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Original poster

TTC and subclinical hypothyroidism

392 replies

Owl86 · 20/05/2021 18:19

Hi all

I'm 34, and my husband and I have been TTC our first baby since January. We've had no luck yet, but realise it's still quite early days.

However, I recently had a blood test after an ultrasound found a polycystic ovary. This came back negative for PCOS, but showed my thyroid function was out of whack. My TSH is 4.93, higher than the reference range, and my free T4 is on the lower (but normal) side at 14.7. So my GP told me I'm subclinically hypothyroid.

Not really knowing anything about thyroid issues, I asked what this meant for fertility and pregnancy. The GP said some fertility specialists like TSH to be under 2.5 when TTC, but it's more about optimising the body for conception than anything else. They didn't suggest medication right now, but said if I'm still not pregnant within the next 2-3 months they'd repeat the tests (with an extra check for thyroid antibodies/Hashimoto's disease) and refer me to the fertility clinic for advice if my TSH is still high. But if I do become pregnant, nothing further needs to be done.

I've since done my research and it doesn't seem to tally with what the GP said. As I understand it, for a healthy baby and pregnancy TSH levels should be below 2.5 and T4 ideally on the higher end of the normal range. And the NICE guidelines seem to suggest we should delay TTC
until I'm medicated and my levels have normalised and stabilised: cks.nice.org.uk/topics/hypothyroidism/management/preconception-or-pregnant/

I'm not sure how far I'll get with the GP, as they admitted they're not totally clued up on these matters. So I've ordered an advanced thyroid self-test kit to get a full picture of what's going on. I'm then thinking about seeing a specialist privately for advice on whether I should be taking thyroxine or not.

For anyone who's been through similar, my questions are:

  1. What sort of specialist would be best to see? An endocrinologist or fertility specialist/reproductive endocrinologist?
  1. Once on medication, how long did it take to get your thyroid hormones to the right level for TTC and pregnancy?
  1. Do you have any suggestions or advice? I'm feeling rather unsure and overwhelmed by the whole thing.

Thanks so much in advance. :)

OP posts:
Original poster
Owl86 · 23/08/2021 16:31

Hi @nellyinthegarden, feel free to join our little club!

I'm really sorry to hear about your two miscarriages, I can understand why you'd be suspicious about your thyroid being a factor.

I think the NICE guidelines used to give actual numbers, but you're right that the latest version (May 2021) doesn't.

However, you could try waving the following British Thyroid Foundation guidance in front of your GP: www.btf-thyroid.org/pregnancy-and-thyroid-disorders-guidance-for-patients

As you'll see, that clearly states: "If you are planning a pregnancy you should speak to your GP to arrange thyroid blood tests and ideally aim for a Thyroid Stimulating Hormone (TSH) level of less than 2.5mU/l at the time of conception. It is recommended that your TSH should be less than 2.5mU/l in the first trimester of pregnancy and less than 3.0mU/l after that."

12.5mcg sounds like a ridiculously low dose to me, given your TSH and FT4 levels. I'd try and push your GP to contact an endocrinologist for advice, as it seems many GPs just aren't clued up on how to handle women in our situation.

If you have no luck, and can consider going private, I'd be happy to recommend my endocrinologist who's very knowledgeable in this area. He can see patients via video call and he's doing a great job of sorting out my borderline underactive thyroid when I wasn't getting anywhere with the NHS.

Good luck with your GP this week, let us know how you get on. 🤞

OP posts:
nellyinthegarden · 23/08/2021 15:15

Hi all - I know you've been going on this thread for a while, but I've just found it and hope you don't mind me jumping in!

I was wondering if anybody can point me towards any official NHS / NICE guidance which says that TSH should be below 2.5 and FT4 around 16 for conception/pregnancy? I've been Googling and can't find anything with actual numbers, just references to a different scale for pregnancy.

For a bit of background, I've had two miscarriages so far this year (both at 6-7 weeks). Obviously I don't know for sure what caused them, but I've had a borderline underactive thyroid for at least 6 years so have my suspicions.

