Prolactinoma and Pregnancy

[Chipper10]

Hello,

I have a 2.5 year old DD that I breastfeed for 18 months, during which time I did not have a period. I gave up breastfeeding to get my cycles back and get pregnant November 2008. To cut a long story short I have been diagnosed with prolactinoma, a benign growth on the pituitary gland. Started taking medication for this in July and 8 weeks later I finally got a period. I started TTC, got pregnant in October but then sadly mc in December. So back on the meds and waiting again for my periods to resume - it has been nearly 5 weeks.

I was just wondering whether there were other people out there that had/have this. It feels like I have been on a roller coaster and the mc has nearly taken it all out of me, plus with my history I am terrified that it will take me longer than normal to get periods back so I can TTC again. Part of me wants to give up TTC so that I can get on with my life as it feels like I have put so many things on hold in the hope that I will get pregnant - I just don't know what to do.

Thank you for your help

Hi - I dont' have this "yet" -been diagnosed with high prolactin levels, not been able to conceive #1 ... only have light short periods. So it is something that is being tested for, am "in the process" of hopefully finding a reason for high prolactin levels (don't know how long it wll take to find out and get treatment!)

Sorry about the mc ... and hte history you ahve had. Was it your gp that prescribed the medication or an endoctrinologist? Is it worth going back to them, if you haven't already, to see what they can do medication wise?

I can say I am fed up of TTC#1 for last 16months and also desperate for a child now, but don't know how much longer I can contiue with false hope.

You poor thing I totally understand. Once I was on the medication it took 8 weeks for my periods to resume and I was back to my previous cycle length and got pregnant in 2 months. So I am hoping that it is this quick again, just the waiting for my period is driving me mad. I have been told it should be about 6 weeks post mc, so should be in roughly 2 weeks, however it took me longer than normal to get my periods back after I stared the medication originally. I was told to expect them within the month. So hopefully when you get on the meds you will be more average.
My GP prescribes them but under the direction of my endocrinologist and they got me back on the meds a week after the mc - so they have been absolutely fabulous.
I am on bromocriptine which is ok but does make me feel a bit ill, which was fine before the mc but now reminds me of morning sickness which I found really tough. Though it wears off the longer you take the tablets in my experience.
Obviously I am sorry for your experience but it is comforting to finally speak to someone with the same as me. And once you do have a baby, and you will, soon, you will be able to resume your periods post partum more quickly when you decide to go for another, if you decide to.
I really hope you get your diagnosis very soon.

xxx

Hi Chipper and Kezia!

I started a thread of my own before I saw this one but thought maybe I might join you both here! I have a newly-diagnosed prolactinoma and and heading back to the specialist tomorrow to discuss medication. He has already told me that he would put me on bromocryptine if I wanted to start ttc and something called cabergoline if I did not want to start ttc - I think cabergoline is not safe to take if you are ttc but bromocryptine is - that sounds like your experience Chipper?

I am interested to hear that you said the bromocryptine makes you feel a bit nauseous - well, not so much 'interested' as a bit scared! I'm crap with sickness and have a horrendously busy couple of months coming up with work - in your experience Chipper was the nausea so bad it affected your life/work? Or am I being wimpy?!

A little bit like you Chipper (though I do not already have any DC) there is part of me that doesn't want to go down the route of ttc while trying to solve this prolactin problem - it seems very emotionally-draining. And at times I am not even sure I want to have kids at all. But I do understand how hard it is for you to contemplate ttc when you have the prolactinoma to deal with. Does your doc think the mc was anything to do with your hormones/the prolactin level.

And Kezia - like you I was discovered to have a high prolactin level (after being fobbed off by GP for 2 years because my late periods were, according to him, just 'stress-related!" I finally got a good GP who listened and sent me for blood tests. High monomeric prolactin level was found, then I was sent for an MRI to see if it was coming from pituitary - lo and behold I have a growth there. Have you been sent for an MRI or do you know if they intend to?

If it is any help, I have basically been told by my specialist that if I want to ttc they will put me on bromocryptine and if I want to not ttc, or to wait, then cabergoline is the choice as it has fewer side effects but cannot be taken during pregnancy/ttc. I have been sent off for all kinds of fertility tests (my partner too) to get a clearer picture of whether it would be OK for us to wait a little longer and try to solve the growth first. (I am 33) But as I say, I am not sure that I am up for ttc yet, if at all, so maybe all the fertility tests are a bit irrelevant and I shoudl just start taking cabergoline. I'm due to find out more tomorrow.

