Aa
Prolactine Producing Tumor
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?
Thank you for your time!
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?
Thank you for your time!
Besided the vision problems I am having, are the headaches. I have recently completed a 6 session acupuncture session for the headaches, I have to wait out a week or 2, (one already passed by) to see if it was effective. So far I have had headaches with a terrile one last night, before that I did go to the movies with my niece and watched Narnia (3d) so thinking this may have triggered the headache.
I will call again to see about my appointment for the test, lets just hope they know what they are doing..
I will call again to see about my appointment for the test, lets just hope they know what they are doing..
Hi again-
I think that it is important for you to find out if the health care system of the Netherlands covers your health care. They may very well be willing to even fly you to the Netherlands for treatment and then pay for it. This could help financially.
The doctors have diagnosed you with a prolactinoma because your prolactin levels are elevated and they see a microadenoma. Also prolactinomas are the most common type of growth.The doctors have to go by the information that they have. However, the problem with this this thinking is that your levels are not "that" high. Low Thyroid, certain medications and something called stalk effect could be causing your prolactin levels to be high.
That's what I had, stalk effect.The "Stalk Effect"
"Compression of the pituitary stalk, the structure that connects the brain to the pituitary gland, can cause a mild elevation in the hormone prolactin. This can cause irregular menstrual periods. It is important to distinguish "stalk effect" from a prolactinoma."
And yes sex drive is very much connected to the pituitary gland. You see the pituitary gland makes several hormones. And in some cases just having a adenoma there can cause the hormones to go haywire.
The issue of fertility has to do more with the fact that surgery could very well render your pituitary gland to not work very well. Thus it can affect the hormones for pregnancy. Often if possible surgeon will have you wait for removal until after you have had a child. But sometimes this is not possible.
I am a bit concerned about the vision issues that you are having. But the test is not THAT complicated. there must be someone who does that in Curacao? But, I think that it will be fine to wait until January when you get a full workup, but I do encourage you to get a full workup in January!
Horselip
I think that it is important for you to find out if the health care system of the Netherlands covers your health care. They may very well be willing to even fly you to the Netherlands for treatment and then pay for it. This could help financially.
The doctors have diagnosed you with a prolactinoma because your prolactin levels are elevated and they see a microadenoma. Also prolactinomas are the most common type of growth.The doctors have to go by the information that they have. However, the problem with this this thinking is that your levels are not "that" high. Low Thyroid, certain medications and something called stalk effect could be causing your prolactin levels to be high.
That's what I had, stalk effect.The "Stalk Effect"
"Compression of the pituitary stalk, the structure that connects the brain to the pituitary gland, can cause a mild elevation in the hormone prolactin. This can cause irregular menstrual periods. It is important to distinguish "stalk effect" from a prolactinoma."
And yes sex drive is very much connected to the pituitary gland. You see the pituitary gland makes several hormones. And in some cases just having a adenoma there can cause the hormones to go haywire.
The issue of fertility has to do more with the fact that surgery could very well render your pituitary gland to not work very well. Thus it can affect the hormones for pregnancy. Often if possible surgeon will have you wait for removal until after you have had a child. But sometimes this is not possible.
I am a bit concerned about the vision issues that you are having. But the test is not THAT complicated. there must be someone who does that in Curacao? But, I think that it will be fine to wait until January when you get a full workup, but I do encourage you to get a full workup in January!
Horselip
Hi Horselip, Aloha :)
I live ont he Island of Curacao, part of the Dutch Antilles, altho we 'belong' to Holland, we do not benefit from their medical system - or I'll have to check with my insurance company and see what can be done or arranged given the local limitedness.
I am 28 years old now, and would love to have a child ( in about a year or two) so the docs in Colombia did mention the surgery as an option/radiation, but I didnt know problems could arise regarding fertility if the tumor is removed. So now I know i'd better think twice before I proceed with that option. In Colombia I only took blood samples and 1 MRI (with and without contrast, and it did show up, it's pretty visible, but not knowing what I'm dealing with, i didnt get a report or a cd/dvd, i just have the x-rays from the scan. So after all this could NOT be prolactinoma, this is shocking news. No additional tests were made, but they just came up with a solid conclusion that it IS a microadenoma and presented me with a dosage and drug.
I am going back for a check up, and follow-up MRI in either January or February. If you could tell me, what other type of tests would verify what I have? if it either is or not this..
Here on the island I've been trying to do some eye tests, with no luck whatsoever, my vision has deteriorated a bit, and I have a blurred-like vision at times, lots of headaches, at least 5 days a week to the point I think it's a part of life now, and my left eye has been twitching like crazy for the past 2 weeks or so.
6 months later, I'm still trying to get the "optic field test" done at an eye specialist, we only have limited access to this, and for some reason it keeps getting postponed. Maybe I'll end up doing it in Colombia instead.
Yes, the prolactine did indeed drop in 6 months to 4, which was amazing, but in only 2 months it went back up to the 30's, but i will take a pause and maybe wait out till I go get tested in Colombia to see what the results are.
I really do want to know what I'm dealing with, other things that I have read is loss of sex-drive, well that is the case with me too, I have not have a desire for sex in a really long time.