After the second miscarriage in July I paid for a private TFT with Thriva, which showed my TSH at 3.94 and FT4 at 11.6, both out of the ideal pregnancy ranges. The test also showed I have a high level of Thyroid antibodies (TgAb over 300). My GP agreed to start me on a teeny tiny dose of thyroxine (12.5mg), which I've been taking for a couple of weeks now.

I had some new blood tests this morning and have a follow up call with the GP later this week, and I'm worried they'll take me off the thyroxine if the numbers look a little better but not in the ideal pregnancy range, so want to be armed with all the evidence. We're actively TTC, and given I'm sure my TSH has increased with both previous pregnancies, I want to make sure I have some thyroxine available next time we get a bfp.

Sorry for a bit of a brain dump, just nice to talk about it to people who are going through something similar!

Good luck to all those TTC and congrats to those with recent bfps! Daffodil

Original poster
Owl86 · 23/08/2021 14:53

@FlyingGiraffe Sorry you're still recovering from Covid, sounds like it's knocked you for six. Thank you, I'm very happy with the progress so far. And yeah, approaches to levothyroxine seem to vary so much from doctor to doctor. Fingers crossed today's blood test shows your TSH is on its way down, let us know how you go with the results! 🤞

@Whataboutye88 How are things with you at the mo? Any progress with your endocrinology referral? Did you manage to speak to your GP about monitoring?

OP posts:
FlyingGiraffe · 23/08/2021 12:20

Hi @Owl86 Sorry I've been AWOL - I'm still feeling the effects of having covid but I'm getting there slowly. TTC has been put on hold whilst I get back to my normal self! I had a blood test this morning so that the thyroid specialist can review my levels after 25mcg for the last 5 weeks or so. It's interesting that we had similar levels but you were put on 50mcg! And it's brilliant that you seem to be responding so well to it! I'm so happy that your endocrinologist is getting things moving in the right direction for you!

@CTMcG I hope your scan went well xx

Original poster
Owl86 · 23/08/2021 11:09

@CTMcG Oh sorry, I thought the scan was yesterday! 🤦‍♀️ It's great you've spoken to the endocrinologist. Sounds like you're in good hands and they're keeping close tabs on you.

Bet it still feels so surreal! I'm 9 or 10 dpo today, period due Friday or Saturday. Not holding out much hope though x

OP posts:
CTMcG · 23/08/2021 10:54

@Owl86 thats brill!!

I have been in contact with an endocrinologist and she said shes happy with 75mg now and to get another blood test in a week or so.

Its not to this Sunday coming where i should be 6 weeks. Still hasnt sank in!! Xx

Original poster
Owl86 · 23/08/2021 09:40

Just heard back from the endocrinologist about last Monday's blood test results.

He says my new TSH of 1.89 is "excellent", but there's still scope to bring it down a little more within his target range of 0.5 - 2 (I think he's ideally aiming for around 1). So he's recommended I now take 100mcg on Mondays and Fridays, and stay on 50mcg the other 5 days of the week. He then wants me to get a repeat blood test in 4 weeks' time.

So we'll see what happens... Going to try and speak to my GP later today so I can run all this past them.

@CTMcG How was your 6 week scan yesterday? And @FlyingGiraffe, how are you doing with the levo so far? Hope you've recovered from Covid now.

OP posts:
Original poster
Owl86 · 18/08/2021 12:37

@CTMcG Thank you! 😊

Oh, that's great the endocrinologist has reviewed your case and upped your dose to 75mcg to be on the safe side. One less thing to worry about, as you say.

Good luck for your scan next weekend! x

OP posts:
CTMcG · 18/08/2021 11:57

@Owl86 thats fantastic news :) really happy for you!

Still hasn’t sunk in and wont until i get a scan i think! I have booked a private one for next sunday when i will be 6 weeks just for peace of mind!

