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Prolactinoma and pregnancy
Does anyone else have one?

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7 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 Dawarr

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 Dawarr

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 Dawarr

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...

#5 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??

#6 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

#7 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!

#8 IreneRyanBaby

Posted 16 September 2014 - 04:44 PM

Hi KeeptheFaith,
I have prolactinoma, diagnosed more than a year ago. I was taking Dostinex but since I have fallen pregnant (I am on my 11th week now), I stopped the medication as recommended by my endoctrinologist. However in the past week I have been having severe headaches. I had my blood checked and the result was my prolactin has gone high again. I know it is normal for pregnant women to have high levels of prolactin but now I am not sure if that's due to my pregnancy or my tumour enlarging again. I have submitted the result to the antenatal clinic and they said it is normal as I am pregnant but they would need to call the neurologist to ask for advice.
Did you suffer from the same when you were pregnant? How did the doctors managed it? Did they re initiate medication?
Thank you for your reply. I appreciate every bit of info I could get.


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