I live ont he Island of Curacao, part of the Dutch Antilles, altho we 'belong' to Holland, we do not benefit from their medical system - or I'll have to check with my insurance company and see what can be done or arranged given the local limitedness.
I am 28 years old now, and would love to have a child ( in about a year or two) so the docs in Colombia did mention the surgery as an option/radiation, but I didnt know problems could arise regarding fertility if the tumor is removed. So now I know i'd better think twice before I proceed with that option. In Colombia I only took blood samples and 1 MRI (with and without contrast, and it did show up, it's pretty visible, but not knowing what I'm dealing with, i didnt get a report or a cd/dvd, i just have the x-rays from the scan. So after all this could NOT be prolactinoma, this is shocking news. No additional tests were made, but they just came up with a solid conclusion that it IS a microadenoma and presented me with a dosage and drug.
I am going back for a check up, and follow-up MRI in either January or February. If you could tell me, what other type of tests would verify what I have? if it either is or not this..
Here on the island I've been trying to do some eye tests, with no luck whatsoever, my vision has deteriorated a bit, and I have a blurred-like vision at times, lots of headaches, at least 5 days a week to the point I think it's a part of life now, and my left eye has been twitching like crazy for the past 2 weeks or so.
6 months later, I'm still trying to get the "optic field test" done at an eye specialist, we only have limited access to this, and for some reason it keeps getting postponed. Maybe I'll end up doing it in Colombia instead.
Yes, the prolactine did indeed drop in 6 months to 4, which was amazing, but in only 2 months it went back up to the 30's, but i will take a pause and maybe wait out till I go get tested in Colombia to see what the results are.
I really do want to know what I'm dealing with, other things that I have read is loss of sex-drive, well that is the case with me too, I have not have a desire for sex in a really long time.
Aloha from Hawaii!
I live on one of the outer island which is without very advanced medical care so I understand that part of your dilemma. I travel to California for my care. But then I am a US citizen. With the part of Caribbean where you live, so what country are you affiliated with in terms of medical insurance? The way I understand it different areas belong to different countries. I am assuming that Columbia is that such place? If so, I would try to set up to see a pituitary specialist in Columbia and really find out more about what is going on with yourself.
Ok that being said, I don't think that you even know for sure if this is a prolactinoma. I had levels that were over 200. I then had surgery and it ended up that I did not have a prolactinoma but a cyst. But then I've heard of others with levels similar to yours who did have a prolactinoma.
If the medication makes you feel so awful, I don't think that the world will end if you take a month off here and there. In addition it sure seems to me like you could get away with a much smaller dose given that the medication brings your prolactin level down so easily Since that is really the reason for taking the medication maybe you could work with your local doctor to really see what the lowest possible EFFECTIVE dose for you might be.
And then in the meantime you could research this condition more and see if traveling to (blank) for a second evaluation would fit with your goals. You do need to think about fertility for example. If you are young and want to have children surgery might be something that you want to put on hold as it could cause you to become infertile.You might want to have another MRI to see if your prolactinoma has shrunk. It is all information that will help you to know how to proceed.
My main concern for you is that it is important to understand what you are dealing with.
Pituitary tumors can grow and affect your optic nerve and make you blind. It could also press on the carotid arteries and kill you of not dealt with. But then some stop growing or even reduce when you take the medication. I've got a sister in law who had a small prolactinoma that never really held her back. She took her meds ans went on to have three beautiful children. The prolactinoma does not even show up on her MRI's any more.
i hope that this helped you some. Feel free to ask if you think of anything.
Horselip
I live on one of the outer island which is without very advanced medical care so I understand that part of your dilemma. I travel to California for my care. But then I am a US citizen. With the part of Caribbean where you live, so what country are you affiliated with in terms of medical insurance? The way I understand it different areas belong to different countries. I am assuming that Columbia is that such place? If so, I would try to set up to see a pituitary specialist in Columbia and really find out more about what is going on with yourself.
Ok that being said, I don't think that you even know for sure if this is a prolactinoma. I had levels that were over 200. I then had surgery and it ended up that I did not have a prolactinoma but a cyst. But then I've heard of others with levels similar to yours who did have a prolactinoma.
If the medication makes you feel so awful, I don't think that the world will end if you take a month off here and there. In addition it sure seems to me like you could get away with a much smaller dose given that the medication brings your prolactin level down so easily Since that is really the reason for taking the medication maybe you could work with your local doctor to really see what the lowest possible EFFECTIVE dose for you might be.
And then in the meantime you could research this condition more and see if traveling to (blank) for a second evaluation would fit with your goals. You do need to think about fertility for example. If you are young and want to have children surgery might be something that you want to put on hold as it could cause you to become infertile.You might want to have another MRI to see if your prolactinoma has shrunk. It is all information that will help you to know how to proceed.
My main concern for you is that it is important to understand what you are dealing with.
Pituitary tumors can grow and affect your optic nerve and make you blind. It could also press on the carotid arteries and kill you of not dealt with. But then some stop growing or even reduce when you take the medication. I've got a sister in law who had a small prolactinoma that never really held her back. She took her meds ans went on to have three beautiful children. The prolactinoma does not even show up on her MRI's any more.
i hope that this helped you some. Feel free to ask if you think of anything.
Horselip
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
