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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:
Everythingcrossed2021 · 01/07/2021 16:00

@Owl86 Very grateful that you started this thread indeed! I’ve just had bloods today to check for antibodies so shall see what the doc says when I get those results back. I didn’t think I had symptoms before ttc but now I have read up on it I’m wondering if I can attribute my heavy periods to it. Do you?

Some good news today is that I’ve managed to get a gynae appointment next month so I will ask them all things thyroid! To add to the thyroid issue I have a suspected subseptate uterus (Had no idea what this was prior to scan!) which came up in an ultrasound last month which could be adding to our difficulties - a lot to process so feeling very grateful that the gynae came through so quickly! I will first have that appointment and then take it from there if I need to go private for endo. I’ll keep you posted!

Original poster
Owl86 · 01/07/2021 15:30

Hi @Everythingcrossed2021, I'm so glad the thread has been helpful and made you feel less alone. 😊 I didn't think it'd get as many responses as it has, but it's been really good to share experiences, advice and frustrations with others in the same boat.

I'm so sorry you have a reluctant GP too. It really does seem to be pot luck, like you say. And it's so maddening when all the evidence out there suggests TSH should be under 2.5 for conception/pregnancy - I've got a bookmarks folder stuffed full of research papers and other resources on this!

It's definitely overwhelming, being your own advocate and feeling like no one's taking you seriously. Do you have any hypothyroidism symptoms or is your concern purely TTC related?

I'm now investigating going private too - I'm not far from London so I'll let you know if I come across any London endocrinologists that sound good. @Shortmamashortcycles, thanks for recommending Dr Simon Aylwin - I'll definitely take a look at him!

OP posts:
Original poster
Owl86 · 01/07/2021 14:49

@FlyingGiraffe I'm so upset...

I just rang the surgery to see if I could book a phone appointment with my GP tomorrow, to discuss the endocrinologist's response. Unbelievably, they once again tried to tell me it hadn't arrived yet!

After arguing with them about that, eventually they found the response (🤦‍♀️) but told me I probably won't be able to speak to my GP tomorrow as she's "too busy". So I asked what I was supposed to do?! They said "All the advice says is to recheck your bloods 6 weeks from now and then to try you on medication at that point, if necessary."

I haven't seen copies of the correspondence between my GP and the endocrinologist, but I get the feeling my GP didn't explain my situation fully. Because if she had, I can't understand why the endocrinologist hasn't advised to start me on levothyroxine straightaway. My TSH was too high for conception/pregnancy in 2015, 2019 and now 2021, showing this is clearly a longstanding issue and not a random blip - so why make me wait another 6 weeks before prescribing?! All it'll mean is another 2 cycles of delaying TTC as I creep even closer to 35.

I just had a big frustrated and angry cry. It just feels like it's going to take months to get to the point where my husband and I can TTC again - starting medication is only half the battle, as it can sometimes take a while to find the right dose to get TSH levels down and stabilised. And I'm just worried about us getting older. 😢

Once I've calmed down I'm going to try and come up with a Plan B - which will probably involve a private consultation with a different endocrinologist. And changing GP surgeries!

OP posts:
Shortmamashortcycles · 30/06/2021 19:18

@Everythingcrossed2021, if you're London based, I would recommend Dr Simon Aylwin, Consultant Endocrinologist.

He's who I saw and was very good at taking me seriously.

Re: pills for life - it's up to you, really! If other than TTC, you feel fine with your current levels, then after you're done with trying/having babies, I think you could stop taking them and just get your levels monitored annually / if you start feeling other hypothyroid symptoms. The endocrinologist can advise!

Everythingcrossed2021 · 30/06/2021 18:06

Hi everyone.
I'm so pleased to have found this thread - thank you for sharing all your experiences and insights, I feel a little less alone. My partner and I have been trying for about 9 months, and I've had some bloods done - all okay apart from TSH. In Jan it was 4.37 and June it was 6 - annoyingly it has gone up! I have been told my T4 is normal and the doctor wants me to get another blood test to check for antibodies. My doctor, like a lot of yours seems very reluctant to put me on meds as its borderline, but a friend's doc (her TSH was 5.5) but her on straight away - really seems pot luck!

Is it the case with going on medication that you are on it for life?

I'm thinking about ordering Medichecks test just to get another reading and also thinking about going to see a private Endocrinologist - thank you for sharing that list of doctors whoever did that! Has anyone been to any in London that they would recommend?

Today it all feels a bit overwhelming, having to be your own advocate all the time but I know you will all know what that feels like!

Thank you!

FlyingGiraffe · 29/06/2021 21:01

@Owl86 it seems like the weeks just slip away waiting for replies dont they?! Hope you hear by the end of the week. I may ask reception later in the week how long to expect to wait and who the gp has actually messaged as I'm not really sure how long things are taking around here at the moment. I finally started AF properly today so thats a relief because I wondered what was happening...8 days of spotting first is just rubbish though 🙄🤦🏻‍♀️

Original poster
Owl86 · 29/06/2021 12:51

@FlyingGiraffe Thank you! My GP is off till Friday after today, so unless I hear this afternoon I could still be waiting a bit longer - maybe even into next week. 😩 I'll let you know when I hear. Fingers crossed you won't have to wait too long for your answer either. Hopefully things are a tad more efficient where you are! 😂 x

OP posts:
FlyingGiraffe · 28/06/2021 20:56

@Owl86 I've just seen your message! Oh you're so close to finding out now!! I hope it's the news you're wanting to hear! X

FlyingGiraffe · 28/06/2021 20:54

@Owl86 Did you ever get through or are you still in the queue?! Haha! 😉😂 I get super nervous ringing too! It's even worse when you're waiting for so long for them to answer! Well done on getting on to endocrinology again though! Hope the GP found the response 🤞

@Dyra 1.58 sounds like a pretty good result. Not jealous at all! 🤥😂 fingers crossed you get your bfp soon 😊🤞 x

Original poster
Owl86 · 28/06/2021 20:51

@Dyra Glad you had some positive news - that's one less thing to worry about! 😊

I spoke to the surgery earlier. Initially they were adamant the response still hadn't arrived, but I kept pushing and suddenly they magically found it...

