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 Dont be daft! Your mad ramblings are great! 😂 that's a good idea about asking for the correspondence to double check the actual wording used both ways!

Ah it's your third cycle delaying?! That sucks. I know it's not long in the grand scheme but time just seems to tick on waiting for answers. Brilliant you had no spotting. I would love to see if mine improved if my thyroid was controlled better.

I'll let you know tomorrow! I don't expect them to have anything but maybe I'll be pleasantly surprised! 🤞😁

@Owl86 I spoke to the surgery today and it just so happened that they had a response from the endocrinologist this afternoon, but all it said was a date...so I'm waiting on them finding out what that's for! They think its maybe for a phone consultation. They also said they'll help me with a gp referral if I decide to go private still. So a little bit of progress today 🙌😊

Hi Ladies!

Just a wee check in with me! Got my bloods done today after 6 weeks on levo, calling on Friday for results between 2-4pm so fingers crossed I am well under 6 that i was 6-7 weeks ago!

Will keep you updated! @Owl86 i was talking to a girl on a fbook ttc page and her doc keeps fobbing her off going on levo! Why are so many docs arseholes about writing a script for it?! X

Hi again, I posted on here a while ago about banging my head against the GPs brick wall about thyroid function and TTC, I just wanted to say as difficult as delaying TTC until your thyroid is addressed is definitely a good idea. I had another MC, a MMC this time obviously I don't know for sure that my thyroid caused it but it definitely could of been a contributing factor. The consultant i saw at the hospital actually suggested we didn't TTC until we had been seen by the recurrent miscarriage clinic and had all the checks, I'm hoping they will take my TSH levels more seriously.

Hi can I join this thread. I came off the pill last January and we started to try for a baby last April. I got bloods taken in May and the doctor called me to say my thyroid test was 4.5 and had to be repeated. This was done on Friday and I need to call back tomorrow to find out the results. It has been extremely frustrating that I have not been able to see a doctor, only nurses and have not been given the chance to ask questions so I am so glad I have came across this thread.

@ChinChilly ❤ I'm so sorry you've had to go through such an awful experience. I feel so sad thinking of you and the fact that you raised concerns about your tsh and previous mc's, and you were still dismissed. I hope that you have answers soon. It feels like weeks just pass waiting for answers but I think it's worth the wait as I cant imagine how worried you must be for future pregnancies now. If they can give you answers and solutions I imagine it would help a lot ❤ keep in touch with how you get on xx

@CTMcG what dosage of levothyroxine did you go on if you dont mind me asking? Did you get yours through the gp or private? My gp seems reluctant until shes spoken to an endocrinologist. I have my doubts as to whether she'll prescribe medication even though she's asked for their advice 🤷🏻‍♀️

@FlyingGiraffe just the lowest dosage so far - 25mg. I rang doc about 8 weeks ago asking for bloods to be done as start of the year, my doc advised to get it checked when i start ttc. 6 weeks ago I found out i subclinical hypo, tsh level was 6. Doc said as i was only starting ttc i could see how i get on or i could start levo so i asked for a script and that was it! Sounds like i was really lucky with my doc!

@FlyingGiraffe sometimes I feel really angry at my GP surgery and how dismissive they are and I do wonder if all this could have been avoided, I've raised my TSH levels and TTC 3 times and everytime I'm fobbed off. I'm not sure I'll ever enjoy a pregnancy, I've been referred to Tommy's in Birmingham, I've heard good things about them so hopefully they will be more proactive.

@FlyingGiraffe Brilliant news that the endocrinologist has responded already, things sounds much more efficient where you are! Bit weird that all it says is a date though?! 🤣 Hope you find out tomorrow what that's about! Great that they said they'd write you a referral letter too. If I ask mine for one I'll clearly be waiting 58 years, so if I go private I'll definitely need to find someone who will accept patients without referrals.

@CTMcG Great that you got your 6 week bloods done today, fingers firmly crossed your TSH is on the descent. 🤞 Keep us posted. I have no idea why there's such resistance among GPs when it comes to prescribing levothyroxine. It's a safe (when correctly dosed) and cheap drug that could really make a big difference to those with thyroid issues who are TTC/pregnant. 🤷

@ChinChilly I'm so very sorry to hear you've had another MC. 💐 It makes me mad that they didn't take you seriously enough before, but I really hope you manage to get somewhere with the recurrent miscarriage clinic. It does seem like delaying TTC might be for the best, frustrating as it is. Wishing you lots of luck.

