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Prolactinoma and pregnancy
Does anyone else have one?


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8 replies to this topic

#1 jjcover

Posted 17 December 2012 - 07:03 PM

I'm 14 weeks pregnant and have very healthy and positive test results for everything but have been termed high risk as I have a micro prolactinoma. I have never taken medication for it but am now referred to an endocrinologist.

Does anyone else have a prolactinoma and has it caused any problems? I really want to be a low risk pregnancy to get into the midwifery group practice for my pregnancy care.

#2 KeepTheFaith

Posted 17 December 2012 - 09:11 PM

Hi OP, I have had a prolactinoma for almost 20 years now (well, it was diagnosed when I was 18). I have taken multiple medications, but for the last 8 years have been on Dostinex.

Mine is on the cusp of being a macroadenoma, but even so, u have not had any issues with it and pregnancy. Obviously you can't take medications like Dostinex whilst pregnant, but my endocrinologist and fertility specialist (the latter for recurrent miscarriages that were unrelated to the adenine, as well as other fertility issues) never deemed me "high risk" because of this. These types of adenomas are known to be very slow growing, so going off medication for 10 months is not a big deal. I'm just starting Dostinex again after having my second child.

I don't understand why you are considered high risk for this? Please PM me if I can be of any further assistance.

Good luck with everything original.gif

Edited by KeepTheFaith, 17 December 2012 - 09:13 PM.


#3 KeepTheFaith

Posted 17 December 2012 - 09:17 PM

Sorry for multiple spelling errors above, darn iPhone auto correct, which won't let me edit my post.

Hope you get my meaning anyway ;-)

#4 Regular Show

Posted 17 December 2012 - 09:40 PM

Hi,

I have a micro prolactinoma that was diagnosed when I was about 13. Initially I was referred to an endo and was put on Dostinex. It was very hard to get though and the pharmacy often had trouble getting it in so I stopped.

I had started it again when I was in my early 20's when I became pregnant with DS (because I was on dostinex). I stopped immediately as I dont think its safe during pregnancy - that or they didnt know much about it back then. Its considered a fairly new drug even now.

It was a high risk pregnancy because of this (having a prolactinoma). I did not take any medication throughout the pregnancy. If you have any specific questions i'd be happy to answer them.

When I wanted to have my DD I have to take Bromocriptine to conceive as without it I was infertile. Once I was pregnant I then stopped the medication.

I did not need to take it again to conceive my next daughter as pregnancy can sometimes, and in my case, resolve the infertility issues faced with a pituitary tumor.

Since I have had my children I have not gone back on any medication. I am waiting for an MRI just to monitor my situation and see where im at all these years later. Apart from that I have regular blood test to monitor my prolactin levels and thats it really.

Again if you have anything specific your wondering feel free to ask original.gif

Edited to add; Although my first was a high risk pregnancy due to the prolactinoma - they did think it was a bit unnecessary but I guess they did it just to be safe.

My subsequent pregnancy I got into the Midwifery Group Practice and it was fantastic. original.gif

Edited by Cadie, 17 December 2012 - 09:44 PM.


#5 KeepTheFaith

Posted 17 December 2012 - 09:46 PM

Hi Cadie, may I ask why you were considered high risk with a prolactinoma? As I mentioned above, I never was, and I don't understand why having one makes us high risk- I was told it grows so slowly that it was unlikely to cause any problems whilst pregnant. Like you, I needed Dostinex to be able to conceive, but I now have to take it again.

It's not as if having lots of prolactin in your blood is odd during pregnancy, obviously...

#6 Regular Show

Posted 17 December 2012 - 10:02 PM

QUOTE (KeepTheFaith @ 17/12/2012, 10:16 PM) <{POST_SNAPBACK}>
Hi Cadie, may I ask why you were considered high risk with a prolactinoma? As I mentioned above, I never was, and I don't understand why having one makes us high risk- I was told it grows so slowly that it was unlikely to cause any problems whilst pregnant. Like you, I needed Dostinex to be able to conceive, but I now have to take it again.

It's not as if having lots of prolactin in your blood is odd during pregnancy, obviously...


Hi KTF,

You know what, im not really sure! Im guessing they just didnt really know what to do with me to be honest. I think maybe my Dr referred me as high risk - then the Dr at the hospital thought it was unnecessary but just went with it.

They didnt monitor my blood obviously during pregnancy because your prolactin goes up anyway. I think there is a slight risk in pregnancy that the tumor can grow just as it can also shrink with pregnancy so im thinking maybe that is why but they would have no way of monitoring it anyway.

I think its pointless being classed as high risk fwiw.

#7 wattle-bird

Posted 17 December 2012 - 10:19 PM

You may be able to do both - ask the endocrinologist if low risk midwifery care would be an option if you also still came to see the doctor and did visual field tests +/- anything else they want to do to monitor you in pregnancy ( don't know, probably depends how big and the adenoma is)

Because its my understanding that the main risk during pregnancy is to you not the baby (as long as you aren't being treated with meds)

So an endo may be happy to share care

Worth asking??

#8 jjcover

Posted 17 December 2012 - 10:19 PM

Thanks so much for your comments. I'm hoping its precautionary and once I see the Endo Ill become low risk. I couldn't understand why it would be high risk when I don't even have treatment for it but I guess once they are satisfied its not growing Ill be good to go. After all it didnt seem to affect my fertility wink.gif

#9 kate_123

Posted 18 December 2012 - 07:54 AM

My friend was found to have this after investigations into why she was not getting her period and having trouble conceiving. She was placed on medication. When she fell pregnant with her first 2 she went off the medication but was advised to breastfeed for minimum length of time (6months) and then return to medication and had regular MRIs to monitor. After her 2nd it had shrunk/disappeared so she is off all meds and has breastfed her 3rd as normal. Didn't realise it was such a common thing!




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