I've been told I should get a call from my GP within the next few days, once they've had a chance to review what the endocrinologist said. So the waiting's not over yet, but hopefully I'm a step closer now. 🤞

OP posts:
Dyra · 28/06/2021 18:07

Just got my TSH results back as 1.58. So no need for the Thyroxine this time around apparently. I can't remember what it was pre first baby, but I know it was much higher than that.

Hope you got your results back from your GP @Owl86. I'm doing a similar thing with pre-conception supplements. Taking Boots combined folic acid and vitamin D tablets. Though I'm planning on taking a higher dose separate version once they run out.

Original poster
Owl86 · 28/06/2021 11:13

Hi @FlyingGiraffe!

I rang the GP surgery late Friday afternoon to see if a response had finally come through. They said no. 🤦

But I just rang Endocrinology for the fifth time and they said they definitely sent the response through to my GP on Friday. So I'm now 12th in the telephone queue for the surgery to try and find out what's going on... I'm so nervous!

Well done for getting your GP to ask the Endocrinologist for advice, it sounds like you've sent her all the right things. Fingers crossed you don't have to wait so long for an answer! 🤞

The only pre-conception supplements I've been taking over the last year or so are Vit D spray (1000miu) and Sainsbury's folic acid tablets. I've not tried Pregnacare/Seven Seas. But I've actually just increased my Vit D intake as the private thyroid function test I did a few weeks back showed I was at the very low end of the normal range. And Vit D is linked to thyroid function.

I'll report back once I've got through to the surgery...

OP posts:
rathernotshare · 27/06/2021 12:56

@Shortmamashortcycles thank you! Really appreciate the help, I'm just mulling over options

Shortmamashortcycles · 27/06/2021 12:41

@rathernotshare, the private endo can send a letter to your GP saying they've prescribed you levo and you can usually get repeat prescriptions from your GP and just pay the usual prescription cost (unless you get pregnant and then you get an exemption). You may need to pay for the first lot before all of that goes through, but it wasn't eye-watering, from what I remember...

rathernotshare · 27/06/2021 10:35

Just thinking, if I paid for private thyroid testing and they said I need medication, would that mean paying for my meds? Or could I go back to my GP?

FlyingGiraffe · 26/06/2021 15:14

@Owl86 👋 I'm guessing you didnt hear on Friday? Hope they get back to you on Monday if not! I messaged back saying yes I'd really like for advice from the endocrinologist, and that I was still having a lot of the symptoms despite the better results. I also mentioned that I'd read about it causing longer periods which is really getting me down now! And I put in some stuff from the btf and nice guidelines about tsh being in the lower end for conceiving. She is going to let me know when she hears back. My t4 was 14.7 in March and 15.9 this time so I think that's better too? Do you take any supplements? I decided on a whim to buy pregnacare today because I noticed it contained Iodine which could help support the thyroid function. I've read mixed reports about them but thought I'd give them a go. I started spotting 7dpo this cycle and it's been like this for months now so I thought it was worth trying something different. Ive been taking seven seas for about 5/6 months before now.

Shortmamashortcycles · 25/06/2021 04:46

Hi @showmethegin, sadly a lot of us become experts because it's such a fight to be taken seriously when we know something's not right. But places like MN are useful for feeling like it's not just you!

I am so sorry to hear about your miscarriages, I hope you're doing ok. My sister struggled to conceive and one of the elements turned out to be hypothyroidism - so there is a link.

IIRC, the TPO level is pretty high, right on the brink of being clinically relevant (which is 100), even though your TSH level is ok-ish. It's worth looking into, although I wouldn't say it's def that it's the cause... do the ms units have another theory?

I feel like a broken record, but is there any way you can push for an endo referral with a focus on fertility and thyroid?

Again, not an expert but while there's no really sure way to lower those TPO levels, it's not a given that they're causing the mc's - but a bit of thyroid support for your TSH and T4 levels wouldn't hurt. You could try selenium and zinc supplements and I would recommend vit D for anyone with a thyroid concern since the two always seem to go together!

Good luck and do keep us updated!

showmethegin · 24/06/2021 21:48

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

showmethegin · 24/06/2021 21:47

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?

CTMcG · 24/06/2021 14:39

@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!!

Original poster
Owl86 · 24/06/2021 14:30

@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!

OP posts:
Original poster
Owl86 · 24/06/2021 13:46

@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?!

OP posts:
Shortmamashortcycles · 23/06/2021 22:24

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. 🤷‍♀️🤷‍♀️🤷‍♀️

rathernotshare · 23/06/2021 21:57

@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

Shortmamashortcycles · 23/06/2021 21:50

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?

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