Find another doctor.
I had what I call bouncy readings of prolactin myself with weird (aka similar) symptoms and the docs were all over the place. I would push for another endo and do all you can to get into a pituitary center where you can get a neuro-endo. Of course, there are endoduds there so you still have to keep on top of things. Were those the only tests run by the GP and endo? If so, it was not adequate as prolactin can be raised by thyroid abnormalities as well as other hormonal issues - so the endo should have not just repeated the same tests but ran a zillion other ones in addition.
Sadly for women, they tend to push PCOS, menopause and other silly diagnosis stuff on us and not really think THINK that something else is really going on.
I see you are getting copies - read up in the health pages make sure tests are being done correctly (time of testing, lab handling etc can impact results and you want consistency) . You have to know a lot - and a lot of doctors don't know much about pituitary.
Thank you for your reply! Yes she ran TSH which was 1.9 and a bunch of other tests to rule out Cushings etc..which all came back within normal range. I was in touch with my endo yesterday via email where I requested an mri and she is basically saying lets just run the prolactin again once a month for the next three months...She said it is normal for prolactin levels to fluctuate and she is going off of the last reading which was 9. I am going to tell them flat out that I want the MRI done. Based on my symptoms as well as the prolactin reading dropping so many points in a week, something is off! Keeping in mind that the blood tests were both done fasting and at the exactly the same time of day....Boy, this is a lonely road to be on! Thanks for the input!
Was the TSH the only thyroid test? If so - that is pretty invalid. My reasoning is that - the TSH test is a pituitary test and is not going to be accurate if the pituitary is effected by a lesion (it is completely invalid after surgery BTW) so the doc needs to run free T3 and free T4 to see what the thyroid itself is actually doing not just what the pituitary is telling it to do - half the loop is not telling the entire story.
Prolactin can fluctuate with illness (mine went up with mono!) and other stuff so yeah - it can vary - but I was also told that my low levels - I was barely abnormal - meant that I could not have a prolactinoma which I did. I also had another tumor on the other side that was Cushing's. I know a couple of other people like me - we are not common but it is not unheard of.
If you are going to push for MRI - just make sure it is a good one. A pituitary MRI is called *dynamic pituitary MRI* and you want to go to a place that is experienced in doing them. It makes a difference especially with your first as you don't know the size of the lesion - dynamic can help show smaller lesions that can be lost in a normal scan.
Cushing's can not be ruled in or out in one set of testing - so keep that in mind as well.
Your prolactin can fluctuate at different times f the day, at different times of the month, due to stress, or reall anything. An elevated prolactin supresses your other female hormones. When I first had mine tested it was only slightly elevated but my periods had stopped completely. I had an MRI done which showed no mass. That endo pretty much said let's put y on birth control to help regulate your cycle. A few years later perioda stopped again, even on bc and they tested my prolactin. It was slightly higher than before but still not crazy high. Did another MRI and showed a 4x5 mm mass. They started me on meds to lower the prolactin and I found out I was pregnant 6 weeks later.
Hope it all works out for you!!!