Hypothyroidism care when pregnant?

[BloominMoomin89]

Hello all,

Just wondering what care everyone has got/is getting with their hypothyroidism whilst pregnant.

With my 4 year old, i saw a consultant at 13 weeks but thats it. GPs all pretty clueless and midwives kept saying GPs were in charge. Consultant suggested i should have had monthly blood tests before seeing him and then an extra growth scan which never materialised. He's 4 and well so no issue then.

GP seems more concerned in Kent and midwife more clueless than before about blood test monitoring.

Forgot to say, im 8 weeks 2 days todsy with my second child (mmc in November 2017)

I've just had my first baby, had hashimotos since age 16. I didn't see a consultant during my pregnancy or have any extra scans. I had my tsh levels checked every 6 weeks and I think the results were run past a consultant (though I knew what they should be anyway) and my dose increased accordingly. It was all done through the midwives though. Could've been managed by my GP but I asked for the bloods to be done with the other pregnancy bloods to avoid separate trips to the GP. I think as long as TSH is managed well there's no need for anything else.

Sorry meant to say that the bloods/checking was all instigated by me as i knew more than the midwives about it all. You may need to be proactive about it as it's essential to be on the right dose, esp in the first trimester.

I have an underactive thyroid. All pregnant women in this area with this condition are referred to a consultant. There's a 9 months waiting list!! I was still on the consultant's list after a previous miscarriage so I got to see the consultant. I was a bit of a novelty for him!

I do not have a thyroid. Currently 34 weeks pregnant with 2nd. With both pregnancies thyroxine was increased by 25-30% from the beginning (as per NICE guidelines). TSH/T4 was monitored every 4 weeks. Consultant lead care. Extra growth scans at 28/32/36weeks.

Found this time around harder than the first, had to put my foot down a couple of times to make sure I get the checks that are needed. Don't be afraid to ask for the same.

Hi,

The British thyroid foundation are currently working on new guidelines for this for patients (and gps if they care to listen) but the nice guidelines are very clear. I reviewed them for them as a 'patient sounding board.' They've worked with an endo and a gp who has an interest in the area.

Ideally you should have had a test before conception to check tsh below 2.5 (though I imagine you're nearer 1 or below to feel well?)

A test as soon as pregnant (4-6 weeks) and unless really suppressed, then up by 25 mcg. The guidance the BTF have written then say to get a test every 4-6 weeks throughout pregnancy; in my experience it's between 8-14 weeks that you tend to need the largest extra amount. Nice don't say to test as often as this. I must say I just ask the gp if I can check and they're happy to do so.

Everyone seems to be different; I seem to need a lot more (125 slowly up to 200 then dropped to 175 - I'm going to check again soon in case that's too much). Someone else I know only needed an extra 25 and their tsh was 0.3 throughly pregnancy. I've also done the alternate day thing before to fine tune it. (150/175 every other day).

NICE state that as soon as pregnant, refer to an endo but in practice I have found the gp phones the obstetrics dept at the hospital to follow advice - ask them to do this.

You will see an consultant at 12-14 weeks and yes they're right the gp should be managing it in the first trimester.

I'm extremely happy to send you the info I have from the BTF (not yet published on their website) - another idea is to search for your local nhs trust's guidance on thyroid care and brandish that.

I would get a test ASAP then up by 25 while you wait for the results. Or just up by 25 now and get a test in a week or so, when you could need more.

I had a nightmare in my first pregnancy as the brand I was on was faulty; at 12 weeks tsh was 13 - he was fine but I did have a small placenta and he had low birth weight.

Please Make sure you're taking a pregnancy vitamin with iodine in, and eating dairy and white fish.

Baby starts to make their own thyroxine towards the end of the first trimester, slowing relying on their own towards the end of the second.

Please pm me an email address if you'd like the BTF info. I'll post some useful links here too.

