Pituitary tumour.

Hi Gone with the wind and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you're concerned about your recent test results and I know how worrying it can be when you don't understand the reasoning behind a clinical decision.

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily spotted.

It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thank you for your response. I was diagnosed in the year 2000. After suffering for some time with headaches, each and every time I had a blood test it always returned as a negative. First I was given Bromocriptine  which I took for years, then later changed to Carbergoline. My old endocrinologist, a professor, unfortunately emigrated to America. I was put under the care of a new one, who some possibly 13 years ago, put me onto what he called a drug holliday, and to this day I am still medication free. My problem has been with GPs not understanding a pituitary Tumor. But that’s another story. Over the years my sex drive has come to a halt, but every time I have a prolactin blood test, my results always come back the same, my tetesterone is in normal range, but my prolactin is over range at between 600 and 800. When I ask why, there response is that they don’t know, as they can’t understand why my tetesterone is normal but my prolactin is high, all that happens is that once a year I return to hospital to have bloods taken, but nothing changes always the same answers and results. My last result, in December 2022 was given over the telephone by someone who I had never heard of before, she explained to me that my prolactin had risen to1052, but my tetesterone had lowered. I was asked to attend clinic, where I had a range of tests carried out. I then received a letter from the endocrinologist that I normally eat with, it read my tetesterone was in range, and my prolactin was once again back to 800. They have offered me medication to help with my sex drive, but no answers as to why my prolactin is high. I am a little confused to say the least, as to how over the years they have taken blood from me for over 30 years now, to check my prolactin, which had be in normal range, then suddenly it went over range, and they don’t know why, but the sad thing for myself is that they don’t appear to care either. 

Thank you for reading my letter and answering me.