Prolactinoma and Pregnancy

hi,
was good to read other peoples messages about having prolactatomia,i am going threw the process now and have had CT scan and MRI scan and now just waiting to get results,nerous about what medication i will b given TTC,since my husband and i have been trying since jan 09,im 26 but i felt so alone when i was told what was the probable cause of my high prolactin was,nice to read how others are being so strong about there diagnoses and this has helped me a lot to understand things more

Thanks for info and best wishes.

Hi Chipper here - my levels were over 1000 when I was referred to the endo.
Good luck with your next appointment.

Hi, no MRI offered. You are right, need to press the specialist! Have got another set of bloods this cycle to have, so am hoping 3 sets of bloods and still no bfp will allow for some medication.

Chipper, do you know what level your prolactin was before they diagnosed the problem/growth for you?

The only way I think I may be ovulating is I got peaks this month on CBFM but none at all last month. Still having periods, though short and light.

Hi - great your results lower. How interesting they say your results still too high ... you on medication to lower it below 500?

My fertility consultant is the endo specialist but he will not treat it below 1000. So frustrating - what would you recommend to get it treated, as it would be much cheaper for nhs to treat that then do anything else. I have had blood tests, doing repeated blood tests now (progesterone quite low on 21 day blood test) and am waiting for a scan and go back mid-June.

A friend is under same consultant, saw a different dr to me though and got repeat bloods, ultrasound, hsg and an appointment in 6 weeks not 12. Her progesterone and prolactin all good. I don't know what I am doing wrong!

I have seen a fertility consultant now who is specialist in endocrinology issues - he said my prolactin level at 843 wasn't high enough to treat, they wait till it gets to 1000 - has anyone had theirs treated below 1000?

The info I have and from gp says it needs to be below 500 to conceive and after 19months ttc#1 I am so frustrated.

Just a quick question for those on this thread who've taken cabergoline... I'm managing fine with it but since I increased my dose, I've been having problems with (ahem) constipation. Is this something anyone else has suffered with on the drug? It's very unusual for me and it started just a few days after I upped the dose, so I can't help thinking it could be related...

A paranoid Google search of the cabergoline side effects does suggest it's a possible side effect but not in everyone, clearly.

Back to the prunes, I guess!!!

Emeraldgirl, you're very welcome, hope the PMT passes. My endo was really surprised at how bad cabergoline had affected me and said he'd never seen such a strong reaction as mine. However, when I did some research (I mean Googling...!) there are plenty of women who had similar reactions.

Take care

Racquelwelsh, you are a star, thanks so much for the summary of your 'weirdness' if that makes sense!!

I have felt a little like you describe this past week, but as I have only been taking it (and at a VERY low dose, the dose is due to be doubled in 3 more weeks) for a week, I think it is probably too early to link it to the cabergoline. I think (hope!!) is is more likely to be PMT... but great to get your perspective so I can keep an eye on it. Mind you, I'm pretty useless and flaky at the best of times so maybe it won't be apparent even if there is a problem

But good to know also that you did well on another drug. My gynae did mention norprolac as option number 3, as it were, if I had probs with cabergoline. Glad to hear it worked for you!!

Hi Emeraldgirl, glad to hear a GP has listened to you, it is very frustrating about not taken seriously...

On cabergoline I felt really sleepy, just not with it at all and then after about 2 weeks of taking it I felt pre-menstrual and this became worse as I found myself unable to deal with the simplest of things (like phoning BT or anything where I might have to be assertive) and I lost complete interest in work and became quite depressed within a couple of months. I stopped going out, stopped interacting with people, didn't feel like exercising and was a right miserable old bag!

I carried on taking it for a while until my DH suggested (after yet another bout of crying) that it was the cabergoline that was making me so unhappy as he'd never known me like it. (Which of course upset me!.. honestly, I was a wreck) He came with me to the see my endo who was seriously concerned about my state of mind and suggested I stopped taking cabergoline for 6 months then re-assess the situation. I felt right as rain after 3 weeks! I was re-scanned after 6 months and as the tumour had grown I was then put on norprolac which has agreed with me.

Not sure what'll happen after LO is born as I can't take any drugs if I'm breastfeeding. Hm. Will cross that bridge when I come to it.

Really wish you well, anything I can do to help, let me know

Hi again everyone, haven't checked this in days!!

sh77, the doc didn't explain exactly why cabergoline wasn't safe to take if ttc but was very clear that it was not a suitable drug to take while ttc... there's a post on this thread from someone who was taking cabergoline and accidentally got pregnant while doing so - maybe have a look at what she said? Sorry I can't be more helpful!! I'm a bit rubbish with medical stuff at the best of times. So sorry to hear about your losses

RacquelWelsh, what a nightmare you have had!! I too was fobbed off by docs but luckily only at the GP stage - kept being told that my irreg periods were just stress, and no, they didn't need to refer me for blood tests, and no they didn't need to have an ultrasound of my ovaries to see if anything PCOS-related etc etc... FINALLY a GP listened to me and within a few weeks I had blood tests and an MRI that confirmed a prolactinoma. Doctors can be so great but sooooo frustrating when they don't listen and just dismiss you as a whinger!

