Thyroid meds pregnancy

[T2024]

Hi all, I'm around 5ish weeks pregnant, I'm on 25mg thyroxine pre pregnancy for subclinical hypothyroidism.

Had to go to a private consultant to be prescribed the thyroxine (recurrent miscarriages as a result of tsh level).

Long story short, the GP won't increase my dosage until I have a high tsh blood test but I've read online that it needs increased at positive preg test.

I've been upping my own dose slightly and haven't had results from the blood test yet. How do I convince the doctors to up my dose to help my body cope with extra pressure of preg on my thyroid?

Or I do I need to go back to the consultant to get him to adjust dose? Also, I'm worried the doctors may think my tsh level is fine in blood tests but obviously won't know I'm taking a slight increase of my own accord.

Thanks!

I’m on levothyroxine for hypothyroidism. I really wouldn’t increase the dose unless TSH indicates that it is necessary. I’m currently 18weeks pregnant, I check my bloods every 4 weeks to ensure that I’m on the correct dose. So far, no increase was necessary for me as I’m still in the optimal range.

@Cinai thanks so much for your reply, if you don't mind me asking, what dosage are you on in pregnancy?

I'm just worried as I'm on such a low dose, and it take that long to rectify with thyroxine that another miscarriage could be caused. Having had 3 due to this is probably why I'm so anxious about it.

If you have subclinical hypothyroid, then a 25mcg is probably adequate to rectify it. Taking too much is just as dangerous so please don't up your dose without a blood test!

I have hypothyroid and take 175mcg thyroxine everyday and during pregnancy I have to take less, not more!

I was under a consultant and they monitored my blood tests and increased my dosage right at the beginning. I believe I was
On 100mg and went to the clinic every month. The GP didn't see me so maybe ring the consultant and have a chat to their office?

I was on 75. I was also quite concerned about whether/when to raise my dose when I got pregnant and I’m checking my blood religiously. My TSH is currently between 1.2 - 1.4, which is supposed to be a really good level for pregnancy. It’s not a given that your body requires more in pregnancy, the only way to find out is by monitoring your levels. A too high dose will be as harmful as a too low dose. Can you do a private blood test - the one I use does results in 24h - to ease your mind?

@Cinai Thanks, yes good to know, hopefully the blood test I done last week will come back and confirm that tsh is OK atm. First trimester is so worrying!

@jollyhollyday I'll maybe give the consultant office a ring next week, as they may be able to give me some advice via phone (no apps available unfortunately).

@BananaHammock23 thanks so much, that's interesting, I would have thought you'd need more due to pregnancy pressure! I've noticed after my previous miscarriages, my tsh has shot upto 7/8 by the time I lost them, at week 5ish. Although I wasn't on any thyroid meditation then which is the difference, hopefully it'll work out OK on blood test.

Also @Cinai where is it does 24hr blood tests? That could be handy in between gp blood tests.

I know, it’s really worrying! I arranged my private blood test on the same day I found out I was pregnant, as I was also concerned about the correlation between hypothyroidism and miscarriage. Hopefully you’ll get your blood results soon! You might also ask if you can be referred to an endocrinologist to discuss how to manage your thyroid during pregnancy, and to arrange regular checks. I think whether or not you get to see one and when depends on your NHS trust. (Mine is useless, they refused to even talk about my thyroid or check my bloods until last week when I already was 18 weeks, so I had to do it all privately). I use a company called DocTap for my private blood tests, but you could google who is in your area.

Hi, I had also read on some trust websites that thyroxine should be upped straight away and was quite anxious about this at the beginning as my bloods weren't checked until about 9 weeks I think. I have been on 100mg for around 12 years (stable). I was booked in with the endocrinology team and have had two lots of appointments/blood tests and levels have stayed the same so was discharged at 30 weeks with advice to have bloods checked 6 weeks after baby arrives.

Not everyone is the same of course but this has been my experience 😊

@Carrot678 that's so helpful, thank you. So your tsh level didn't rise at all during the pregnancy?

Maybe if I was stable tsh wise before on 25mg, I shouldn't need to increase my thyroxine during preg unless blood tests show otherwise. I had always thought you had to be ahead of a tsh level change in pregnancy but maybe it differs with people.