Good luck to both of you, I'm sorry to hear that you're both in this position, though I have not been down the ttc route myself I have close friends who are and I understand how frustrating and upsetting it can be when things are slow.

Hi EmeraldGirl1 - sorry you in a similar position. I am just starting out on the road to diagnosis/treatment - so awaiting referral to endoctrinologist and trying to persuade Gp to refer me for fertility tests. Was it your Gp that did that? My husband been referred, his SA a bit below average but apperantly "ok."

I am hoping it is my prolactin problem that is preventing a successful BFP,so if Iwas offered drugs would opt for ones that allow me to TTC ... but like you am scared of how medication might affect me in work (round of redundancies out now so daren't have time off!)

Were the fertility tests helpful, all ok, or are you awaiting the results? I am 34.

Hope your results tomorrow are helpful for you, let us know how you get on.

It's rotten isn't it. My situation isn't exactly the same but I conceived after being diagnosed with a prolactinoma. I discovered I was pregnant with my dd about six months after starting on cabergoline and being careless with contraception having been told it may be a bit harder to conceive. I stopped cabergoline at about 7 weeks when I found out I was pregnant, as far as I know it has no side effects in pregnancy. Never had any problems or side effects from taking it either.
Have been ttc for six months now, still taking cabergoline and hoping for some good news soon. It's all a bit scary but with the tablets there's no reason why you wouldn't go on to have another pregnancy at all.

Hi EmeraldGirl - just wanted to say sickness on bromocriptine isn't that bad, especially if you take it late at night then you can sleep off any side effects. Is just bad now as it is reminding me of the pregnancy I have lost.
It is rubbish and I can't believe I am so desperate to have periods and be a normal woman! Here's to us all getting our wanted BFPs soon.f

I forgot to add that my endocrinologist told me that I was no more likely to mc than average, I was just unlucky.

Hi Kezia - I have just had the results of all the fertility tests and they have all come back good so we are definitely concentrating on sorting out the prolactinoma for now and will think about ttc as and when... So I now have a prescription for cabergoline (like littleshamrock mentions above). It was my gynaecologist that referred me for the fertility tests (bloods, an internal ultrasound, and an HSG) and I was referred to him by my GP cos of the absent periods. I haven't seen an endocrinologist, I don't know why the gp assumed it would be better to see a gynae than an endocrine speciliast - I don't know if an endocrinologist would necc be able to refer you for all the fertility tests themselves but I'm sure they might well refer you to a gynae who could set all that up. I think it's really important, if possible, to have an idea of any other problems you might have on top of the prolactin one - completely reasonable to want to know. Then you can focus on ttc, or not, as you wish. Really hope you get some more answers!! And yes, it is scary, isn't it, to contemplate taking strong drugs when you have work to be doing... but as Chipper says it doesn't even sound as though the bromocriptine makes you feel TOO bad...

Thanks Chipper - it must have been horrid to be reminded of morning sickness And thanks also for the comment from your endocrinoligist about your mc. Such horrid luck but it sounds as though you are on the good road now...?

Thanks also littleshamrock for your post - I'm planning to be super careful whilst on the cabergoline but of course you never know!!! Can I ask how the cabergoline was for you? Did you get side effects worth worrying about?

Glad to hear that your results came back good and it is only prolactinoma you have to sort out. You must be feeling relieved.

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!

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 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!

Hello RacquelWelsh - sorry to hear about your experiences but am pleased that you are due in May - a brilliant time to have a little one. Good luck in your final trimester and thanks for dropping in.

Chipper xx

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

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 sh77 - so sorry to read about your experiences.
I was told there were 2 pills I could take and seeing as I was TTC they gave me bromocriptine. My endo told me it was because it had been around for over 30 years and there were no known birth defects from taking it. I have to take bromocriptine every day, the other drug I would only have to take one tablet a week, is that cabergoline?

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!

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

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...

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

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!!

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

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!!!

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.

Hi Kezia,

I sympathise it is all very frustrating. When I first starting seeing the endo my levels were over 900 - 1000+ (tests over about 3 months). However, I recently had a check up and he told me that last time he checked my levels were 500 and still too high so he has sent me for blood tests and am awaiting results to see whether I need to up my dose.

Are you having periods? Is the specialist running other tests on you and your partner?