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Quinagolide and conception

(27 Posts)
Christmascookie Sat 08-Dec-12 11:26:25

Hi Everyone,

Please be gentle, first ever MN post! I was wondering if anyone else has any experience of TTC with quinagolide ? My endocrinologist has started me on quinagolide for ? Prolactinoma and I was wondering how long it may take for me to see results / get my BFP. Any advice would be gratefully received thanks in advance! X

RacquelWelsh Thu 13-Dec-12 09:03:39

Hi Christmascookie and welcome to Mumsnet :-)

I had a prolactinoma and took quinagolide for about a year before I got pregnant and had my son in June 2010. I tried dostinex and bromacriptine before that for a couple of years but they didn't work as well.

Since then, I've been given the all clear (no longer have the tumour) as apparently, having a baby can 'reset' the pituitary gland and I'm no longer on any medication and my prolactin levels are normal. I had 6 monthly checkups with my endo and had blood tests prior to each appointment to see what my prolactin levels were. Feel free to message me with any questions.

Good luck!

Christmascookie Tue 18-Dec-12 15:59:53

Thanks RachelW! Was beginning to think I was the only one. Do you mind me asking what your levels were before treatment ? Mine aren't that high (800-900) but that seems to be enough, no cylce of any sort since stopping the pill nearly 6 months ago! I just wish there was something I could see/feel working everything feels so pointless at the mo sad

flixy102 Tue 18-Dec-12 17:09:50

Hi christmascookie. Just wanted to share my situation with you even though its a bit different from yours, as there doesn't seem to be too many of us about!

I had high prolactin levels (about 2500) for a few years, had ct scan which showed no tumour. Went off the pill and had no period for 16 months! Started on bromocriptine and it took 5 months for my period to return and at the last blood test, everything seemed within normal limits so hopefully will get a BFP soon!

Wishing u all the best for your TTC journey! grin

Christmascookie Tue 18-Dec-12 18:46:23

Good luck Flixy102, just knowing I'm not the only one is a massive comfort. Thankyou for sharing your story xxx

RacquelWelsh Fri 28-Dec-12 16:46:37

Hi again christmascookie. My endo told me that anything above 500 with prolactin levels would be enough to mess about with periods (and therefore ovulation and fertility). When I was diagnosed, my levels were 1687 mIU/I but they returned to normal within 6 months or so. It's understandable that you feel a bit down about it all, it is stressful and it's also important to be assertive about your treatment. I'm 41 and wasted so much time patiently waiting to hear back from consultants, Drs etc when I could have been more proactive and chased people up.

When is your next appointment with your endo? Did they give any indication of how long before your periods would return?

Hope you've had a good Christmas. :-)

Christmascookie Sat 29-Dec-12 15:32:43

Hi RaquelW,
Thanks for the advice. Was working over Xmas but still managed some fun! Hope yours was good. My endo has been really good to me, we were colleagues for 6 monthes (made 1st app a little awkward!) and he spent a lot of time going through my options. He was honest though that wait time is a bit "how long is a piece of string" and it would depend on how my body reacted to the meds. It maybe TMI but for the last 10 days or so I've been having "period" pains, don't know if that's a good sign or just a side effect confused I'm just amazed how much your body can mess you about! My fantasy of TTC (romance n all that) seems laughable now!

Christmascookie Sat 29-Dec-12 15:34:14

Sorry just realised didn't answer any questions! My MRI is due mid-Jan and follow up app is in Feb. Hopefully I'll see what's going on then!

flixy102 Sat 29-Dec-12 19:26:53

I was wondering if you ladies could give me some advice. I have my next endo app this Thursday, have been on medication for my high prolactin since last may, dose doubled after 4 months as my periods hasn't returned. In October and November this year I had some sort of 'period' but they were both very light and not very regular. Also there is a query as to whether I ovulated or not. No sign of anything this month yet, -ve pregnancy tests.

So what should I ask the endo? Should I ask for an increase in meds to see if that helps, or a referral to gynae? Or something else? I'm the big 30 this year so don't want to hang around if there is something else wrong!!