@T2024 currently 32 weeks, no changes and no plan to check again apparently!

As long as you have had an initial test that is the main thing at the moment. Just keep on at them if you are not sure about anything or feel more needs doing!

If you can afford to do it then do it privately because my GP p*ssed about and didn’t know what she was talking about and sadly I MC at 8 weeks and when I had my levels checked, it was way above what it should have been. I went to her to have my dosage upped when I got my BFP (I was only on 25mg) and she told me to come off it!! Clueless! GPs are nothing but dangerous when it comes to TSH levels in pregnancy and I urge you to be seen by someone who knows what they're talking about ASAP. X

@Jellybelly888 I'm so sorry to hear you lost your little one, that's awful they took you off it. Absolutely shocking.

I'm waiting on test results, have upped a few days doses though and hopefully once I know the level I'll get in touch with my consultant. x

@T2024 Hey my thyroid was a concern when I fell pregnant as I miscarried a few years ago as it wasn't checked so I was also so worried when I found out I was pregnant this time . My bloods were done as soon as I found out and mine went from 2.5 to 5 within a week my original dose was 75mg so doctors wanted to increase by 25mg but I wasn't happy with that so she increased to 50 so I'm on 125mg I'm now 30 weeks pregnant and have bloods checked regularly and they've always kept me on the same . I think they like you to be 1 or under , but I totally understand how you're feeling as the thyroid gland is a massive part in baby development the first trimester

I didn’t increase until blood test showed I needed to.

Will do @Carrot678, thanks so much, I'm sure they think I'm being neurotic asking for early tests but this pregnancy has progressed so well hcg wise which is so different to the last few. X

For those increasing without medical guidance - having too high levels can also be as damaging as too low.

TSH should be below 2.5 in 1st trimester according to this
https://www.btf-thyroid.org/thyroid-disorders-in-pregnancy#:~:text=If%20you%20are%20planning%20a,3.0mU%2Fl%20after%20that.

@nice2 my gp said the baby is so tiny it won't put any pressure at all on my thyroid till 9 weeks pregnant 🤦‍♀️ It's shocking how much we have to advocate for ourselves.

Like yourself, I know my tsh changes quickly - I've started upping my dosage slightly on some days. I'm sure it wouldn't go lower as its always went high in pregnancy before thyroxine treatment.

@DustyLee123 which week did you get tested in your first trimester? How much did the level rise?

@T2024 gosh I miscarried in 2018 at 7 weeks pregnant I called the doctors as soon as I found out about my thyroid I was told no they don't need to check that so I took there advice and I miscarried now when I fell pregnant this time I wasn't going to have that and as soon as I found out I actually found out 6 days before my period so when I called the doctors this time she said yes we advise to check thyroid and I explained what happened in 2018 to which she said yes the rules have changed now ☹️ just awful people having miscarriages unnecessary for a simple blood test ... so I was literally 4 weeks pregnant and mine shot up but I think the medication is easily adjusted think that's why some say by 25 as it's such a slight dose and if you've miscarried before because of it then I can understand why you're so worried

I think it’s just so bad that GPs just don’t know about the issues surrounding thyroids and miscarriages. It’s one thing to not know and seek further advice, but it’s another thing to give wrong advice and end up putting the baby and mother at risk of miscarriage! I’m going to be writing to my GP to tell her of the EPAU findings with my MC and advise her to reconsider seeking further advice from an expert before dishing out incorrect advice surrounding thyroid levels and medication during early pregnancy.

I am just joining to commiserate. I ask so sick of having to advocate for myself for this fucking disorder.

My tsh is 4.8 and i got referred to a specialist to work out what my new dose should be. Got told in really dismissive voice its normal and no big deal. Like what the actual fuck. I'm lucky my pregnancy has got this far and this healthy in spite of how clueless so called specialists are about thyroid and miscarriage.

@Kofifi, congratulations on your pregnancy. I know, it's shocking how bad the process is of getting treatment.

How many weeks are you? What dosage are you currently on?

Im 18 weeks and on 50mg. I eventually got them to agree to increase to 100 but had to really argue for it.

My understanding is the most risky time is 1st trimester so not feeling too worried. Just fustrated.