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?
Prolactin secreting tumor is the only pituitary tumor that can be cured with medication the other type of tumors surgery at some point probably will be required, thats the good news. They will only operate if it's causing you troubles and or growing to the point where its pressing on near by structures. I remember I wished I had a prolactin tumor so I didn't have to have a operation. I had my operation over 1 month ago. If I where you and knowing everything I know about pituitary tumors, if your going to have a tumor the one you have is the one you want. The medication can and should be able to shrink the tumor. Pituitary tumors are 99% benign. This is all good news right?
Actually, several tumors can now be treated with meds (acromegaly and Cushing's now for limited people). Even so, size is not always a factor for surgery, it is symptoms and location - and you should find a pituitary specialist ASAP by consulting the pituitary association in the UK. Most of my UK buds find St. Barts to be helpful but you may find some place else as well.
The tests and the size of the tumor do not always correlate - but they should not let the levels get out of control. In any case, a normal MRI may not always be normal and normal may not always be normal anyway - I had a tumor when my levels were normal and near normal.
You have to stay on the medication forever for it to work - and if the tumor is not controlled by one med or another, then surgery may have to be considered. You may have to change levels, and you also have to find out if your tumor is only a prolactinoma. You need an expert. You have to stay on top of this.
BTW, I would not want this tumor either...it messes with emotions, periods and makes you feel horrid!
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