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 ladies! Firstly, can I say that it is a relief to see this thread. I looked just a few weeks back and only found old ones, so thank you @Owl86. I am not really a thread starter myself .

I wanted to share my experience. I am also 34 and our stories are very similar. My husband and I started 'trying' last October and got pregnant immediately. However, this unfortunately resulted in a CP. Since then, we have been actively trying, but to no avail.

In March, I decided to go to my doctor to get blood work done, to check my LH, progesterone, etc. I guess she decided to do a thyroid check as well, though I did not know at the time. I got a call a few days later telling me I am hypothyroid, TSH 5.2 and Free T4 of 16. Since I mentioned wanting to be pregnant in my appointment, she put me on 25mcg of levothyroxine and I started immediately.

After researching all over the internet, DH and I decided to 'skip' April and May, given the risk to the fetus and of MCs, until my levels were lower. I just had my 6 week blood test and am SO happy to say I am now at TSH 2 and Free T4 of 14! Interestingly, this month is the first time I am getting high readings of my LH. Before starting the medication, the highest I got to was 15 but now I am up to 49 (I use the Mira fertility tracker because I was so confused about what was going on, prior to my diagnosis). Even the Clear Blue ovulation monitor would never give me a smiley, but today I got my first. Since this improved exactly as I started taking the medication, I think there is definitely a link, but that is just my opinion. Needless to say, we will be doing our best now and I actually just got my peak today .

Hypothyroidism is real and we all need to advocate for ourselves. Asking women to just wait I think is nonsense when the medication is harmless and helps immediately. I can say that finally knowing why I was always tired no matter how much I slept, and just felt generally 'blah' is much better now. Also good to know that it is advised to essentially double the dose as soon as you know you are pregnant, and to go in for bloods immediately (according to my doctor).

I really hope this information can be useful and best of luck and baby dust to us all!

@TryingToNotTry thanks for sharing! That makes me feel so much better now i am on it! Im on 25mg too and have to go back in 6 weeks to get checked again! Hopefully mine will be in the range too by then! Baby dust to you!

@Wheresallthesleepgone Thanks for sharing your story and advice, and I'm sorry to hear about your loss. Well done for standing your ground in the next pregnancy - the more I read, the more it seems women really have to advocate for themselves on thyroid issues. Glad you now have two DC. 🙂

@ChinChilly Hooray for slowly getting somewhere with your GP! Keep us posted. Interesting that your Vitamin D was also low, what dose did you take for 7 weeks? I think I'm going to double my daily dose to 2 sprays (i.e. 2000iu) for a few months, and then retest to see where I'm at. Hopefully the improved weather will help too.

@CTMcG Glad you're doing OK with the levo so far, apart from the mood. Fingers crossed AF starts for you very soon so you feel a bit better! x

My GP surgery has rearranged today's appointment till tomorrow afternoon, as there was some kind of mix-up. Bit bummed as I'd got myself all psyched up, with my extensive notes and speech ready to go. 😂 At least it's only a little longer to wait though.

@Owl86 the dose I was given was 40,000iu so quite a hefty dose! Hopefully the predicted heatwave at the weekend will help!

Apologies if you've said already, but if you're in London I'd try to be referred to the reproductive medicine unit at UCLH. It's a great department, although struggling with wait times at the moment.

I have pcos and issues with my thyroid. There isn't a magic number Re the amount of thyroxine you should take. And it really should be monitored regularly.

Hi @TryingToNotTry, thank you so much for sharing your story! As you say, it's such a relief to speak to others here in similar situations.

It's reassuring to know your GP put you on 25mcg after just one blood test. I've been worried that mine would want to repeat my bloods in a month or so, just to check my first results weren't a "blip" - I think that's what they usually like to do. But I'm hoping to persuade them to put me on a low dose of levo now, without waiting to retest, given previous results in 2015 and 2019 both gave a TSH of over 2.5 too - so it's clearly not a one-off thing. I'll see what they say tomorrow.

We decided to skip TTC this month for the same reasons as you, we just didn't want to risk it. And even if I'm lucky enough to be put on levo tomorrow, we'll probably have to skip at least the next couple of cycles too while I wait for my TSH levels to come down and then stabilise. I'm a bit gutted about about delaying, and worried about getting older, but I guess it can't be helped.

It's also great to hear your TSH levels came down to 2 within 6 weeks. Is your doctor going to keep you on 25mcg, or increase the dose to try and get TSH down even further? Did they say anything about a referral to an endocrinologist?

Thanks so much again, and wishing you the best of luck with it all - do keep us posted with how you get on! 🙂

@ChinChilly Oh wow, that sounds like a mahoosive dose! I'd have to take 40 sprays a day to hit that. 😂 Fingers crossed for your next test, that's got to have done the trick surely?!