Christmascookie Sat 29-Dec-12 20:03:26

Hi Flixy,
Hope you have had a fab Xmas and are looking forward to 2013 (hopefully it will be our BFP year!). Don't have much advice as your a bit further along in the process than me, just ask lots of questions I.e should you be seeing results by now? Also are you still taking bromo? Maybe you could ask if it would be an idea to try a different dopamine agonist like carbagoline or quinagolide? You could also ask if they feel a gynae doc could provide any input. My GP basically told me to keep reminding the endo why I was there (trying to have a baby! ) and that if he tried to discharge me before I got pregnant to demand a gynae referal. Hope all that helps! Good luck for Thurs, let us know how you get on xxx

flixy102 Sun 30-Dec-12 15:19:22

Thanks christmascookie that's all really good advice, you're so right about reminding them why I'm there, to get pregnant! I always assume they know that!

Will deffo let you know how it goes! Thanks!

RacquelWelsh Wed 02-Jan-13 09:12:50

Hi flixy, hope you had a good New Year. As Christmascookie says, reminding your endo that you are trying to get pregnant is vital as they do seem to forget. In the end, I asked my endo if he could refer me for further exploration into my not being pregnant as I was having periods and he was happy to do so BUT didn't suggest that himself. I am over 40 so don't have time on my side. It might also be worth changing drugs but I guess that as you've only (ONLY! it must feel like forever) been on drugs for 7-8 months, they may suggest you wait longer before swapping but some people respond better to quinagolide or cabergoline. I only got pregnant when I was on quinagolide.

My advice would be to be assertive, remember what you want, get clear answers on what happens next and by when. Hope that helps (I'm a stroppy old mare :-)

Good luck!

flixy102 Wed 02-Jan-13 12:42:28

Thanks racquel! Great advice again (where would I be without the mumsnet ladies!).
I went to my doctors this morning and got a printout of my last hormone profile so that they can see what I was at and I will write down beside it what the figures were from the blood tests I got privately a few months ago so they can at least see where I'm at.

The appointments are so far apart that I'm going to try to be very assertive and either get a gynae referral or an increase/change of medication.

Cookiepants Thu 03-Jan-13 05:04:38

Hi Flixy,
Just dropping in to say good luck for today (and also to test out my non-Christmassy name !). Hope all is well, let us know how you get on.

flixy102 Thu 03-Jan-13 16:30:42

Well I'm back! Sigh. The doc said by the looks of my bloods, I may have PCOS. hmm To be fair, I've had my suspicions as I've always had very irregular periods and a few other of the symptoms. My prolactin levels are normal so there is no reason why I shouldn't have had a period by now. My LH is almost twice as high as my FSH.

Anyway, I've to go back in another 6 months, after which if I still haven't had any periods, I will be referred to the reproductive gynaecologist. Oh, and in the meantime I've to loose lots of weight, being as I am, a size 18 16.

So, I'm now on a diet, am staying away from pee sticks cos they are useless and hopefully will have a positive and weight loss-y (is that a phrase?!) 6 months.

Cookiepants Thu 03-Jan-13 17:06:52

Oh Flixy!,
Sorry to hear you have another hurdle. Can't offer you much except I will be on here if you need to talk. Good luck with your health kick, I have decided to start the new year healthier being a size 16 as well (and the rest grin ). Hope you are ok, and remember we are here for you xxx

flixy102 Thu 03-Jan-13 19:31:15

Thanks cookie. smile Not too sure what to make of it all at the mo, because I didn't actually get a proper diagnosis, just a passing comment from the doc.

So I'm going to focus on the positive and plan to shed a few stone, look and feel better and just see what happens!

Cookiepants Sat 05-Jan-13 14:13:41

Hi Ladies,

Not sure if I should make a docs appt, but since its wkend I thought I'd ask you for some advice first . For the last few weeks over Xmas I have been having pain in the pelvic area, it started off like a 'period pain' but now it's more like the sensation you get when you really need to pee ( full to bursting). I'm not constipated (lovely side effect of quin) and I've checked my urine for signs of UTI (nowt ) was just wondering if either of you had experienced similar when you started treatment (maybe uterus starting to stir!) or is this something I should be concerned about? Hope you are enjoying your weekend. I'm gonna try and sleep now as I'm on the night shift! Lucky me grin

flixy102 Sat 05-Jan-13 17:41:33

Hi cookie. I did (and still do) have period like pains every so often, not too sure what they are as I haven't actually had a period yet but they are so period like I'd swear that's what they were!

