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 @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!

@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.

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?

@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...

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

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...

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.

@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. 🤞

@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

@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 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

@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 🙄🤦🏻‍♀️

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!

@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!

@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!

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!

@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!

@Everythingcrossed2021 Hypothyroidism symptoms are so non-specific that it's hard to tell if I have them or not! I can definitely put a tick against some of the signs on the list, but they could easily be caused by other things.

Gosh, that must have been a shock about the subseptate uterus. But I'm glad you've got a gynae appointment so quickly. 😊 Fingers crossed for you and do keep us posted with how you get on!

@Owl86 Sorry I’ve only just read your other message about the day you have had - I’m so sorry you don’t feel like you are being listened to. I can totally relate - it’s beyond frustrating and tiring and consuming. Some days/weeks it can feel like that’s all I’m thinking about. Be angry today, let it all out and then like you say start thinking about a plan B when you’re head is a bit clearer.

Keep us posted!

@Everythingcrossed2021 Thank you so much for your understanding. Yeah, I think about it all the time too so you're not alone on that. It's hard, isn't it? I'm also going through a really stressful time for other reasons right now, so trying to deal with this on top is a bit overwhelming.

Anyway... Like you say, I'm going to let myself be angry and upset today, and then tomorrow it's time to dust myself off and come up with a Plan B. I will not be beaten!

@FlyingGiraffe Just realised I didn't reply to your last message. Did you have any luck finding out how long you can expect to wait for a reply from Endocrinology? I'm glad AF showed up in the end, though 8 days of spotting can't have been much fun. 😞

I’m so glad I have come across this thread, but also sad to hear how hard some of you have had to push to be taken seriously and get tests/treatment.
You all seem so clued up I wonder if I could ask for some advice, as I’m not sure whether to put off TTC this month. I’ve had two early miscarriages this year, one at 7 weeks in March and one at five weeks in May. My GP wouldn’t run any tests until three miscarriages in a row (which seems bloody unfair in itself given that there are causes that can be easily ruled out with a blood test), so I went to private fertility clinic. Luckily all scans were normal, but my TSH came back at 5.73. The clinic prescribed me 50mg of Thyroxine and asked for me to get my GP to repeat the TSH and also thyroid antibodies before I started taking them, and again after six weeks. Was three weeks wait so got them done privately too, and in two weeks from 10th June to 23rd of June my TSH had reduced to 2.73. TPO came back at off the scale - almost 400. The GP has said they’ll refer me to an endocrinologist as she suspects possible Hashmitos (despite the normal second TSH reading). But in the meantime I’m wondering if I can TTC now my level is more normal? My first test was done only 2-3 weeks after I miscarried, and I’m wondering if the pregnancy caused my TSH to rocket and it was still falling then? The fertility clinic recommended that I up my dose to 75mg as soon as I get a positive test, to take progesterone pessaries and high dose folic acid, but I just feel so nervous about possibly being pregnant before seeing the endocrinologist in case I need ongoing blood tests or more treatment to manage what is obviously a bit of a wonky/confused thyroid. I’m almost 34 and it’s my first time TTC, so I don’t feel time is on my side. Any advice very gratefully received 🙂

Hello.

I'm late to the thread but I have some experience to share that may be of use.
(1) Hashimoto's sufferers do better on a very low TSH. At 0.4 or 0.5 I'm normal. 0.6-0.7 I am not quite right. 0.8+ I'm going to sleep waaaay too early. 1.5 and I might as well not be taking the drugs. There is a peer reviewed paper on this somewhere, forgive me if I don't search it out.
(2) Mary Shomon is the thyroid patient advocate you need. I got my best pregnancy advice from her pages. Because of her I got a TSH test the minute I confirmed pregnancy. Yes, baby was already sucking that thyroxine out of me. I had blood tests every two weeks to check if my levels were changing. And at 20 weeks they did. Baby started making their own thyroxine and I was suddenly over medicated.
(3) Post Partum thyroiditis is a thing. I happened to have a blood test drive days after birth and whoosh! It was up. Took me months to get that back to normal.
(4) Diet can play with the absorption of your thyroxine but hard exercise certainly can. Exercise makes you absorb more thyroxine, so you can get a suppressed TSH. I had marvellous parathesia in January when I went back to training twice a week.
(4) Resistance training was the key to really good health for me. I can diet rigidly, but it's lifting the big weights that changed my body enough that I could conceive. Not sure why, but I was super fit and my blood sugar was awesome, despite me being enormous.