The loop holes are fucking ridiculous. The BTF have repeatedly asked to be represented at the royal college of midwives conferences and have been declined. Some gps are clueless despite several articles in their pulse magazine in recent years.

^ Emz01 has had bang on care.

It does vary between women hence frequent tests.

The pregnancy section of this is very clear; the consultant has worked with the BTF.

www.northoftyneapc.nhs.uk/wp-content/uploads/sites/6/2012/03/Thyroid-guidelines-North-of-Tyne-Area-Sept2016.pdf

Nice guidelines preconception or pregnant:

cks.nice.org.uk/hypothyroidism#!scenario:3

BTF Info, due to be updated.

http://www.btf-thyroid.org/projects/pregnancy/202-thyroid-in-pregnancy-information

I'm throwing all this out there for anyone else as still I know of pregnant women who are not getting the appropriate care in the first trimester and it boils my pregnant piss.

Thanks @Ekphrasis - sounds like I really didn't get the right care in that case. But my baby boy was born last week, a v healthy 8lb 12, so was lucky I guess. Will push for proper treatment if I have another!

I felt I had very thorough care. Was referred to a consultant immediately and my medication was doubled. Regular check-ups (at least 4 throughout the pregnancy) and was given an extra scan.

So tsh was 0.08 on 125mcg at 4 weeks so they asked i do 100/125 alt days. At 7 weeks its 0.6 . t4 is mid range now was just over top end at 4 weeks.

Im having another midwife appointment in 2 weeks, should i get it checked again then? So another 3 weeks. My gps are so hard to get hold of they'll book me an appointment to discuss a blood test which is a 1 month wait on top.

You sound perfect at the moment. I think a test then would be very useful as you've dropped your thyroxine slightly.

It's possible you have some residual thyroid function left which may be kicking in so it's wise to check what's going on either way.

I was pretty in the ball hounded them for tests as tsh was very low pre pregnancy and at 4 wks. I only went up by 12.5 then but by about 9 weeks (I think!) it had crept to 3.5 so I could have managed the extra 25.

harriet it sounds like you were on the ball and all was well. My issue is that unless a mother is informed, (Which a mw or gp may not do) she may not get the appropriate treatment till the 12 wk scan.

When ttc my first pregnancy I didn't have a clue until I happened to hear it on radio 4 (inside health) but the gp was clueless. I had to badger them to check the nice guidelines. Then they were great.

4 women I know in real life have had issues being treated properly in the last 6 years. A friend with no thyroid had her thyroxine raised the first time but said "they haven't done that this time" (second time round) - she was too trusting of the care and by 12 weeks was actually very unwell. Baby was ok in the end but she had to take a few weeks off while she got over the hypo symptoms, and it can be a cause of mc, hence a woman must be below 2.5 if ttc (they do test for this at Repeat miscarriage clinics).

I have found out I am pregnant in the last couple of days. One thing I am most worried about is my hasimotos. I only had a blood test in March and my dose was upped by 25 so don't know if they are likely to increase again. I will try to push for another test if recommended but it's so hard to get basic treatment in the first place!

Also, I have started taking pregnacare max and know they have iodine in. I was under the impression this might be bad when hypothyroid @Ekphrasis can you help with this?

My gps are so hard to get hold of they'll book me an appointment to discuss a blood test which is a 1 month wait on top.

I was able to ask gps to sign off a repeat blood test when they received the results each time; you can speak to the receptionist and highlight you're pregnant and this needs urgent care so that a gp could sanction a blood test without seeing you, or give you an urgent ring back. If MW will / can do bloods at that appt I'd try to do that but perhaps ring to check.

Did they say when they'd next test you? - it's possible there's a note on your notes - I tend to just book the blood test as the note is always there during pregnancy?

There seems to be some barriers for some women due to simply how the gps practices operate. I must say I'm my area we are very lucky and rarely have to wait long or can get a phone call if urgent.

