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. :)

@Owl86 Thank you so much for your summary that is super helpful and makes a lot of sense. Great that you can get cracking with medication and ttc! Making me think should I see the person too! What were his details? Is the GP obliged to follow his instructions to issue you blood test referrals each week? I’m slightly confused how having a private doctor and GP works.

@ChinChilly amazing you have a Tommy’s referral process going on. Who is that to see? I wasn’t aware that they offer sessions in some way. At one of my lower points with it all, I emailed their helpline and the Response I got for one of the midwives so just so lovely - I felt completely heard. She also told me about a fertility charity that has a helpline run by ex widwives/nurses fertilitynetworkuk.org/access-support/support-line/

@Owl86 thanks, that link is really helpful. I think the problem with miscarriages is they don't always know why so I'm guessing it's hard to pin it down to something like a thyroid issue.

@Everythingcrossed2021 The referral for Tommy's is because I've recently hit the grim milestone of 3 miscarriages, Birmingham and Coventry Tommy's clinic will accept referrals for those who have had 2 miscarriages which may be handy to know. I'm not sure who I will see but they do all seem really nice there, they work along side Birmingham womens EPU and I honestly cannot fault any of the staff there, they were all so caring, made a really horrible procedure so much easier.

@ChinChilly I am so sorry to hear what you've been through, but pleased to hear Tommy's have given you a time frame. Take good care of yourself X

@Everythingcrossed2021 Glad the summary was helpful. That's a good question... I not sure if GPs are "obliged" to follow the consultant's instructions (I'd be interested to know the answer!), but he did say most are happy to do so.

@FlyingGiraffe Did you get a call from the endocrinologist today? And @CTMcg, have you had any luck with your GP about upping your dose?

My levothyroxine prescription arrived in the post this morning so I need to get myself down to a pharmacy tomorrow. @Shortmamashortcycles and @CTMcG: Out of curiosity, what brand do you take and have you had any side effects? I'm reading different things about different brands and getting quite confused over it all!

Hey @Owl86 so glad you finally got a script!

My box just says levothyroxine?

I got talking to a Doc today... got the same 'your tsh is 4.2, its under the 4.5 so its ok'

I said but its still away from the 2.5 thats ideal for ttc so she said so do you want to try 50mg? So i said yes and she wrote me a script but said get the bloods checked in about 3 weeks time this time instead of the 6 weeks!

@CTMcG Thank you, and I'm glad your GP was willing to up your dose to 50mcg! 😊 I was told to check my bloods 4 weeks after starting so a similar timescale to you. Good luck with it, let's see what happens!

@Owl86 forgot to mention, i take mine first thing before i even get out of bed (have a glass of water on bedside table) and dont have breakfast at least half an hour later and dont have tea/coffee until at least an hour after.

I had breakfast straight after taking it the first morning and it made feel really nauseous! Apart from that I havent noticed any side effects!

Reading the below, I'm gutted I was fobbed off when asking about my levels, when they knew I was TTC (and desperate). I can only be thankful it didn't cause any long term harm but wish I'd asked more questions and did more research.

I have to take my LevoThyroxine with food. It gets vom'd straight back up if taken on an empty stomach. Wonder if that'll remain after the baby is born.

Heads up for when you do conceive, if you get bad sickness/indigestion/reflux, check the advice for any meds. I'm on Omezaprole for indigestion and can't take it until 4 hours after LevoThyroxine x

@Owl86 I'm so glad your appointment went well and you have a prescription! Did they say what they were trying to get your levels down to? I had an actual face to face appointment today and it went really well! He prescribed me 25mcg levothyroxine and asked me to have a blood test in around 5-6 weeks. He gave me a letter to give to the surgery to put it on repeat! So I've already taken my first dose because I dont tend to eat breakfast til later! I have the brand Mercury Pharma. I've only taken the one but I feel fine 😂 no side effects! I'd say just see what the pharmacy has in stock and check if that's the brand you'd likely get each time you go. I've not read too much about levothyroxine causing side effects depending on the brand so I think you'll likely be fine. The endocrinologist said the same as yours really, as in there was no concrete evidence it would definitely help, but it wouldnt harm to try because it might! Fingers crossed! Let us know how you get on 😁

@Owl86, I have no idea! Whichever brand I'm sent. I think that's where I decided not to stress further, there's all sorts of stuff online about synthetic vs pig-derived levo and, frankly, I figured the chances the normal stuff wouldn't work for me were super low, and so it proved.

Just FYI, if you can, do try to take levo on an empty stomach and definitely a good 30 mins before eating any dairy as it will improve your body's absorption. Also don't take iron pills any time soon after - easiest for me is levo as soon as I wake up and iron pill before bed.

@FlyingGiraffe Yay, that's great news! I'm so pleased. 😊 My consultant wants to get my TSH stabilised somewhere between 0.5 and 2. How about you? I finally have my GP appointment tomorrow, she should have received the consultant's letter/report now so we'll see how she responds. I'm going to get the prescription tomorrow and start taking it on Saturday morning.

It's mainly the Teva brand I've read funny things about, some people seem to report bad reactions to it possibly due to the fillers (mannitol). Unfortunately Teva is what my local pharmacy stocks. But I know it's only those who have problems with it who'll be talking about it online, so I'm probably overworrying (as usual 😂). I've heard it's best to try and stick to the same brand after you start.

@Shortmamashortcycles Thank you. Yeah, you're probably right about not stressing further. Google is a dangerous place! I'll definitely be taking the levo about an hour before breakfast as I know taking it on an empty stomach and away from calcium is important for absorption.