My surgery out of the blue just rang me half an hour ago saying that they were in touch with an endocrinologist and reviewed my bloods and they said they arent worried about it being 3.85 but as i am in my first trimester, they are upping me to 75mg.

So glad they are taken it seriously, one last thing to worry about xx

Original poster
Owl86 · 18/08/2021 11:52

Hi all! Just checking in with a quick update.

I had another blood test on Monday, four weeks after starting 50mcg levothyroxine as prescribed by the endocrinologist I saw privately.

Just before starting levo, my levels were:

TSH: 4.38
FT4: 15

Four weeks later, my new levels are:

TSH: 1.89
FT4: 15.7

So I'm delighted my TSH is within my consultant's target range of 0.5 and 2 already! I really wasn't expecting the levo to work that quickly. I actually did a happy dance around the room when I found out! 😂

I've just sent the results to the consultant for him to review. I'm not sure whether he'll recommend a small dose increase to try and bring my TSH down a smidgeon more, or whether he'll think I should stick with the 50mcg for now. I'll report back when I hear from him.

How are you all getting on? @CTMcG Hope the pregnancy is going well so far - are you still in shock?! x

OP posts:
CTMcG · 11/08/2021 15:01

@Everythingcrossed2021 i BD'd alot less🙈

I only took folic acid as usual but started vit d tablets in the last week.

My last cycle, i took pregnacare and it messed up my cycle so i hadnt took that this cycle.

I honestly thought this was going to be a long journey so i didnt have the heart to stop actively ttc for a few months until i start new job and settle in so i didnt put any pressure on it like last month.

I started ttc in May and even though that seems like 3/4 months of trying, its technically only my 2nd cycle so i am so shocked! I have been on Levothyroxine about 10-11 weeks now - it could be what made the difference! 10 weeks ago my tsh level was 6.5 and now it is 3.85 so that could have been what helped!!

Everythingcrossed2021 · 11/08/2021 14:47

And did you do anything different at all this month?? I like to think that the meds have had an impact as that gives me hope! X

CTMcG · 11/08/2021 14:30

@Owl86 thank you! Still in shock!

To be honest, no! I had bad heartburn on Monday for an hour and the last 2 days i felt so hungry all the time but apart from that, nothing. Im not crampy, no sore boobs, no signs of implantation or bleeding, no nausea.

I am so so shocked and scared about tsh but the doc told me to not be worrying about that and to keep taking the 50mg but i will get it monitored once i am referred but for now, 50mg is enough x

Original poster
Owl86 · 11/08/2021 14:24

Oh my goodness, @CTMcG! 😀 That's amazing news, congratulations! 💕 Did you have any inkling at all or was it a total shock?! Wishing you all the very best, do let us know how you get on with everything!

@RoseA89 Thanks for sharing your story, and congratulations on your baby boy. It's reassuring to know things all worked out for you despite the hypothyroidism. Enjoy your little one. 😊

OP posts:
Everythingcrossed2021 · 11/08/2021 13:04

!!!!!!! @CTMcG this is amazing!!! Can’t imagine how happy you must be feeling! Great you got hold of the doc so quickly too RE meds! Wishing you all the best with the first trimester and beyond!

CTMcG · 11/08/2021 10:24

@Owl86 this happened this morning at 10dpo, i am in shock, genuinely cant believe it!!

called the doc there to advise on levo and she said results are back from tomorrow and its now at 3.85 but said to stay on 50mg and get checked again in 4 weeks but at this early stage, baby wont be effecting my tsh level yet so dont worry about it..

This girl has pcos and subclinical hypothyroidism, i am shocked!!❤️❤️

TTC and subclinical hypothyroidism
RoseA89 · 10/08/2021 17:47

Hi,

I just wanted to comment as I’ve just had a perfectly healthy baby boy despite taking thyroxine daily and having Hashimoto’s. I was lucky as I was diagnosed in my teens due to a family history so I’ve been on thyroxine for years. I fell pregnant unexpectedly and asked for a blood test to check TSH the day I found out as I knew it was higher than is recommended during pregnancy. My doctor said that the minute you find out you’re pregnant, the thyroxine should be increased by 50%. Then a blood test should be done often to ensure the levels are in the right range. I had to increase my dose more than once to get the right levels which made me really worry as it was well out from the recommended levels.
However, my son is perfectly happy and healthy. Try not to worry too much, although I know it’s easier said than done!