You're currently at a great level and I'm sure it won't go hugely out of range so don't worry too much; just good to keep on top of it.

Congratulations loop!

How much thyroxine are you now on? What was tsh at last test?

According to nice guidelines you should get a test between 4-6 weeks so try to see a gp and get that done ASAP. Print off nice guidelines just in case; ask them to phone an endo or the obstetrics dept it they seem unsure. Ideally you'd raise by 25 after the blood test, but it depends how much thyroxine you're on.

Normal healthy people need iodine (and selenium and iron actually) to help the thyroid make thyroxine. When you're on thyroxine you don't actually need it as much but don't worry as it's fine to take the amount in pregnacare. Too much iodine is bad for anyone (via herbal pills) however the amount in pregnacare is correct for pregnancy - and is really important for foetal brain and thyroid development.

There's a bit of an issue with the new trend for vegan diets as the U.K. doesn't supplement anything with iodine as they've always relied on it coming from our dairy industry (and white fish). They do supplement in the us and other parts of the world. This is all fine if a vegan who is not on thyroxine takes a good vitamin but not great if they don't and really not great if they're vegan during pregnancy without a supplement.

Cretinism became condition of the past when the dairy industry started using iodine and areas of the world which were iodine deficient had it added to things. Seaweed isn't a great source as you can absorb a lot of heavy metals and potentially take too much.

(Sorry I'm a big one for evidence; recent radio programme on iodine by one of the uk's top iodine nutritional experts):

www.bbc.co.uk/programmes/b09plrg0

Good link for iodine info:

www.btf-thyroid.org/projects/iodine/206-iodine-campaign-background

Thanks @Ekphrasis that's really helpful. I've only ever been on a low dose and was recently put up to 75 when my TSH was 3.5. I had it tested again since the increase but the results only came in a couple of weeks ago and they just said "no action needed" on the phone. I'd been meaning to go in and get a copy of the results but have now found out I'm pregnant. I'll make an appointment for this week and ask them then.

Sounds ok but yes ask for the results and get another test before you're 6 weeks. If they seem unsure ask them to contact an endo or the obstetricians with endocrine responsibility at the hospital for advice; you don't need a referral.

Second link on iodine; FAQ. I panicked a bit about the last paragraph and checked with the BTF (who I think checked with Margaret Rayman) and said it was fine.

www.btf-thyroid.org/projects/iodine/249-iodine-faq

*"I’ve had hypothyroidism for 5 years and want to take some multivitamins. Can I take one that includes iodine?

It may be difficult to find a multivitamin preparation without iodine but if it does contain iodine that won’t matter – your thyroid won’t be affected.*"

Yep all ok.

www.ukiodine.org/FAQs/

Really, it's more important if you're not on thyroxine to take the right amount of iodine during pregnancy.

Thanks for all of that info @Ekphrasis I will certainly make sure I'm on top of it! I had to fight so hard for the diagnosis in the first place so will certainly be doing the same in pregnancy!

Definitely. YADNBU!

You'd be someone who I think would need regular monitoring as you don't know what your thyroid is doing or how it will react during pregnancy. It's possible you will end up on more post pregnancy than you're on now; it might be ok. Please ask about checking thyroid antibodies too, iirc there can sometimes be a need if it's a particular type of auto immune thyroid antibody but I can't remember the ins and outs of that. Gp may need to look it up/ call the hospital.

Antibody thing isn't in nice guidelines; it was when I was first pregnant but might have changed. Just worth checking.

Thanks @Ekphrasis I have had a couple of private blood tests to check antibodies in my battle to get treatment. They have come down since first diagnosis but are still there. I will certainly discuss it.

Depends on your trust guidelines I had an extra growth scan last pregnancy but since antibodies are neg and previous good sized babies have been told I don’t need it this time unless midwife has concerns
Yes some GPs are not 100% about the guidelines but a lot are it’s a bit harsh to say all are clueless