Told to come off metformin? PCOS

[Cafeaulait27]

Hi everyone, had my booking appointment today and when telling my midwife what medication I was on she told me to come off metformin because they’d recently had an email saying a study had come out that showed it increased the risk of having a small baby (SGA).

I said I was nervous to come off it - as metformin worked for me to regulate my cycles I feel that it shows it does some good for me, and I must have had some insulin resistance (common with pcos) which is being managed with the metformin. Every doctor up to this point has told me to stay on the metformin and I have read multiple studies saying it improves pregnancy outcomes and reduces miscarriage risk for both women with pcos and diabetes.

I’m just very on the fence, I can’t find anything online linking SGA and metformin in pregnancy and I am scared of having another mc (I have had 2 losses) if I change any of my medication.

Does anyone know anything about this or has maybe been told this as well?

I’m pretty much decided I will keep taking it until my 12 week scan, and if baby is ok I’ll decide from there whether to stop or not.

Thank you xxx

I’m not much help because I’m only 4ish weeks so I haven’t had a booking appointment yet but I’m on metformin too so following with interest.

I spoke to my endocrinologist at length before getting pregnant and she never mentioned coming off it. It has done wonders for regulating my cycle and making me ovulate.

I know that’s not very helpful.

Hey! Yeah I realise this is quite a niche thread so I wonder if I will get many replies.

I thought it was very strange to be told to come off it because of some study that I can’t find anywhere. In fact, all the studies I read are positive about metformin in pregnancy and pcos, including this one which even mentions that it’s beneficial for baby’s growth:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3493830/

My gut is telling me to stay on it, and she did say it’s up to me, but I do feel weird about going against her advice. But I just feel like after doing my own extensive research it would be wrong for me to come off it.

I will update here if I get any further info. Xxx

Hi,

I was on metformin and Clomid for ovulation.
After I got pregnant, I continued with the metformin but the doctor said I should stop as it links to low iron levels.
I was scared to stop, so I gradually did until I reached about 15 weeks.
I DO have low iron levels now actually.

I would suggest slowly coming off them, take your time, because for me, it was my comfort blanket.

Currently 35 weeks.
All the best!!

Shouldn’t it be a doctor who advises on medication, rather than a midwife? Unless there’s already a policy in the trust blight be worth asking to speak to a doctor about it.

@reimah thank you! I’m already taking iron supplements and have never heard of it causing low iron before... isn’t it strange how many different opinions doctors have in different areas!

It really worked for me in terms of regulating my cycles which makes me think I probably do have some insulin resistance, so I feel very worried about coming off it. Xx

Hi, I'm 17 weeks and have continued it throughout. I had IVF treatment to get here and my IVF consultant told me to continue with Metformin as it can lower the risk of GD, at my booking appointment the midwife said she'd have to speak to a consultant about whether they'd recommend stopping or not, but I wasn't told to stop, and so have continued

@Totallydefeated yeah I would agree. Apparently they all got an email sent round saying ‘if a woman is on metformin with pcos advise them to stop taking it as it has been linked to SGA’.

I did get referred to a fertility specialist back when we were trying, but now I’m pregnant I’m off her books so to speak. But I wonder if I could email her and ask her opinion.

The thing is gps don’t seem to understand anything about pcos (I’ve learnt from past experience) so I don’t think I would go down that route. But would be good to get the specialists opinion.

Previously both her, another fertility specialist I saw privately and an endocrinologist all told me to stay on it throughout pregnancy.

Thank you xx

Hi all, im 23 weeks and was on metformin for two years before using letrozole to conceive. At my booking appt, the midwife booked me an appt with the obstetic consultant. The obs consultant wanted me to come off metformin. I then arranged a telephone appt with my endocrine consultant and he agreed that as metformin had done the job in getting me pregnant there was no harm in coming off. The main concern from the obstetrician was that the metformin could hide any potential GD because it would artificially lower blood sugar levels. She wanted me to wait until the glucose test is done at 28 weeks to decide next steps.

@ivfjourney5 thank you it’s good to hear your story. I really don’t get why it would be a good thing to stop when it seems to be working for me. Obviously I’m not a medical professional but I do think that I’m the one who knows my body best - and in the age of google I can find studies and evidence myself and weigh up the pros and cons.

Last time I was pregnant in October the midwife was like why are you taking that? And was like ‘well you’re pregnant now so you don’t need it anymore’ and I said I’ve read studies that says it helps women with pcos throughout to reduce mcs etc and she said ok carry on then.

It’s a strange one!! Xx

@MoscowMuse thank you for sharing your story I appreciate it.

The thing is though - if metformin is masking potential GD that means it’s doing it’s job, and it is a medication for GD, so I don’t understand why they would advise to stop for this reason.

The midwife did say to me that when I have the GD test at 28 weeks I would need to come off metformin 2 weeks before as it could make it look like I don’t have GD. But surely if it comes back negative that means the metformin is working...

It’s just so weird! I feel very nervous about coming off, and then having another mc 😞 I’m not even 12 weeks yet so I’m not even sure if everything is ok in there but I’m not bleeding yet so that’s good. I think I will at least wait until 12 weeks and then decide. I might even go to the endocrinologist again to see his opinion.

Thank you xxx

@Cafeaulait27 It's really tricky and there's so much conflicting guidance out there, i felt like i was driving myself mad on dr google. We had also had a 6week scan at the ACU during our fertility treatment and paid for a private 9 week scan as i was extremely anxious about mc, so we had some reassurance. My husband and i felt that after talking to the different consultants we would follow their lead, but appreciate that everyone is different. I think your plan to discuss again with the consultant sounds sensible. Good luck!

When I had DD1 (2019) I was told to come off them by GP, so I did, I was around 5weeks I think. I ended up with gestational diabetes and was told by my consultant that I should never have stopped them so I then ended up back on them at 28 weeks and on insulin. I ended up having a 8lb 10oz baby at 38 weeks haha so not small

Thank you @MoscowMuse yes it is really difficult to decide!

I just emailed the private endocrinologist who originally put me on metformin a few years ago, as he is up to speed with my miscarriages. He said for women who have had miscarriages they should stay on metformin at least until 12 weeks and only come off for the GD test at 28 weeks. So I think I’ll do that (if I hopefully get that far 🤞)

@GAW19 that is interesting, thank you for sharing! It’s so odd I think to be told to come off something which is helping and as far as I can see, doesn’t have any risks.

I will keep you all updated... as I said I’m only 9 weeks now so just hoping to get through the 12 week scan stage at this point xxx

I’ve also just noticed alongside many articles and studies online, that it is noted as reducing miscarriage risk in women with pcos on the nhs website:

www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/treatment/

I have also just heard back from my nhs fertility specialist and gynaecologist this morning, they both said to continue to metformin. So I think that’s my decision made as they know much more about my history and circumstances xx