I am on call most days becauase I work in healthcare.
After using cabergoline, I used bromocriptine. Yep, that did not work! A lot of the same issues and My prolactin went up to over 311! MRI confirmed concernable growth. So I had it taken out.
I have gained about 20 pounds, with most of the went gain in the last year. I have always been active, play soccer, and my roommate says I am a very healthy eater. Since I am 5'3, this has been very hard on my body and self image.
I meet a new endocringologist in the hospital who said that I should slowly lose this weight if I eat healthy and stay active. Gaining weight is a side affect and he was concerned about my weight. I thought I was going crazy, trying all types of different exercise classes and diets! Feels good to know there are other people out there who understand! I am feeling good and my prolactin is currently at 5.