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 all, how's everyone getting on?

No real news from me. My GP is still waiting to hear back from the endocrinologist about whether to put me on levothyroxine or not, and they don't seem to have any idea when they'll get a response.

If I still haven't heard anything by the end of this week, I think I'm going to try and see an endocrinologist privately as I don't want to keep delaying TTC any longer than I have to.

Hi @Owl86, funny you should message! I was thinking about checking this thread as I had my blood test this morning to check my thyroid levels after 3 months. Its felt like such a long time to wait to have them. In a way I really hope that they're the same result so that I can push for medication. I'm 7dpo today and started spotting again and apparently it could be linked to the underactive thyroid so I'm desperate to try something as I feel like I'm not having any luck. It's coming up to 12 months trying now and although it's still within the timeframe they say it can take, especially for my age, I just feel like its hopeless! I dont blame you on going private. I may have to look at doing the same...it doesn't bode well that you haven't heard back from the endocrinologist. It's been a while now hasn't it? Mine hasn't even messaged them yet! 🤦🏻‍♀️ I'm over all the waiting around now!

Hi @FlyingGiraffe, good to hear from you again.

That's a coincidence about your blood test today! Keep us posted on your results - fingers crossed they're similar to last time so you can push for levothyroxine.

I completely understand your frustration and feeling of hopelessness. I'm so over all the waiting too, and it's only been just over a month for me! I've been regularly pestering my GP surgery over the last few weeks, to check if the endocrinologist has replied yet, but they always say no and that I'll just have to keep waiting.

I was feeling pretty fed up this afternoon, so I decided to ring the local Endocrinology department in an attempt to find out what's happening and chivvy things along. They found my GP's request and said they'll make sure it's looked at tomorrow. It sounds like the request had just been languishing on the system all this time, with no one actually doing anything with it. 🤦 So I'm glad I rang. I'm going to call again in a day or two to check on progress. I feel like making a frequent nuisance of myself is the only way I'm going to get anywhere!

We've skipped two cycles TTC now, as we felt we should follow the NICE advice to delay trying. I just hate all this waiting around and not knowing when we'll be able to start again. I'm so worried about getting older.

Fingers crossed we both finally get somewhere by the end of this month! 🤞

@Owl86 oh my goodness, that's a great result from a telephone call! Brilliant news 🙌 I think you're probably right. I hate pestering but I guess we have to do it if we want to get anywhere?! 🤷🏻‍♀️ I'm going to message my gp on Wednesday to see if she can look at my results so I'll let you know. Let me know what the endocrinologist says for you? It'll be interesting seeing as we got almost identical results last time! I made sure to cut out the biotin after reading about that affecting tsh so I'm wondering if I'll now get a true result. I really hope we both get somewhere now 🤞

@FlyingGiraffe Yeah I hate pestering too, it feels so awkward! I'm sure I must be on some kind of blacklist at my GP surgery now. 😂 But sometimes it has to be done. I really hope the Endocrinology department does look at the request today, like they said they would. If I've still not heard anything by Friday, I'll chase again.

Fingers crossed you get your results by tomorrow. 🤞 Be interesting to see what they are this time, especially since you cut out the biotin.

Hopefully things are now in motion for you now @Owl86. I wouldn't wait until Friday to pester if they don't get back to you though. All that will happen is it'll get left until after the weekend, and could get forgotten about all over again. Do it Wednesday, Thursday, or next Monday if this week seems too quick.

Getting my bloods tested tomorrow thanks to you posting. It reminded me to get it done. So ta for that. ❤️

@Dyra Thank you. Yeah, I meant I'd call first thing Monday if I've still not heard by the end of the week. Like you say, it'll just get forgotten about over the weekend if I call on Friday! I actually rang them again earlier, after my last post, to double check it's being looked at today. They said yes, so fingers crossed... 🤞

Sorry you've still had no luck TTC #2 yet, but glad my post prompted you to get your bloods checked. 😊 Hopefully you can start back on the levothyroxine if your results are a bit iffy again. How's your PCOS at the mo?

Ah ok. Fx you get the A-OK from the endocrinologist quickly and can continue TTC, but with Thyroxine.

