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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:
Original poster
Owl86 · 30/07/2021 17:17

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?

OP posts:
Everythingcrossed2021 · 30/07/2021 11:04

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.

Original poster
Owl86 · 18/07/2021 14:26

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

OP posts:
Whataboutye88 · 16/07/2021 21:39

@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 😊

Original poster
Owl86 · 16/07/2021 18:53

@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! 😊

OP posts:
CTMcG · 15/07/2021 21:29

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

Original poster
Owl86 · 15/07/2021 21:25

@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!

OP posts:
Shortmamashortcycles · 15/07/2021 19:42

@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 · 15/07/2021 19:37

@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 😁

Kiki275 · 15/07/2021 18:43

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

CTMcG · 15/07/2021 18:28

@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!Smile

Original poster
Owl86 · 15/07/2021 18:24

@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!

OP posts:
CTMcG · 15/07/2021 17:40

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!

Original poster
Owl86 · 15/07/2021 17:23

@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!

OP posts:
Everythingcrossed2021 · 14/07/2021 10:24

@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

ChinChilly · 14/07/2021 08:51

@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.

Everythingcrossed2021 · 14/07/2021 07:39

@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/

Original poster
Owl86 · 13/07/2021 23:29

@ChinChilly I think there are definitely links between the thyroid and fertility issues. He just meant there are still a lot of unknowns and debates about it all, particularly when it comes to subclinical/milder hypothyroidism. So research is still ongoing.

I just found this really good article by a reproductive endocrinology specialist in the USA, which echoes a lot of what I was told today: pcosdiva.com/2018/04/hypothyroidism-miscarriage/

Glad the Tommy's nurse was able to give you some idea of timescales and what happens next. If it's any consolation, the 9 weeks we've been delaying TTC actually feels like it's flown past for some reason.

OP posts:
ChinChilly · 13/07/2021 23:05

@Owl86 that's interesting I thought the link between thyroid and fertility was pretty concrete. Great that you're getting somewhere now though.

I spoke to a nurse from Tommy's this afternoon, she said the wait from referral to first appointment is around 12 weeks, she talked me through what would happen next so I've got a much clearer picture. In theory 12 weeks isn't a long time but it feels like forever, seen as the consultant advised we should delay TTC until we've spoken to Tommy's

Original poster
Owl86 · 13/07/2021 22:08

@ChinChilly I'm not surprised you're still on a bit of a emotional/hormonal rollercoaster. Fingers crossed you won't have to wait too long to see the clinic, hopefully you'll be given some kind of an idea when you call that number. 😊 Look after yourself x

OP posts:
Original poster
Owl86 · 13/07/2021 22:00

So I had my private consultation with the endocrinologist today. He was very friendly and approachable, and I felt like he definitely knew his stuff.

The upshot is this:

He said that research into the link between the thyroid and fertility is still ongoing and isn't yet conclusive - which is why you won't get consistent opinions and advice across different doctors. And while some studies have indicated that women with a slightly elevated TSH and/or TPO antibodies have a higher risk of miscarriage, there's conflicting evidence over whether levothyroxine actually helps in these situations.

However, as the full story isn't clear yet, and levothyroxine is a safe medication with no major downsides, he feels taking levothyroxine would be perfectly reasonable in my situation. A sort of "well it can't hurt but could well help" approach.

So he's going to send me an initial private prescription (50mcg daily dosage) to start me off. He'll write to my GP to ask them to repeat my bloods after 4 weeks, and at similar intervals thereafter, so we can see how my levels are responding. But he's going to handle the results interpretation and dose titration himself, rather than leave it in the hands of my GP, to make sure I'm properly controlled.

He also said he doesn't think I need to delay TTC over this, and I could probably come off levothyroxine after pregnancy - unless I want to keep going because I've also noticed an improvement in my general wellbeing since taking it.

So there we go! There was a bit more to it than what I've written, but this was the gist. I found the experience very reassuring in several ways, and I'm feeling glad I decided to pursue this route. Just got to wait for his report (which he'll send to my GP) and the prescription now. 😊

OP posts:
ChinChilly · 13/07/2021 11:31

@Owl86 😂😂 please do update us! I'm ok, physically I'm back to normal, emotionally/mentally/hormonal still quite up and down just trying to keep myself busy! No news yet, the nurse did warn me there is a long waiting list though I've got a number to call so i can see how long it actually is

Original poster
Owl86 · 13/07/2021 11:12

@ChinChilly Thanks so much! Think I've just about perfected my little "thyroid story" speech now... 😂 I'll be back with an update later. How are you doing? Any news on your referral?

Hi @Rosiestraws. 😊

OP posts:
Rosiestraws · 13/07/2021 10:52

Pinning this

ChinChilly · 13/07/2021 10:51

@Owl86 good luck for today! Really interested in what the specialist says!