Can't say I've ever had the 'full bladder' type feeling, but like everything health related, I'd say its worth a trip to the docs to put your mind at rest. Hopefully it's your body gearing up to start work!!

Hope your having a good weekend, despite the nights!!

RacquelWelsh Sun 06-Jan-13 19:08:25

Hi ladies.. flixy I assume if it is PCOS it will be investigated fully when you are referred to the gynae in 6 months time? Good to hear you're looking at things positively and focussing on losing some weight. :-)

cookie don't remember having that sensation when I started having my periods again, first thought was a UTI but you've checked that. Worth getting it checked out if it persists I reckon but as Flixy says, let's hope it's your body warming up for the BFP this year.

We're going to ttc again in a couple of months, pushing it I know but would love another child.

Fingers crossed for us all eh?! Have a good week ladies.... thanks

Cookiepants Tue 08-Jan-13 10:19:37

Hi Ladies,

Thanks for your advice! Docs full already so will leave it another wk and see if anything new. Hope you both had a good weekend smile x

Lewisy Mon 14-Jan-13 23:49:03

Hi Ladies
I had my son when i was 18 i am now 32 and after i gave birth i started to have prolactin problems and was diagnosed with pituitary disease at the age of 20 so so greatful that i had my son when i did even if it has been a struggle sometimes but these days all is good i am married to a wonderful man and we are ttc for 18months.

My prolactin level was at 9004 when i first found out 12 years ago and before i found out i had this problem i had an ectopic and a miscarriage 5 months apart.i am currently taking 225mcg of quinagolide daily and i constantly feel like a zombie but on the other hand my prolactin level is now 427 the lowest its ever been in 12years so we are keeping our fingers crossed that it will happen soon.After 18months its driving me and probably my husband crazy aswell as i do early pregnancy tests every month just so eager to get a BFP! My endo Dr has now moved us over to the fertility clinic and has mentioned that Ivf is an option but we would have to pay my view on this is if i eventually want ivf i would go private as its pretty much the same price as the NHS as i have already had a private consultation for our fertillity options.For just now i am going to continue for the next few month and hope for the best as my mother is going through 6 months off aggressive chemo so i dont feel i need the stress of Ivf at present. oohhh yeah doctor said my miscarriage and ectopic could well have been down my hormone level all being out of sync as i was not aware of my condition at this time so was not on any medication.

Hopefully for us all their is light at the end of the tunnel and we all get a BFP very soon. Good luck and keep on trying xxxx

Feel so Blessed to have my son Lewis who has a great nature and is studying hard in the hope he can become a pilot when he leaves school love him so much for his positive attitude towards his education.

Loads of luck and baby dust ladies xxx

Cookiepants Thu 17-Jan-13 15:29:26

Hi ladies and welcome Lewisy!,

Went to the docs as that "full" feeling wasn't going and I was back to being sick 10 times a day which I hadn't done since the start of my treatment and - BFP! Am still in a state if shock, done more tests in the last week than in the last 7 months just to check I'm not making it up! Only problem now is trying to work out how far gone I am as LMP was my withdrawal bleed last July! Thank you for all your support ladies I hope this is the first 2013 BFP for all of us. Please keep in touch and let us know how you are all doing
Cookie xxx

Lewisy Thu 17-Jan-13 17:26:43

Congrats to you well done and wishing you a happy healthy 9 months i am now 15dpo and period was due yesterday but still no sign just have alot of gurgling in my tummy but scared to test as i have been dissapointed so many times. i have had a regular 28day cycle for 6 months could it be our turn praying it is xxx

Lewisy Sat 19-Jan-13 09:23:51

Prolactin Levels should be low enough for a period as i take 3 x75mcg quinagolide daily now my period is 4 days late first time in a year but got a BFN so so gutted have had alot of boobie pains which i dont normally have. I will keep testing if AF doesnt show up but feels like a waste of money but i have a blood test to get on tuesday for prolactin levels it just annoys me having to wait a week for the results. We have an appointment @ fertillity clinic in feb so hopefully will get it all sorted out soon enough. Dr also said my husband is very fertile least that is a good thing he has healthy sperm and around 200 - 300 million each ejaculation. We just want a baby!

Good Luck to all you lovely ladies i pray all yoour wishes come true x

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