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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:
Shortmamashortcycles · 23/06/2021 21:45

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

rathernotshare · 23/06/2021 21:45

@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!

Shortmamashortcycles · 23/06/2021 21:42

@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...

rathernotshare · 23/06/2021 21:37

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

rathernotshare · 23/06/2021 21:33

@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!

Shortmamashortcycles · 23/06/2021 21:27

@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.

rathernotshare · 23/06/2021 19:27

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)

FlyingGiraffe · 23/06/2021 19:04

@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? 🤞🙂

CTMcG · 22/06/2021 19:16

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!

Dyra · 22/06/2021 14:34

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.

Original poster
Owl86 · 22/06/2021 11:46

@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?

OP posts:
Dyra · 22/06/2021 11:17

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. ❤️

Original poster
Owl86 · 22/06/2021 11:01

@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.

OP posts:
FlyingGiraffe · 21/06/2021 21:54

@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 🤞

Original poster
Owl86 · 21/06/2021 21:02

Hi @FlyingGiraffe, good to hear from you again. Smile

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. Sad

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

OP posts:
FlyingGiraffe · 21/06/2021 19:03

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!

Original poster
Owl86 · 21/06/2021 15:12

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.

OP posts:
Iszzy · 30/05/2021 04:25

Elevated TSH levels are definitely worth investigating further to make sure nothing else is going on.

However a recent study did show that women with TSH levels between 2.5 - 4.5 had limited effect on your chances of conception by IUI.

This may explain why some women with subclinical hypothyroidism still fall pregnant naturally?

fertilityscience.org/normal-but-elevated-thyroid-levels-compared-in-iui-cycles/

Hopefully that gives you some hope its not all doom and gloom.

Smile
Original poster
Owl86 · 29/05/2021 22:46

@Lavinia321 It certainly seems you're right about needing to keep on top of things yourself! Thanks for the reassurance that things can work out well, and congratulations on your 4th pregnancy - I hope all goes smoothly on the home run. 😊

@FlyingGiraffe I'm sorry you didn't have much luck with your GP this week either. Yes, the lack of control is exactly what bothers me... So frustrating, isn't it?! I could tell my GP wanted to repeat the tests in 2-3 months before doing anything else, really. But she (thankfully) agreed to write to the endocrinologist for advice now, rather than wait. She said it'll probably take a few weeks to get an answer.

I'm just hoping the endo will tell her to prescribe levothyroxine straightaway, rather than mess about with even more testing when my 2015 and 2019 results show my thyroid has clearly been on the blink for at least 6 years. Who knows what they'll say, though. 😣

That's interesting about your spotting too... My AF usually starts 13/14dpo as well, but since starting TTC this year (weird concidence?!) I've spotted on and off from around 11dpo onwards. My ultrasound didn't find any obvious causes so I don't know if it's a progesterone thing, a thyroid thing, a stress thing, or just a random thing my body's decided to spring on me to drive me even more crazy! Do let me know how you get on with acupuncture, I'd be interested to hear.

Fingers crossed we both get some good news in June... We can but hope for the best. 😊🤞 x

OP posts:
FlyingGiraffe · 29/05/2021 13:57

@Owl86 Sorry your GP isnt sounding too keen. I had the same kind of response from my GP this week and its deflating and hard not being in control of things you think could help! Mine said she wants to see what my results are like when I repeat them after 3 months (that's in June for me, so not too long to go) and then if they are still 'off' then she will contact the endocrinologist, say we're on the list for fertility investigations and do they think it will be worth trying Levothyroxine. Only then does it sound like she'll prescribe it 😣 and that's only if the endocrinologist says yes... so I'm in the same boat as you! Is yours speaking to the endocrinologist now or do you have to wait?

I've been trying acupuncture this cycle too as I suffer with spotting from 8dpo (sometimes earlier) til AF starts, usually 13/14dpo. I'm currently 12dpo and had a bfn this morning! The GPs seem to think spotting isnt an issue but it is frustrating wondering if its implantation or af every month! 🙄

Original poster
Owl86 · 28/05/2021 14:58

I just had my call with my GP. Annoyingly the links I'd sent her in advance (NICE guidelines, BTF info etc) hadn't reached her for some reason, so I had to make my case from scratch.

Despite trying my hardest to persuade, she won't prescribe levothyroxine until she's taken advice from an endocrinologist. She said GPs don't usually prescribe levo in these situations, they just refer patients to the fertility clinic after 6-12 months of unsuccessful TTC for them to sort? Clearly that's not true, and it seems like a strange approach/pathway when the NICE guidelines clearly say those with subclinical hypothyroidism should delay TTC until stabilised on levo!

So it's not an outright no, but it's just another delay so I'm a bit glum. 😔 I just hope the endo gives my GP the green light to prescribe, and fast.

OP posts:
GoingGently · 28/05/2021 11:58

Thanks @Owl86... it's been a rough ride!
I've just contacted one of the doctors on the list. Quite keen to find someone that can prescribe T3 etc if needed before getting tests done.

Curiously, I did a home cortisol test a couple of years ago which flagged up DHEA (I've read this is linked to poor egg quality). NHS endocrinologist completely rubbished it so nothing was ever done. Actually ended up feeling quite humiliated having shown him the report! Interested to note that the majority of the doctors on the Thyroid UK list seem to test for and treat with DHEA so that's quite exciting!

Has anyone tried natural dessicated thyroid instead of just synthetic T4, and how did you find it? I've read reports of people having tons more energy and better mood after making the switch

Lavinia321 · 28/05/2021 11:34

I haven’t read the full thread. You’re doing the right thing showing them the Nice guidelineS. I had to do similar to get proper treatment. Very few GPs seem to be on top of thyroid issues and particularly so as regards pregnancy. You need to keep on top of your results yourself, checking they fall within the correct reference ranges for ttc and then pregnancy and making sure they do tsh as well as t4 each time they test so you get a proper picture of what’s going on. Otherwise you’ll be told the results are fine when they might not be.

If it’s any help, I’m nearing the end of my 4th healthy pregnancy now though so please be reassured that with the right treatment etc all can go absolutely fine!

Original poster
Owl86 · 28/05/2021 11:26

@GoingGently You can check your T3 yourself through private self-test kits. I got the Medichecks Advanced Thyroid Function one, but there are lots of other options if you have a Google.

I was going to suggest the doctors list from Thyroid UK, but looks like you've already found that!

I'm so sorry you've had such a horrid time this past year. 💐

OP posts:
GoingGently · 28/05/2021 11:14

Just got this from Thyroid UK... very useful!

thyroiduk.org/wp-content/uploads/2021/01/Private-Doctors-and-Practitioners-List.pdf

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