Thank you for thinking of me. PCOS is doing its thing I guess. I'm still hairy and overweight, but the Metformin seems to be working and has re-kick started my cycles. No idea about ovulation, but given things are going the same way it did before, I'm probably not. I'm oddly feeling ok about it though. I think I've accepted that conceiving naturally is just not going to happen for me, and that re-tracing the steps I had to take for DD is weirdly comforting.

Good evening all!

Not much to update on yet - I am now on my 5th week of taking levothyroxine, going to call to make blood test apt by the end of this week because it could be 1-2 weeks before they squeeze me in. Tsh levels were 6 five weeks ago so fingers crossed its working! Will update!

@Owl86 I had my blood test results today and have been feeling confused about the next steps ever since. My tsh has gotten better from 4.96 to 4.31 so in terms of 'normal levels' I'm now only just above the normal range which is 4.2 but far from the ideal reference range for conceiving. They have said that they dont think it's worth referring me to endocrinology for this but we could ask for advice from them and for me to let her know what I think. I obviously would like the advice but I'm feeling a bit lost on how to word it to get the best outcome. I expected my result to be the same or worse as I've been feeling so many of the symptoms of hypothyroidism. What would you do? Am I being stupid asking for help still when it's not as bad as it was? I was thinking to send her the British thyroid guidance where it says about tsh being in the lower range. I honestly dont think she thinks it's going to make a difference but I'd like to try. Did you hear back from the endocrinologist today? 🤞🙂

What's the craic on this thread? Sorry but it goes way back and a lot of reading 😂

We have been TTC for 18 months with no pregnancies, GP said my thyroid was slightly out but wasn't concerned (5.7 TSH)

@rathernotshare, the tl:dr version is to push your GP for a referral to an endocrinologist, preferably one with a background in fertility and hypothyroidism. 5.7 is way too high, it should be below 2 for conception. Easily resolved with a simple daily pill (you may need a few blood tests and a few dosage shifts to get you to the right level) but sadly most GPs are a bit rubbish with this and don't take it seriously.

Am jumping on this thread but agree with all of these commenters. Personally, it took 10 cycles to conceive DD, 8 before I got levothyroxine, 2 afterwards.

@Shortmamashortcycles thank you! He said that they don't prescribe anything unless it's way over, as going under is also bad and I'm only slightly out of range (granted not for TTC). We'll be going back soon anyway as we've been tested and apparently everything was standard except for that, so I'll be sure to raise it!

Sorry another question , they tested my t4 after the TSH and it came out at 12.3 (normal range) does this affect anything?

@rathernotshare, your GP is a bit of a downer, eh? The risk of you overmedicating isn't that hard - usual dose is 25mcg and monitor with a blood test after 4 weeks. For reference, my TSH wasn't even 4 but the endo dumped me straight on 50mcg of levo, checked 4 weeks later, TSH hadn't dropped that much so bumped me up to 100mcg - same level as my DH who's got clinical hypothyroidism! Didn't need to go higher through pregnancy and levels postpartum still nicely hovering just under 2. Makes you realise how relaxed the specialists are about things!

Good luck challenging the GP. I will say it's not entirely a magic solution - I still have shortish cycles and now have annoying spotting from c.8DPO since DD. Blegh! At least I know it's not my thyroid on the blink...

@Shortmamashortcycles thank you! Yes he's not fun. I was referred by my optician for a diabetes check as she'd seen something dodgy in my eye and he just scoffed and said I think we'd know if you were diabetic!! They did test me though and I'm not haha.

Not really sure how to go about the conversation though. Always reluctant to start with 'the internet says' but I don't see how he can possibly know everything about everything!

No, my T4 was always in reference range. T4 goes up as TSH goes down (IIRC). What was your T3?

Sorry I'm not keeping up with my replies. It's tough, you just have to dig your heels in and say the reference range for TSH is 4.5, you're over that AND TTC, you've been trying for over a year, the least he can do is refer you to an endo.

Look up hypothyroidism symptoms and reel them off - if he won't refer you for fertility, he should for the actual condition!

Do you have access to private medical insurance? You could get a private GP appointment then use the referral to see an endo privately - if it's about being diagnosed with hypothyroidism (not fertility, most policies won't cover that), you might get the endo cost covered... or just go private anyway, it'll cost a few hundred so not cheap but maybe an option?

