Sorry, this is going to be a little long-winded, just trying to pass any relevant information:
When I was around 19-20, (and living in Town A) I started missing my periods; they were coming every other month, rather than every month. My periods have never been regular, they were always late, but after this went on for a while, I went to see my GP, whom sent me for a blood test, and it was found that I had raised prolactin.
I ended up being referred to my local hospital, was sent for a MRI scan, and further blood tests. At the end of it, the consultant said my prolactin was high, but it wasn't any higher than it would be under times of emotional stress, and since my MRI came back clear, they weren't going to do anything to treat it. Then they told me that I had PCOS, and that I should get my prolactin checked every year since I would need to go on medication if my prolactin did go any higher.
I later moved (Town B), and had my yearly blood test. I was told then that my prolactin was fine (with an air of "Why are you bothering us with this"?).
I then moved again (Town C [I move around a lot]), and had my yearly blood test done. This time I was called in to see a specialist; my prolactin was around 1,100 (I'm in England), and he was horrified that I hadn't had any treatment. I explained that I had undergone investigations in Town A, and he asked if I'd moved before the investigation was complete, since he really couldn't understand why my prolactin had gotten so high. He told me that I would have to start taking medication (Dostinex), but first he wanted me to have an Echocardiogram and another MRI. I agreed, but pointed out that I had already had an MRI, and it had come back clear.
I had the tests done, my Echocardio came back fine, but I had another appointment with the specialist before the results of my MRI came back. The specialist told me to start on the Dostinex, since I had had an clear MRI previously, and he wanted to treat the prolactin levels as soon as possible.
As a result, I have no idea what the results were for the MRI.
I then moved to (Town D). I saw a doctor in the hospital (not sure what he is, to be honest, he works under the Endo specialist), he didn't have my records from Town C, and basically treated me like I was playing the symptoms up. He told me that he wanted to take me off the Dostinex, but did (grudgingly) send me off for a MRI.
A few months later, I saw him again. His attitude had completely changed, he was friendly and sympathetic. My initial thoughts were that he'd gotten my records through at last, and had seen that I did have an actual problem. During the appointment, the he called the Endo specialist in, whom told me to continue to take the Dostinex until December, come back for an appointment in June, and I would be retested to see if the tumor had shrunk at all. This was the first time I'd been told anything about having a tumor. No further information about the tumor was given.
PCOS has not been mentioned at any point since Town A.
I actually took the Dostinex partly through January, since I thought I'd finish the bottle I had, and not really relishing the thought of the symptoms coming back. By this time I'd been on Dostinex for about two years.
I started feeling sick again (bad daily headaches, tiredness, overly emotional), and last week finally went to see my GP to see if there was anything that could be done to relieve the symptoms while I waited for June. The GP sent me off for a blood test, and it came back that my prolactin levels had gone up to over 2,000.
Could this be a sign that the tumor may actually have gotten worse? It seems strange that my prolactin levels are now higher than what they were prior to my starting a course of Dostinex.
Is it likely that surgery will be considered if it does appear that the tumor has gotten worse? Is surgery a more likely option depending on whether it's a Micro or a Macro tumor (I literally only know that I have a prolactin secreting pituitary adenoma), or does that fact that I do respond (so far) well to the Dostinex (no side-effects, and it does reduce my prolactin to normal levels) mean that something drastic would have to happen before they would consider surgery?