There is a pituitary foundation website for the UK - I can pm you the link if you cannot find it. They may be able to clue you into specific doctors. I am in the US so other than a few people that I know went to St Barts, I don't know centers over there.
The specialist does exist - and they do write papers and do studies.
Did you tell the doc or office when you made the appointment that your prolactin was that high? If the office did not respond at all, it may be that the doctor is not competent in treating pituitary and your wait may not be the best. Not all endos really know pituitary. A normal endo may get... basics, but they don't know the details and really how to treat a pituitary long term.
Did you seek out a pituitary endo at all? I would hunt around for a larger hospital or university with a pituitary center and explain your levels. Get on a cancellation list. You may need to travel. (I go 6 hours one way for mine)
No just that the prolactin was so high and the fact my appoiment is 7mths away
and thats just to see the doc thats not for mri god knows how long that will. Take
any advice welcomed
Ok well that makes more sense. I don't have the range but I am assuming that is abnormal.
You should be going to a pituitary center and a pituitary doctor - a neuro-endo not just a regular endo. A regular endo may or may not be qualified to take care of a potential pituitary lesion. The doctor has to order a special MRI (a dynamic MRI) and rule out other causes.
You should also get most of your hormones checked to see if you have other issues. And you will need ongoing monitoring. The medication will be forever, so you have to have a competent doctor.
Did the doctor rule out any other causes before putting you on meds? Like other meds or your thyroid?
Hi doc said my prolactin level was 1106
have an appoiment with an endo in june in the mean time i am on dosanxit 0.5mg 2 a week
In general, elevated prolactin causes milk production (even in men), sore breasts and a couple of the symptoms you mentions like lack of libido.
The loss of weight and body aches could be a different issue. They are not typical, but then again, not everyone is typical with their tumors.
However, given no other information like test results and not being a doctor I can only tell you that non-specific symptoms (which pituitary tumors have) cannot really tell you much without testing. So you have to see a doctor and get copies of the testing.
So after you see the doctor, please let us know the results and we can comment.