@Shortmamashortcycles thank you I'll give them a push! Think we responded at the same time haha, I can't see anything on my record for T3.

I actually called my GP (different surgery) years before TTC thinking I might have a thyroid issue as I will easily sleep 14+ hours a day if you include naps, but they were always very dismissive as my weight is on the low end of healthy. They didn't even test it back then but it has been mentioned on every unrelated blood test since and they keep calling it a blip! However they reckon it's not elevated enough to cause any symptoms. Think I might be able to get private healthcare through work, I'll look into it! Thank you for all the info, it's really appreciated, can't believe I've been fobbed off so much

Good luck! Yeah there is a tendency to assume that if your weight is low, you must be fine. As my naturally slender, clear skinned friend found out when she finally got a PCOS diagnosis after years of weird periods! Bodies are strange - some folks feel ok with shocking TSH levels and some people feel out of whack the moment their levels go up. 🤷‍♀️🤷‍♀️🤷‍♀️

@FlyingGiraffe Glad you got your results back yesterday, I can understand the confusion!

If I were you I'd take your GP up on the offer of getting advice from the endocrinologist. 4.3 is a better than last time, but TSH does naturally fluctuate a bit anyway - and you're still way out of range for TTC/pregnancy. Plus you're experiencing symptoms as well, which should be reason enough to seek advice regardless of TTC. (I'm not sure if I have symptoms or not, it's hard to tell.)

What was your free T4 this time, out of interest?

I'd definitely show your GP the BTF guidance and wave the NICE guidelines at her too: cks.nice.org.uk/topics/hypothyroidism/management/preconception-or-pregnant/

As for me, I rang my GP surgery yesterday afternoon to see if they've had a response through from Endocrinology yet. They said no, still nothing. 🤦 How many phone calls will this take?!

@Dyra Thanks for the luck, and fingers crossed for you too. Glad the Metformin is making a difference, and hopefully the same things will work for you this time as they did with your DD. 😊

@CTMcG Can't believe it's been 5 weeks already! How have you found the levothyroxine? Any side effects, or has it all gone smoothly? Fingers crossed your TSH has come down now, keep us posted!

@rathernotshare Your TSH is definitely too high, and your T4 sounds like it's very near the bottom end of normal too. From what I've read, I believe T4 should ideally be towards the upper end of the reference range for TTC, otherwise there's a risk you'll tip over into overt hypothyroidism if you become pregnant. But T4 goes up as TSH comes down, so levothyroxine would sort both issues out. I'm sorry you're being fobbed off by your GP too, it's clearly a common theme in this thread. Keep pushing, and good luck!

@Shortmamashortcycles Thanks for sharing your experience and advice with us, it's really helpful to hear! It's a bit crazy it took 100mcg of levothryoxine to bring your TSH down when it wasn't even 4 to begin with. Makes me wonder how many dose adjustments (and months) it might take to sort this out... Gulp! 😬

@FlyingGiraffe I just rang Endocrinology again. They now say the advice requests are being looked at by the consultant later this afternoon, so I should hear tomorrow or Monday. Not entirely sure I believe it after my experience so far, but we'll see!

@Owl86 i take it as soon as i wake up with a full glass of water and dont eat breakfast till at least a half hour later and no caffeine till 2 hours after. Everyone is different but seems to work ok for me and i dont feel sick then!😊

I cant see an awful change in how i feel, still as tired as i was before but feel psychologically better knowing im getting it sorted and its still early days!

Im on cd64 now🙈and i finally got a really high opk reading this morning and lots of ewcm so i think my body may finally be in the process of ovulation so fx!!

Hi all, I hope you don't mind me hopping on as you all seem so up on this stuff! I've had three miscarriages and have been fobbed off by two recurrent miscarriage units about my thyroid but I feel there is something up! Both my dad and aunt have hypothyroidism. My results of my last bloods were
TPO Antibodies - 98.6
TSH - 3.06
T4 - 10.9

Any advice?

Oh and to add they were taken back in December, I demanded another blood test which I had yesterday so just waiting for the results