@Sunstar16 Hi! Sounds like you're in a similar position to me. I had my thyroid function checked in May and my TSH was 4.93. I just had repeat bloods done early yesterday so I'm going to call tomorrow to see if the results are back. Let us know how you go tomorrow.

I will @Owl86. Good luck for tomorrow.

@Owl86 I think delaying probably is the best, i think some people manage pregnancy and high TSH well but it is a risk factor. At the moment I'm happy to hold off TTC as the thought of being pregnant again terrifies me at the moment but I was warned the waiting list is around 10 weeks so I'm not sure how I will feel by then!

Hi @Whataboutye88, just realised I never replied to your post a few days ago!

I'm really sorry to hear about your MCs. 💐 Seems to be a bit of a theme in this thread sadly. I fully agree it's ridiculous that women often have to go through multiple MCs in a row before even being able to get a simple blood test to rule out some possible causes.

At 2.73, your TSH is still above the commonly recommended max limit of 2.5 for TTC. In fact, some advise it should really be under 2 and ideally closer to 1.

So I suppose it depends how you feel about delaying TTC vs. the possible risks of continuing. My DH and I are postponing till my TSH is sorted out, as per the NICE guidelines, but it's a personal decision. I'm nearly 35, first time TTC too, and I can completely relate to the feeling that time isn't on your side.

How long do you have to wait to see the endocrinologist?

I have just been on with my doctor's surgery. I have to call back on Friday if I want to speak to a doctor but the receptionist said my results came back at 2.72 and 12.7.

Hi @Sunstar16, glad you got you results back. Interesting that your TSH has come down a bit, but your T4 sounds like it's on the low side. Will you speak to a GP on Friday?

I also rang my GP surgery today, to see if my repeat blood test results were back. The receptionist confirmed they'd arrived, but said there's a note on the system saying a GP needs to discuss them with me. That's usually code for "There's a problem", so I'm guessing my TSH was abnormal again. I asked if she could share more details, but she just said I'll need to speak to my GP.

I'm hoping this means I'm now one step closer to a levothyroxine prescription, but I still think there'll be more fighting ahead!

Hi Op,

I am subclinical too and during my previous pregnancy they put me on medication to keep my TSH under 2. So the GP doesn't really know what he is saying, understandably, as they are not specialists.

@ChinChilly I'm so sorry your surgery has been so bad. I don't blame you for being upset. It might be worth saying something to them once you've spoken to the recurrent miscarriage unit if they suggest you treating your thyroid. It obviously wont change what's happened to you, but if it helped prevent them being so dismissive in future and understanding the link between thyroid & fertility it's worth telling them. What was your tsh again? Mine was 4.31 at the end of June and the endocrinologist has responded by saying that they agree that I need to be reviewed.

@CTMcG it sounds like you were super lucky with your gp!! Let us know how your results are on friday?

@Owl86 when are you speaking to the gp? Do you have to ring to book an appointment again? Hope you get answers soon! My gp said I should have my phone by me on the 15th?! She thinks it's going to be a phone consultation but there's no time mentioned and I've had a letter tonight but theres no mention of the 15th on it?! It just says that having reviewed the info provided, that the clinician has agreed I need to be reviewed by the team. Bizarre! But good..it gives me hope that they think something isnt quite right - so fingers crossed they can help!! 🤞😊

@FlyingGiraffe when I first asked them about it my TSH was 4.4 it has since come down slightly to 3.9 my T4 is also on the low side at about 10. I am considering putting in a complaint, I feel so let down by them and not listened to. One of the three doctors even said she was aware of the evidence about TSH being below 2.5 but wasn't going to treat my thyroid, the other knew I was pregnant and my TSH was at 3.9 and just marked the result as no further action. I am going to wait until I've spoke to the miscarriage clinic and got my facts straight and then I might put a complaint in, even if it stops one more woman having to go through what I have to be heard. My surgery hasn't ever even consulted a endocrinologist about my TSH.

@FlyingGiraffe Well I already have an appointment booked with my GP for next week, by which time my antibody results should be back too. But the receptionist today said I could ring first thing tomorrow to get put on the list for a callback from a GP in the afternoon. So I'm going to try my luck and see what happens... My GP isn't working tomorrow so I'd have to speak to a different GP, but I'd actually welcome the chance to speak to someone else!

