Aa
What should I do next ?
Hi,
I live on a small island in the Caribbean, and have not been feeling well, having lots of headaches and missing periods for up to 3 months.. Periods were about 6 days, and currenlty last maybe 2 days with minimal amount of blood discharge. The medical system here *****, and a possible conclusion came that I might have enterred menopause with my altered level of prolactine (like wtf) I was about 25 at the time. On and off for years, did an MRI on the island, they didnt see anything and told me not to worry and just go about my life.
A year or so later, I was still having headaches like almost on a daily basis, so I flew to Colombia (im thankful my parents have the means to do this) and they discovered a micro adenoma, unfortunately i didnt get the measurements of that but do have the frames. I had elevated prolactine levels in the 60-70's, not very high.
THis is all i had been told or was tested for, are there any other things I should get checked?
I had been put on Dostinex but after 6 months my prolactine levels dropped to about 4 and I stopped taking the dostinex, 2 months later it went back up to about 30. This was about a month ago, the local doctor suggested I continue the dostinex treatment. I can't really tolerate the medication as I get really really tired, with morning where I cant get out of bed, bad headaches that last for days, My left eye has now been twitching for almost 2 weeks it just wont stop. I took the dostinex for about 2 weeks and felt worse bbeing on the dostinex so I stopped this again! It was the beginning of the month of December, and didnt feel like going through all that **** in this month of the year since it's my favorite month of the year. I feel much better when I'm not taking it, is this a smart move or what type of consequences can this have stopping the medication on my own?
I live on a small island in the Caribbean, and have not been feeling well, having lots of headaches and missing periods for up to 3 months.. Periods were about 6 days, and currenlty last maybe 2 days with minimal amount of blood discharge. The medical system here *****, and a possible conclusion came that I might have enterred menopause with my altered level of prolactine (like wtf) I was about 25 at the time. On and off for years, did an MRI on the island, they didnt see anything and told me not to worry and just go about my life.
A year or so later, I was still having headaches like almost on a daily basis, so I flew to Colombia (im thankful my parents have the means to do this) and they discovered a micro adenoma, unfortunately i didnt get the measurements of that but do have the frames. I had elevated prolactine levels in the 60-70's, not very high.
THis is all i had been told or was tested for, are there any other things I should get checked?
I had been put on Dostinex but after 6 months my prolactine levels dropped to about 4 and I stopped taking the dostinex, 2 months later it went back up to about 30. This was about a month ago, the local doctor suggested I continue the dostinex treatment. I can't really tolerate the medication as I get really really tired, with morning where I cant get out of bed, bad headaches that last for days, My left eye has now been twitching for almost 2 weeks it just wont stop. I took the dostinex for about 2 weeks and felt worse bbeing on the dostinex so I stopped this again! It was the beginning of the month of December, and didnt feel like going through all that **** in this month of the year since it's my favorite month of the year. I feel much better when I'm not taking it, is this a smart move or what type of consequences can this have stopping the medication on my own?
A standard MRI report would have the size of the lesion. So if you have the report, you have the size.
No, unfortunately I do not know the size, next time i'll make sure to have it measured.
You can just post once - we can all reply in the same thread.
The tumor is benign, and it is small - do you know the size? But the location is what matters here as it is next to your optic nerves, carotid arteries and sitting on the pituitary - which can effect pretty much any hormone, not just prolactin.
The ONLY thing controlling the levels is the medication - so if you go off, the levels will go right back up, so going off will NOT help. You do need constant monitoring however as it may happen that you may need more or less medication.
Get copies of all your testing and MRI reports all the time - it will help you stay informed.
The tumor is benign, and it is small - do you know the size? But the location is what matters here as it is next to your optic nerves, carotid arteries and sitting on the pituitary - which can effect pretty much any hormone, not just prolactin.
The ONLY thing controlling the levels is the medication - so if you go off, the levels will go right back up, so going off will NOT help. You do need constant monitoring however as it may happen that you may need more or less medication.
Get copies of all your testing and MRI reports all the time - it will help you stay informed.
It's my first time on this site, and I posted the same thing like twice, another user: horselip pointed out that prolactinom
I have only done one MRI and took blood samples in Colombia, on the island they only detected high prolactine.
I am pending a visual field test, still no luck so far..
About the medication, it feels like the doctors are not too well informed about this matter over here and I really dont know if an alternative medication is available on the island. I will evaluate all this and try to start back with the medication as soon as possible.
I always believed or was made to believe that the prolactine level and the size of the tumor correlate, and was being told that by my level of prolactine, it wasnt something to be concerned about. I have not received a review or any paperwork whatsoever explaining how they came to the conclusion that it indeed is prolactinoma, I was just told it is a small tumor and it is benign.
In Colombia they told me that I have to stay on it "for life" or at least till I go for a re-evaluation this January/February (after 1 year) and get tested again, and then maybe I could get off of it, here on the island they told me I can keep going on and off of it to balance the prolactine levels, taking blood samples about every 6 months, if it drops, stop the medication, 6 months later, if its back up, start back again and so on..
I have only done one MRI and took blood samples in Colombia, on the island they only detected high prolactine.
I am pending a visual field test, still no luck so far..
About the medication, it feels like the doctors are not too well informed about this matter over here and I really dont know if an alternative medication is available on the island. I will evaluate all this and try to start back with the medication as soon as possible.
I always believed or was made to believe that the prolactine level and the size of the tumor correlate, and was being told that by my level of prolactine, it wasnt something to be concerned about. I have not received a review or any paperwork whatsoever explaining how they came to the conclusion that it indeed is prolactinoma, I was just told it is a small tumor and it is benign.
In Colombia they told me that I have to stay on it "for life" or at least till I go for a re-evaluation this January/February (after 1 year) and get tested again, and then maybe I could get off of it, here on the island they told me I can keep going on and off of it to balance the prolactine levels, taking blood samples about every 6 months, if it drops, stop the medication, 6 months later, if its back up, start back again and so on..
When one has a prolactinoma, one has to take the medication for life. The medication is what lowers the prolactin and shrinks the tumor, so going off it only lets the tumor have its way again.
Prolactin levels do not correlate to tumor size or symptoms. They should test for other pituitary hormones, as well as your eyes - visual fields and your optic nerve. There are other hormones to check as well - the pituitary can effect any and all of them so you need to see not just an endo, but an endo that does pituitary and a good one.
There is dostinex and another medication, bromocriptine, that you can try - it is one of the older drugs.
Do not stop the medication. If you cannot tolerate either medication, then you will have to have surgery to remove the tumor and if you don't get a superior surgeon, then you may end up taking even more medications for life - but the tumor may dictate that as well.
Prolactin levels do not correlate to tumor size or symptoms. They should test for other pituitary hormones, as well as your eyes - visual fields and your optic nerve. There are other hormones to check as well - the pituitary can effect any and all of them so you need to see not just an endo, but an endo that does pituitary and a good one.
There is dostinex and another medication, bromocriptine, that you can try - it is one of the older drugs.
Do not stop the medication. If you cannot tolerate either medication, then you will have to have surgery to remove the tumor and if you don't get a superior surgeon, then you may end up taking even more medications for life - but the tumor may dictate that as well.
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