TTC and subclinical hypothyroidism

[Owl86]

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. :)

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

@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!!❤️❤️

!!!!!!! @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!

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. 😊

@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

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

@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!!

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

@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

@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

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.

@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

@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

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

@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?

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!

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. 🤞

Thanks @Owl86!

12.5 is ridiculously small (I have to break the 25mcg tablets in half!) but at the time I was just so relieved they'd agreed to give me anything on the NHS that I didn't want to push too hard. Unsurprisingly I don't feel any different since I started taking it, but I've also only just got my first period after the last miscarriage so know my body is a bit all over the place at the moment anyway.

Will see how things go later this week but may well ask for your private endo recommendation since we're lucky we could afford to go that route. Are you London / SE based?

Although it's stressful, in a weird way I'm also glad there's 'something wrong' since it's given me something to focus on / try to control. It's definitely made TTC more of a science lesson than I ever thought it would be, but on the plus side I know a whole lot more about how my body works (or should work) than I used to (silver linings??) 🧐

@nellyinthegarden No worries. 😊 Yes, I'm in the London/SE area and the private endo works at a central London clinic. But he does offer video appointments too, so he can see patients from all over. I'll send you some details via DM later just in case you need them after speaking to your GP.

TTC is definitely one big science lesson, that's for sure!

Welcome to the club @nellyinthegarden! Likewise, really sorry to hear your experiences but glad to hear it’s been helpful in some way to know that there is something that could be improved that could help things. 12.5mg does seem like a very small amount. I’m on 25mg and will be getting my bloods done next week so will see what impact that has done to my TSH which was at 6.37 last time is was measured. I’ll be interested to hear how your levels have been impacted @FlyingGiraffeas we were put on the same dose (but I can’t remember what your last reading was?).

Very grateful for this little group I gotta say! On to my 11th cycle I think now, so the support from this group is really helpful X

Hello all,

Like @nellyinthegarden I've been following this thread for a while and am so grateful for the pooling of shared experience.

@owl86 would you be happy to DM me the details of your private endo too?

My story is that I'm right at the start of my ttc journey but, as I'm nearing 40 and it can be a bumpy road, I'm feeling time is of the essence. Due to irregular cycles post pill I recently discovered that I'm subclinical hypothyroid with tsh of 7 and antibodies in the 300s. My GP has started me on 25mcg of levo as I said I was ttc, but doesn't want to re-test again for 8 weeks and has only talked about getting the tsh down to around 4. I'm worried that she is not going to aim below 2.5, and that it's going to take a long time to get there with a starting dose of 25 mcg and >4week gaps between tests. Eager to arm myself with an endo's 2nd opinion if necessary! TIA

@Everythingcrossed That's interesting I've been put on a starting dose of 25mcg too for a tsh of 7. I've only been on it a week and a half though..getting so impatient I have to distract myself :D

Hi @Songbird50, so glad you've found the thread helpful. Happy to drop you a DM with the details of my endo.

Me again - got my blood test results, although haven't been able to speak to the GP about them yet.

TSH is 3.48 and FT4 13.5 (improved from 3.94/11.6 a month ago).

So both going in the right direction but very slowly! And both within the normal ranges for general life but not for conception/pregnancy.

So here's the thing - I'm on cycle day 3 at the moment, and wondering whether to try this month or whether to wait until my thyroid numbers look better (and given holidays won't be able to speak to the GP until right in the middle of the fertile window).

What do you think? And would it be mad to increase my dose to 25mcg (currently 12.5) without speaking to my GP first? I'd never normally consider something like that but also don't feel like there's much to lose at this point, since 25mcg is the introductory dose for most....

Hi everyone.
A little update from me. I have been on 25mg of Levothyroxine for about 6 weeks now and I've just had my bloods results back:
TSH - 2.92 (down from 6.37)
T4 - 15.6 (up from 13. something).

I'm pretty happy with those numbers considering I'm on such a low dosage, but I plan to speak with the doctor next week (can't get an appointment until then!) to discuss hopefully upping it slightly to get that TSH well below 2/2.5.

Hope everyone else is getting on okay. @nellyinthegarden I hope you've managed to speak to your doctor since you messaged to get their advice/approval about upping your dosage.