@CTMcG and @Kiki275 Thanks for your tips too!

@Owl86 ive just looked at mine again and it is the Teva brand! Nothing strange or startling so far 7 weeks in☺️

@CTMcG Thank you, that's good to know you've had no problems with Teva! In the end I managed to get the Northstar/Accord brand this afternoon so we'll see how I go on that. Going to start taking it tomorrow morning.

I also had my GP appointment this afternoon. Thankfully she's happy to go along with the private endocrinologist's advice and do my regular blood checks via the NHS. She's already sent me the blood form for my 4-week check, so I'll get that done in mid-August and send the results over to the endocrinologist for him to review my levels and dosage.

So yeah... Fingers crossed, I guess! 😊

@Owl86 I’m so delighted to hear the progress you’ve made over the last few days. You must feel so relieved to finally feel listened to after such a battle. Keeping everything crossed for you that the thyroxine does the trick quickly 😊

@Whataboutye88 Thank you, that's very kind. 😊 How are things with you? Any progress with your endocrinology referral?

Hi everyone. Just a brief update from me and to check in to see how you are all getting on. I had a GP appointment last week to go through all my blood test results as my antibody test came back negative, and I was fully prepared to have to fight my corner again about going on meds, but amazingly she said lets just give the meds a go! So I've been on 25mg for just over a week now, and she said to get my bloods checks in 6 weeks time. From reading around it does seem like it will be too low a dose to do anything significant (my last TSH was 6) but it's a start!

@CTMcG Have you had your bloods checked again or is that coming up quite soon? Will be interested to know what being on 50mg will do to your levels.

Hi @Everythingcrossed2021, that's great news your GP agreed to trial the levothyroxine! Fingers crossed your TSH starts to fall quickly. 🤞 Keep us posted.

It's been two weeks since I started levothryoxine (50mcg). I needn't have worried about side effects, I've been absolutely fine so far. I take my daily pill every morning around 7am and try to wait two hours before eating breakfast just to make sure I've absorbed as much as poss on an empty stomach.

I'm having my bloods rechecked in two weeks, so it'll be interesting to see what's happened to my levels and whether I need a dose adjustment.

As I'd started on the levo, we did TTC this month after two cycles of delaying. But I'm 14dpo today and my period is starting up as I type. Gah. On the plus side, though, I now have some more time to try and get my thyroid on the right track before pregnancy. Trying to stay positive.

How's everyone else getting on? @FlyingGiraffe How have you found the levo so far?

Hi @Owl86 great to hear you're doing well on the thyroxine and haven't had any side effects! I'm doing the same, trying to take it early to give as long as possible for absorption. I was hoping to start feeling less tired etc. as they say you can start to feel the difference after 2 weeks, however I caught covid last week and its absolutely floored me! I'm still suffering now so ttc hasn't been on my mind! I think we might have to take this month off.. I have a blood test in around 3 weeks time so itll be interesting to see what's happened with my tsh as I was put on the lowest dose of 25mcg. @Everythingcrossed2021 glad your gp let you try levothyroxine too! Fingers crossed for you!

@FlyingGiraffe Oh no, really sorry to hear you caught blimmin' Covid! 😣 I hope you feel much better before too long.

Glad you're getting on OK with the levothyroxine though. I do actually think I'm less tired, but it's hard to tell if it's just a coincidence/my imagination. Need to give it a bit longer before making a judgement on that. I'm so impatient and nervous for my blood test already. 😂

Get well very soon! x

@Everythingcrossed2021 Still early but I am calling tomorrow morning to make the blood test apt so I will keep you updated❤️

It read the whole post so sorry. I was subclinical and TTC, and the GP offered to start me on meds, so I did.
It took me exactly 12 months to get pregnant, and I was in my 30’s.
Good luck.

Hi @Owl86, just checking to see how you’re doing now you’ve been taking your thyroxine for a while? Have you had your bloods retested yet?

I’ve made no further progress with my endocrinology referral, but did get my follow up blood test results after 6 weeks of taking thyroxine - my TSH is now 2.06 from 2.71 (and 5.71 after my last miscarriage) and T4 18.6. My TPO antibodies are still high though - 367 down from 399. I think we’ll start TTC
again from next month, but going to call the GP later this week to discuss my results because I’m anxious about getting the necessary monitoring in place before I get pregnant so my dosage can be adjusted if needs be. It’s a lot of info to absorb but so relieved the thyroxine is doing the trick. I really hope it is for you too.

Hi @Whataboutye88, I'm really pleased to hear your TSH is heading in the right direction! 😊 Has your GP just not referred you to endocrinology, or are you waiting for an appointment? Good idea to discuss the results and ongoing monitoring with them, I can understand why you'd be anxious about that.

Thanks for asking after me. My first monitoring blood test will be next Monday, just over 4 weeks after starting levothyroxine at 50mcg. So hopefully I'll know next week what my new levels are and whether I need a dose increase. I've noticed no obvious negative or positive effects since taking the levo, I feel the same as I always have apart from perhaps slightly less tired (which I may just be imagining).

How's everyone else getting on? @CTMcG Good luck for your imminent (I think?) blood test. And @FlyingGiraffe, I hope you're making a speedy recovery from Covid!

Hi @Owl86 yes I am having my 2nd blood test since starting levo tomorrow so hopefully will have results on friday afternoon!

Im the same, i don't feel at all different on it and im roughly 10 weeks on it now but hopefully its closer to 2.5 or under🤞🏼🤞🏼 will keep you all updated xx

@CTMcG Ooh, good luck for tomorrow! Fingers crossed and keep us posted. 🤞 x