Interesting about the 15th, sounds a bit confusing but fingers crossed it's a phone consultation! 😊🤞

@ChinChilly I can completely understand why you're so upset and feel let down. It's really not fair. I can't believe one GP said she knew about the 2.5 limit but wouldn't treat you, and that another just ignored your TSH of 3.9 while pregnant?! I'd love to know the reasons behind these sorts of blasé attitudes, which fly in the face of the NICE guidelines and evidence, as it just makes absolutely no sense to me. I'd be considering a complaint too, and I'll be interested to hear the miscarriage clinic's take on it all. So sorry you're having to go through this.

@Owl86 my GP surgery has always been terrible, I've always said I need to find a new GP and never got round to it, I'm kicking myself now I haven't done it before. Yeah I'm looking forward talking the miscarriage clinic, keeping my fingers crossed the referral doesn't take too long

@ChinChilly that's terrible. I really don't understand the reluctance to at least even consult a specialist. I guess because its subclinical they might think it doesn't need medicating yet, but the guidelines say to refer if trying to conceive when subclinical so it makes no sense for them to stop that happening. I've seen posts in my local area on facebook asking people which gp practice they recommend. I wonder if you have this around you? Might be worth researching other surgeries around your area in case you do decide to move. Hope the referral is quick for you xx

@Owl86 I think I'd be calling tomorrow too...the fact they wouldnt tell you anything makes it even more intriguing! Hope it goes well 😊

@ChinChilly I actually decided at the weekend that I'm going to switch surgeries as soon as I've got an answer from my GP (either positive or negative) about the levothyroxine. The surgery I want to register with has much better reviews, and the fact they have some info about the thyroid and pregnancy on their website gives me hope they might know what they're doing!

Fingers crossed you get a speedy referral to the clinic. 🤞

@Owl86 sorry just noticed this thread.
I was diagnosed Subclinical following a previous pregnancy. My GP surgery wouldn't consider medicating me, despite my cycles not returning to normal following that pregnancy.
It took longer to conceive than previously and I had to do both OPKs and BBT to work out ovulation. As soon as I did conceive I was immediately started on 25mg LevoThyroxine and referred to an Endocrinologist. He then upped it to 50mg and subsequently up to 75mg in 3rd Trimester.
I'm dreading them taking me off it after the birth as I never realised just how much I tolerated symptom wise before and how much better I feel now.x

@FlyingGiraffe Just rang the surgery again. I spoke to someone else who said that, as I already have an appointment booked for next Friday, I can't speak to another GP today (I thought that might happen!). So I told her I'm considering going private and I'd like to get hold of a copy of the blood report and Advice & Guidance correspondence (both ways) ASAP. She's put in a request and I should receive the documents via email this afternoon - though I won't hold my breath!

If the endo's advice does indeed state that I also need to test positive for antibodies to be prescribed levothyroxine, I'm starting to wonder if there's even any point in waiting for my appointment next week. My GP clearly has limited knowledge of these issues so no doubt they'll want to follow the endo's advice to the letter. So I'm tempted to just forget it and book a private appointment immediately, but I'll wait for the documents to (hopefully) arrive later before deciding. I still wonder if there's been some kind of miscommunication or misunderstanding between the GP and the endo.

@Kiki275 Hi and thanks for sharing your experience, I hope your pregnancy is going well so far. Why do they want to take you off the levothyroxine after the birth? Surely they should let you carry on taking it (albeit maybe at a lower dose) if it's making you feel loads better?

@Kiki275, no-one suggested I should stop levo after my first pregnancy. You may need a blood test c.12 weeks after birth to see if your dose needs adjusting and then an annual check. I'm pregnant with my second and have been merrily taking my 100mcg dose since DD was born with no adjustment - it's the right level for me clearly!

@Owl86 to be honest it's partly presumption from what I've read and also they've not made my prescription repeatable as it's just for the duration of pregnancy. It's on my list to discuss with the Endocrinologist next time we have a call. I have absolutely no desire to go cold turkey and return to "normal" levels as an experiment when dealing with a newborn. I have tested positive for antibodies and have family history so it's just a matter of when, rather than if, I fall below subclinical.
Looking at my notes, TSH was 7.83 pre pregnancy, 3.99 on 25mg and 50mg to bring