Good luck x

Original poster
Owl86 · 09/08/2021 19:28

@CTMcG Ooh, good luck for tomorrow! Fingers crossed and keep us posted. 🤞 x

OP posts:
CTMcG · 09/08/2021 18:51

Hi @Owl86 yes I am having my 2nd blood test since starting levo tomorrow so hopefully will have results on friday afternoon!

Im the same, i don't feel at all different on it and im roughly 10 weeks on it now but hopefully its closer to 2.5 or under🤞🏼🤞🏼 will keep you all updated xx

Original poster
Owl86 · 09/08/2021 18:30

Hi @Whataboutye88, I'm really pleased to hear your TSH is heading in the right direction! 😊 Has your GP just not referred you to endocrinology, or are you waiting for an appointment? Good idea to discuss the results and ongoing monitoring with them, I can understand why you'd be anxious about that.

Thanks for asking after me. My first monitoring blood test will be next Monday, just over 4 weeks after starting levothyroxine at 50mcg. So hopefully I'll know next week what my new levels are and whether I need a dose increase. I've noticed no obvious negative or positive effects since taking the levo, I feel the same as I always have apart from perhaps slightly less tired (which I may just be imagining).

How's everyone else getting on? @CTMcG Good luck for your imminent (I think?) blood test. And @FlyingGiraffe, I hope you're making a speedy recovery from Covid!

OP posts:
Whataboutye88 · 09/08/2021 15:57

Hi @Owl86, just checking to see how you’re doing now you’ve been taking your thyroxine for a while? Have you had your bloods retested yet?

I’ve made no further progress with my endocrinology referral, but did get my follow up blood test results after 6 weeks of taking thyroxine - my TSH is now 2.06 from 2.71 (and 5.71 after my last miscarriage) and T4 18.6. My TPO antibodies are still high though - 367 down from 399. I think we’ll start TTC
again from next month, but going to call the GP later this week to discuss my results because I’m anxious about getting the necessary monitoring in place before I get pregnant so my dosage can be adjusted if needs be. It’s a lot of info to absorb but so relieved the thyroxine is doing the trick. I really hope it is for you too.

DinosaurDiana · 01/08/2021 07:14

It read the whole post so sorry. I was subclinical and TTC, and the GP offered to start me on meds, so I did.
It took me exactly 12 months to get pregnant, and I was in my 30’s.
Good luck.

CTMcG · 01/08/2021 07:10

@Everythingcrossed2021 Still early but I am calling tomorrow morning to make the blood test apt so I will keep you updated❤️

Original poster
Owl86 · 31/07/2021 17:18

@FlyingGiraffe Oh no, really sorry to hear you caught blimmin' Covid! 😣 I hope you feel much better before too long.

Glad you're getting on OK with the levothyroxine though. I do actually think I'm less tired, but it's hard to tell if it's just a coincidence/my imagination. Need to give it a bit longer before making a judgement on that. I'm so impatient and nervous for my blood test already. 😂

Get well very soon! x

OP posts:
FlyingGiraffe · 31/07/2021 16:40

Hi @Owl86 great to hear you're doing well on the thyroxine and haven't had any side effects! I'm doing the same, trying to take it early to give as long as possible for absorption. I was hoping to start feeling less tired etc. as they say you can start to feel the difference after 2 weeks, however I caught covid last week and its absolutely floored me! I'm still suffering now so ttc hasn't been on my mind! I think we might have to take this month off.. I have a blood test in around 3 weeks time so itll be interesting to see what's happened with my tsh as I was put on the lowest dose of 25mcg. @Everythingcrossed2021 glad your gp let you try levothyroxine too! Fingers crossed for you!