Also racquelwelsh (i love your username) can I ask how the cabergoline made you feel? I have only been taking it for a week but have been more sleepy than usual and feeling very PMT-ish, but my period is looming so it could be that, of course...

Thanks Chipper10, yes, everyone says it's a good time to have a LO. Also, I was told there are 3 pills you can take, even if you are trying to conceive, cabergoline, bromocriptine and quinagolide (otherwise known as norprolac which is the one I was taking when I finally got pregnant). I took it for just over a year, and then it was 2 weeks into my pregnancy before realising I was pregnant and stopped taking it. I've been told that everything "should be fine..." I took cabergoline once a week (on a Friday night as I went to bed)

InThisSequin, good to hear you've managed to have two children, interesting that you had to test for being pg if there was any chance you could be, I was never told that..

sh77 So sorry to hear about your losses, can only imagine how you must've felt and wish you all the very best for the future.

Keziahopes If there is one piece of advice I wish someone had given me it was not to wait for GPs, specialists, consultants, endos (whoever) to get back to me.

As I'm 38 and was diagnosed with this when I was 35 and trying to conceive, I wasted so much time as I politely waited for my GP to get back to me. I waited over 3 months to be referred to a surgeon as my consultant decided it was best to have the tumour removed. When I finally chased up the appointment, my file had got lost in the system and I had to wait another 4 months to see the surgeon. When I did see him, he was outraged that I'd been referred for surgery as I was trying to conceive and shouted (yes, SHOUTED) that it was completely inappropriate and to go back to my consultant and ask to referred to fertility consultant.. which I did and that took another 6 months..

In the end, after a massive hissy fit and with the support of my DH, after every appointment, (my DH came with me and had a list of questions) we asked how long we'd have to wait, who to chase up if we hadn't heard and how to make a complaint. This definitely helped as things moved much quicker when we asked these sorts of questions.

Long rant but thought it might be helpful. Good luck to you all

Sorry to hear of your experiences sh77.

And encouraging to hear of children born to you Inthissequin...

My Gp has spent weeks doing nothing, despite promises, so now waiting for my 21 day blood results, the consultant I am under for something else to contact him and when I go back at end of Feb (with reinforcements with dh!!riduculous, yes,) I will insist on a referral unless Gp can prove to me otherwise that I have prolactin below 500!

Hi

Thanks for starting this thread. Very useful to read other experiences.

I was diagnosed with a prolactinoma in 2006 following headaches, mid cycle bleeding and high proloactin. My GP referred me to a gynae who did bloods. He then referred me to an endo. I was put on cabergoline to stabilise my prolactin. I had mild side effects initially - headaches, feeling very tired, light headed but it passed after a few weeks.

My endo never mentioned anything about not taking cab when TTC. In fact, he said, it helped fertility. I fell pregnant a year later. Sadly my baby passed away after her birth and I was desperate to have another baby. I started on the cabergoline again and fell preg after 3 months of trying. That preg ended in a missed MC. There is a chance I have a clotting disorder but having repeat blood tests.

emeraldgirl did your doc give any explanation as to why cabergoline is not safe to take if TTC? Very intrigued.

Hello, just to say that I had this, and used cabergoline (this was in 2000) and I had to test for pg if there was the slightest chance of me being pregnant - I only took it for two months and was pregnant. Had DS1 in 2001, and fell pregnant without using cabergoline within three months of trying again in 2006 - being pregnant can redress the hormone balance.

I didn't feel any side effects from cabergoline, but as I say, I wasn't on it for that long.

Good luck to you all - my 8 year old reading Asterix and 2 year old watching Harry and His Bucket Full of Dinosaurs are proof that this can be over-ridden.

Hi everyone, interesting reading this thread. Really sorry to hear what you've been through too.

I was diagnosed with a 9mm prolactinoma in August 2006 and since then have tried cabergoline, dostinex and finally norprolac.

The first two really made me feel unwell, more hormonally than physically and I honestly felt at times that I would kill myself if only I could be bothered. It was really nasty. I stopped working full time as I felt so rough. Me and DH tried to conceive for over 2 years after my periods came back to normal and had just been referred to a fertility specialist in August last year when I got pregnant. I am now nearly 6 months, due in May.

It took 3 years for the diagnosis of the prolactinoma with various Drs saying there wasn't a problem (!)

Good luck to you all!

Can honestly say I've never felt any side effects from the cabergoline at all. I remember feeling quite scared before starting it as there seemed to be so many potential side effects but I'm so glad I took it and continue to as without it I wouldn't have my dd. Good luck!

Hi Emaraldgirl1 - great news from your tests, that must be such a relief for you.Being able to focus on one issue at a time sounds helpful for you. And thanks for the information on how you proceeded - think I need to chase my Gp asap for right referrals!