Underactive thyroid- pregnant

[katpw]

Hello, underactive thyroid help please.. advice online says Levothyroxine should be increased by 30% as soon as you get a positive pregnancy test. I called my doctor and they haven’t increased it…

I’m UK based. Anyone with hypothyroidism, did yours get increased straight away? Before your first midwife appointment at 8-10 weeks?

Really worrying!

Thanks so much ❤️

Hi I increased mine myself for both pregnancies by 25mcg. Both times I needed to increase anyway. Not advising you do that but having this condition means I have to be my own advocate and do my own research as doctors don’t seem to specialise in thyroid conditions and go by TSH only. My endocrinologist both pregnancies was a specialist in diabetes and didn’t seem to know much. She wanted me to lower my dose the other day because my TSH was suppressed when I questioned her that my ft4 was barely within range she was squirming so I ignored her. I did have a fantastic gp who knew his stuff but once he referred me to endo he couldn’t get involved with my care. I also get my bloods done by medichecks and get full panel inc ft3 as nhs comes back with TSH only most of the time which tells you nothing esp as my TSH fluctuates randomly and isn’t consistent with my ft4 and ft3 levels. Read articles by Mary shomon and hypothyroid mom if you want to know more.

Hi @Lovelycheesegromit thanks so much for your reply. What confuses me most is I’ve had a full function test on the nhs recently hit because the first result (TSH) comes back as normal, they don’t get told what the other results are.. which makes no sense in my head as from the reading I’ve done online, the TSH alone isn’t an indicator of how well your thyroid is functioning.

I’ll order a medichecks test and will insist on speaking to another gp about increasing my Levothyroxine by 25mcg (which is approx 30% increase which online suggests).

Is there anything else you’d recommend I do? I’m 5 weeks pregnant.

Thank you again, really appreciated.

My gp upped my levo by 25mcg at 6 weeks, I could feel my uat symptoms starting up again and demanded a blood test. I second the medichecks test if your gp isn't on board and advocate for yourself - NHS care for this condition is abysmal :(

Have your symptoms started up again? Dry skin, brittle nails, constipation and crippling fatigue on top of early pregnancy symptoms - it can be overwhelming. Hope you get it sorted x

This is disgraceful.

The BTF have been trying for years to raise awareness of this.

You'll need more than on test and absolutely should be paying for this.

Use this info, show Gp NICE guidance which was updated via the btf

www.btf-thyroid.org/pregnancy-and-thyroid-disorders-alert-card

If you're over 5 weeks I'd up now as it takes a few weeks tokick in. I generally went up by an extra 75 by the time I was 20 weeks, but reliant on tests

Sorry I'm out at the mo.

I would also call the BTF and discuss.

Your baby will be fine though I'll post reassuring story later!

Your dosage should be increased as soon as you get a positive pregnancy test, then thyroid tested every 4-6 weeks after that. How much it increases by depends on your current dosage but ideally your TSH should be under 2.5 for the first trimester and under 3 after that. The British thyroid association is a really good source of info - www.btf-thyroid.org/pregnancy-and-thyroid-disorders-guidance-for-patients

Good luck - the lack of knowledge GPs have about this issue I’d staggering!

Honestly this is my second pregnancy with this condition and I don’t have the patience for the NHS. First of all normal Means nothing, get a print out of your results but you’re right if TSH is ‘normal’ the others don’t come back. So it’s a waste of time. This is what’s been happening to me and the endo had the cheek to tell me to lower by dose based on limited results. You can fight and argue but in the end it’s your baby and you don’t have time to mess about and you just have to get on with it. So I nod politely to save the headache and do what I need to. I would just get re tested in a couple of weeks time (I think some say it’s 4 weeks) to get levels to stabilise. 25mcg isn’t a huge increase to make you go hyper, but it’s a cushion in the meantime incase in turns out your levels do need increasing but yes if you want to your GP’s permission then show them your full results. They’ve changed nice guidance and have made it vague compared to how it was a few years ago so gp will be even less aware of the auto increase without bloods. Just take your other prenatals and keep your thyroid in order. Folate, iron and b12 helps the thyroid too so if they’re low your thyroid won’t be great but prenatals have those.

@Lovelycheesegromit my TSH IS 0.04 and doc wants me to reduce my dose even thought my ft4 is only just in range. Glad I know what to look for myself!

You definitely need to push this as mine was overlooked even though my TSH was way over the recommended 2.5. GPs seem to really lack knowledge in this area.

Call and ask what your TSH was on your most recent test and request another blood test ASAP.

Argh mine was 0.02 Or something and like you, ft4 just in range and that tells me my ft3 is probably more towards the lower normal but of course without that data can’t really say but it’s funny how they’re so confident in telling us to lower the dose without knowing the whole picture!

I didn't even know it was supposed to increase! Im underactive, dose was not increased, had a very easy pregnancy and no excessive weight gain. Probably not the same as everyone but try not to worry, it didn't hurt me

Hi @Kindofcrunchy no I haven’t noticed a flare up of my symptoms- so frustrating not knowing what to do! Whether to increase by 25mcg without doctor suggesting so or wait to see what they say at a later date.. my TSH came back as 1.39 most recently

Thank you @WarriorN ! I currently take 75mcg daily - you’d suggest increasing to 100? My TSH came back as 1.39 most recently

Thanks also for this suggestion @WarriorN . Will give them a call. It’s my first pregnancy and it’s petrifying how little the gp seems to know or care

Thank you @Whataboutye88 . I was very shocked when I called to tell them re my positive pregnancy test and that I have hypothyroidism and no mention of increasing dose. I called the midwife team too and they insisted I’d just need a blood test at the initial appointment at 8-10 weeks.

GPs know jack about thyroid and pregnancy usually

I went by TSH level. I had tests every two weeks whilst pregnant. You need more until the baby starts making its own thyroxine at around 20 weeks. Then watch out for post partum thyroiditis. Doesn't last long.I over medicated. I have Hashimoto's though and I need to stay at the bottom of the "normal" range for TSH.

Mary Shomon is the best patient advocate for pregnant women with thyroid issues. Look her up.

Congratulations on your pregnancy. I was referred to an encronologyst after my booking in appointment who advised I have my thyroid tested in each trimester. So far, I havnt had to increase my levothyroxine dose.

1.39 is nice and low, so defo no need to panic. But the baby will put a strain on your thyroid in the first trimester in particular so you do need regular blood tests.

Thank you @Merryclaire . The latest 1.39 test was stupidly taken in the afternoon after taking Levothyroxine in the morning (it was the only appointment they had for ages) so now worrying my level could be over 2?! Any idea how much that could affect it?

Thank you @Babyenroute ! Do you know your latest TSH level?

Thanks @ehb102 . Did you get the bi weekly tests on the NHS? Did you have to insist? I’d love tests that often but didn’t know it would be possible? Was your TSH really high before?

Thanks @Sixsmith that’s reassuring - finding it all very scary!

Thanks so much @Lovelycheesegromit . I’ll try calling my gp again tomorrow to discuss as I’d hate to increase it myself and then it backfires and I’m taking too much 😫🥲 my latest 1.39 result last week I stupidly had the bloods taken in the afternoon of taking my Levothyroxine in the morning.. do you know how much this is likely to affect the accuracy of the result?? This is all very scary !