Good luck, all of you. I'm afraid the NHS knows very little about managing the condition apart from chucking levothyroxine at you. Oh, and I got to the stage I was halving 25mg to get the correct dose.

So, an update...

My GP surgery rang early this morning. Apparently they gave me incorrect info yesterday. The endo said I should have my bloods redone 6 weeks after my last test, not 6 weeks from now. As it's already been 7 weeks, I'm going to go down to the blood clinic early on Monday morning - I've read TSH is usually highest first thing before you've eaten.

The endo has also advised I should have an antibody test (TPO) to check for Hashimoto's disease, so I'll be having that done too. Thyroid antibody results can take longer to arrive than the standard thyroid function results, so I'm booked in for a phone appointment with my GP in a fortnight to discuss next steps once everything's come through.

So this all sounds a little more hopeful than yesterday.

But... I'm still a bit worried and confused. Apparently the endo has advised my GP to prescribe levothyroxine if I get similar results to last time AND test positive for antibodies. I'm actually already 99% sure I won't test positive for antibodies, as recent Medichecks thyroid test showed I didn't have them.

I've not found anything during my research that suggests women with subclinical hypothyroidism who are TTC should only be prescribed levo if positive for antibodies. The NICE guidelines and BTF guidance certainly don't say that. I do think I read that having antibodies can further increase the risks of complications, but I'm sure raised TSH and low T4 is reason enough to prescribe. So this all seems a bit bizarre to me.

My plan is to get the bloods done Monday and then gather lots of evidence that I should be prescribed levo even if I test negative for antibodies. If I still have no luck persuading my GP when we discuss the results in a few weeks, then that's definitely the point at which I'll be going private. I'm going to start researching endos now, just in case.

(Also, the endo said I only needed to get my TSH under 3, which is higher than the 2.5 I've read everywhere. But there's no point thinking about that now - I just need to get a prescription first!)

@Owl86 I'm so sorry for not replying til now. Some days I feel like I need to try not to obsess so much! #whoamikidding Did you get your bloods done today? It seems very strange that the endocrinologist has said that about the antibodies as nothing I've read suggests needing both to go onto thyroxine either. Let's hope the Gp listens to you when you get your results 🤞 that should be later this week no? Your doctors surgery sound like they're not too fun to deal with by the way! You've battled with them about the endocrinologist letter so many times already! Glad they rang and apologised! I chickened out of calling! I might ask tomorrow as itll be over a week then. I've found someone who does private appointments without a gp referral which I think I might be needing at this rate! So if I hit a brick wall with the gp that's my next step 🙃

Hi @FlyingGiraffe! No need to apologise, it's good to take a break from these things (including my mad ramblings 🤣).

Yeah, I got my bloods done first thing this morning... I expect my thyroid function results will be available in few days, but because the antibody results will take longer to come back I'm not actually booked to speak to my GP until the end of next week.

I still can't find anything to suggest that you need positive antibodies to go onto levothyroxine when TTC. It seems very odd to me, so when I ring for my thyroid function results later this week I'm tempted to also ask for copies of the correspondence between my GP and Endocrinology so I can see exactly what was said both ways. 🤔

AF arrived yesterday so I'm into my third cycle of delaying TTC now. On the plus side, it's nice not to have deal with the anxiety of the TWW! Interestingly, I had no spotting in the days before AF this time. Think that's the first time in about 6 months. I don't even know if the spotting has anything to do with my thyroid or not, though.

Good luck if you call your GP tomorrow! If it's been a week, I think it's a reasonable time to ask if anything's come through from Endocrinology yet. It'll be really interesting to hear what the advice is compared to mine. Let me know how you go! 😊