Terrified about taking PTU in pregnancy

[TheGreatProcrastinator]

I’m really hoping to get some reassurance from mums who’ve been in a similar situation to me. I’m 5 weeks pregnant; I’ve just been diagnosed with hyperthyroidism and prescribed 300mg a day Propylthiouracil (PTU) to treat it. I know there is some evidence that PTU can cause birth defects and I’m terrified that I’m going to harm my baby by taking it.

DH and I haven’t told anyone I’m pregnant yet, so I cant talk about my situation to my family or friends, which is making me feel really alone. If any mums have been on PTU in pregnancy and gone on to have a healthy baby, I’d really love to hear from you!

Hi,

I haven't been on PTU but I have been hyperthyroid. My old consultant said it wouldn't be the end of the world if I got pregnant (we had wanted to try but got diagnosed so have only just had our baby 4 years later!) and I'm sure he wouldn't have said that if he thought PTU was really dangerous. He was a well respected consultant and said he had had a few patients get pregnant during treatment and swap to PTU. How are you feeling? I do empathise - I have never felt so ill. Anyway - all's well that ends well and I'm sure it will be for you too and your baby will be fine. Let me know if you need any general advice as I know I found it all rather lonely at times as it's not something anyone else I knew had experience of.

Thanks so much for replying @Leafy2018. And congratulations on your baby! I’ve not felt too many hyperthyroid symptoms at the moment - my thyroid is just inflamed and sore, but stressing about all this isn’t helping! Just hearing that your consultant has put other pregnant women on PTU, and considers it a safe treatment, is reassuring though.

I’d never heard of hyperthyroidism until I was diagnosed with it. It doesn’t seem to run in my family, so it’s all just a lot to try and take in at the moment.

I took PTU during pregnancy for an overactive thyroid (300mg daily). I switched to Carbimazole for the second trimester as advised strongly by my endocrinologist and obstetrician.

I had a thyroid storm at the end of 2017 and spent a month in a coma in critical care and on life support, so I STRONGLY advise you take prescribed medss for your thyroid whilst pregnant as you certainly don't want a thyroid storm which WILL harm your baby!

Best wishes and good luck x

Thanks @Squiff70. Really sorry to hear that you went through such serious complications. I know the consultant knows a lot more about the relative risks than I do, so I’ll definitely carry on taking the medication. It just scares me to use a serious drug like this when I’m trying to be so careful about everything else that I’m putting in my body while pregnant. I guess I’ve just got to try and tell myself that the benefits of taking it outweigh the risks.

Actually ptu is reccomend during pregnancy its carbimazole that causes birth defects I've taken ptu with all three of my pregnancies kids are fine

Thanks so much for sharing that @slipperywhensparticus. I can’t explain how much better it’s made me feel just to hear that you’ve had three healthy kids while taking PTU.

Also if you stop or decrease your dose you are risking losing your baby did they not explain this to you? Take the pills

They are bitter though so be warned I always switch back to carbimazole after I find it a nicer pill to take but ptu doesn't cross the placenta as much so it cant send baby underactive

I was diagnosed with graves after I had DD and took PTU whilst breastfeeding. As said above, its carbimazole that is not good for pregnancy/breastfeeding. I've been TTC dc2 for a year or so now and my thyroid is acting up again, I would have no qualms about going back on PTU as it is more dangerous to have an overactive thyroid whilst pregnant. When I was first diagnosed my consultant said to hold off TTC as it is so risky being pregnant with a very overactive thyroid - so please take the meds! When I was pregnant I was also prescribed blood pressure medication in the third trimester and there was no adverse affects on DD at all who was born perfectly healthy

I wish you well, you have my sympathy as thyroid issues are totally shit!

Thanks @slipperywhensparticus and @WitchitaMickey. My situation has all progressed really quickly, so I’ve not had a chance to talk any of this through with the consultant yet. I had bloods taken on Thursday and had a call from the consultant on Friday saying I was hyper and needed to start treatment that day. I don’t even know what my levels of thyroid hormone are.

I definitely wouldn’t consider stopping or reducing the medication without discussing it with the consultant first. I’ve got an appointment with the consultant this Thursday, so I can talk this all through with them.

It’s just all do new to me, so the unknowns are quite scary. I haven’t had any thyroid issues before so it just seems like the worst possible timing for this to happen while I’m pregnant for the first time.

@TheGreatProcrastinator its important that I tell you that I was NOT pregnant or TTC when I had the thyroid storm.

You should level off during pregnancy but not at the beginning mid to late term you should be on a lower dose you are at most risk before 13 weeks have regular checks take your meds and you should be fine I've stormed a couple of times never during pregnancy

And consultants wont tell everything to you as they wont want to worry you because stress makes it worse I told you because you should know the risks of not taking your meds

You should take your meds, an out of control thyroid can cause all sorts of issues including miscarriage. I have Graves, I took PTU with my DD reducing my amount, as per my consultant, as my thyroid improved during pregnancy. When I had my DS my thyroid was in a period of being level so I didn't need any meds but had my levels checked every few months throughout the pregnancy.

Also my consultant has known all along that I wanted a family, I was first diagnosed in 2011. It's never been a problem he's always just said let me know asap if you fall pregnant so we can switch to PTU. I had DD 5 years ago, and DS last year. I really like my consultant he's got a very dry sense of humour!

Thanks everyone. @furryleopard it’s really reassuring to hear that you’ve had two children while taking anti-thyroid meds. I’m feeling so much better about my situation now. x

I have graves disease .Im on low dose of carbimazole 5mg for 2 days and then skip 1 day and repeat . I want to get back to ttc . Should I worry?
I tried ptu a few years back but got palpatations and facial rash and swelling .
Should this low dose if carbimaxole be safe?

@TheGreatProcrastinator I know this is an old thread but how did you get on? I’m 14 weeks but have been taking PTU from before I was pregnant. I stupidly read some research articles today about birth defects and now I’m worrying myself silly.

Hi

I also found this treat but appreciate its old

How are you getting on?

I was diagnosed with over active thyroid and have been on Carbimazole but I was so poorly that we put off TTC when I was so ill
Now i feel better and my levels are normal I spoke to my consultant and he said it's safe to carry on TTC so I've been switched to
PTU just waiting for my prescription

I'm on my period right now so I'm armed with my vitamins, opk tests, and getting prepared for when we can TTC
I know it's going to be a long road for us
( difficultly in conceiving)

Good luck with ttc @strawberrysummer19. It actually only took me 4 months and we started ttc about a week before I was diagnosed so there was probably no way I was going to fall pregnant quickly. Once my levels were normal it was very quick. I’m 22 weeks now and everything is looking good. After a few ups and downs in the first trimester when I went under active (over medicated) to over active again, my tsh levels have been ‘normal’ for around 14 weeks. I have my bloods done every month to check and get extra growth scans in the third trimester but otherwise this pregnancy has been straightforward. I switched back to carbizamole at 16 weeks. Good luck and any questions feel free to pm me

@ACatCalledLola wow congratulations! That's lovely. And good to hear. I should get the PTU soon so I'm hoping I don't have any side affects as I've been reading and they don't sound very nice. I feel so well on Carbimazole.
I hope I fall soon. I was TTC for 17 months with my lo and we've been trying for ages now. So I've called my drs to see if we can get some help so fingers crossed we can h have some tests done

Thank you x