@okokok000 Thanks for the tip about UCLH, I'm not too far from London so I'll check it out.

@Owl86 well I hope so, I'm having another blood test on the 7th June so fingers crossed it made some sort of difference

I don't think I was diagnosed with sub-clinical hypothyroidism (I honestly can't remember my blood results), but as with others, the fertility specialist wanted a TSH below 2.5, while my bloods were above that level. I told my GP I wanted Thyroxine and why, and was prescribed 25mg. Later bloods showed I was still above 2.5, so the dosage was upped to 50mg.

Unfortunately, I didn't fall pregnant naturally while on Thyroxine, but that's probably down to the PCOS more than the thyroid. I did conceive after only one dose of Clomid though which was nice.

TTC#2 now. Currently not on Thyroxine, but if not pregnant by the end of next month, I'll get my bloods done. It will no doubt show a "normal" TSH but be far too high for fertility. Hopefully I won't have any issues getting Thyroxine again. Still got some left over from last time anyway.

My mum has Hashimoto's. Before she knew, she had 12 miscarriages in nine years. She had a 'small for dates' baby at 33 yrs old who weighed 2lb. He was left to die. When it was discovered he was still breathing 20 min later he was put in an incubator which was a warm cot. The doctors then told her she had Hashimoto's. I was born two years later.

I had been trying for a baby for 12 months - wasn't pregnant. Doctor said that's only 12 eggs! After two years they agreed to do a blood test. My TSH was 64. I have Hashimoto's.

I was put on a low dose of T4 and got pregnant about a year later and miscarried.

I was referred to a gynaecologist who did bloods and took family history. She trebled my T4 dose.

She explained to a student doctor (whilst I was in the room) that when thyroid levels are low then prolactin levels are high. This prevents pregnancy/can cause miscarriage. Prolactin is the hormone produced when breastfeeding and levels will be high. This prevents pregnancy in the early months of breastfeeding. When thyroid levels are normal then prolactin levels will be normal which will be much lower compared to when breastfeeding.

It took five years for me to have my first baby. Then went on to have two more fairly quickly as I was conceiving around the time of weaning - thus my prolactin levels were dropping.

Interestingly when my vit D levels were tested for the first time the level was undetectable. I was completely depleted. I took 10,000 units a day for 12 weeks to get a normal level. Still take supplements to maintain 'normal'.

Recently been diagnosed with EDS hypermobile as have my daughters.

I now take T3 which really suppresses my TSH as it creeps up when only on T4.

Since taking T3 I've not had the tendency to become depressed, been much less anxious - and constipation I've had most of my life is suddenly cured.

An under active thyroid can have a huge effect on conceiving and carrying a pregnancy.

Hi @fairyannie this is so interesting! A couple of questions if I may.... did you take anything to bring your prolactin levels down or did they fall naturally when T4/TSH normalised? Did you manage to get NHS GP to test and prescribe T3 or did you need to go privately for that?
I've always been a bit of an anxious person, but I'd say I developed an anxiety disorder about 5 years ago, around the time that my Hashimotos kicked in. Don't think I've ever managed to get my T3 tested. My vit D was low too.... can be a trigger for autoimmune diseases

My levels fell naturally before my second pregnancy (first successful pregnancy).

Falling prolactin levels resulted in two further pregnancies as I breast fed.

T3 was prescribed on NHS by endocrinologist - been on it 10 years as TSH was always high at annual endocrinologist check. Been suppressed since first went on it.

When I took T3 the first day - after about half an hour my body felt warm and my skin had colour instead of deathly white (my skin had always been cold to touch) and I felt 'normal'. Must have never felt normal before. I was dancing around the house singing to the radio - my family were quite scared. 😬

Good stuff.

Meant to say was on 150mg T4 for more than a year before I got pregnant again.

Seemed to have wasted years before I was prescribed that amount.

I'd been on 25 mg for a year. Then 50 mg for a year. Then 150 mg for ages.

I was seriously 'under prescribed'.

Oh wow that's amazing!

@Owl86 Yes, I consider myself lucky to have been prescribed immediately and to have my levels lowered in 6 weeks. I asked to be referred to an endocrinologist but that was not welcomed, so I have to continue working on that, but for now, will stay on 25mcg. If you can persuade them to put you on a low dose today I think that would be good, because then you have about 6 weeks to wait from then. I understand your concerns about delaying and felt the exact same, but at the end of the day, it is better to have a healthier you and a healthier pregnancy as you well know, so just keep reminding yourself of that ! Best of luck today!

@fairyannie lol, I know exactly what you mean about feeling better! So glad to hear you are more like yourself again. It's amazing, this entire time I just thought I was more tired and less enthusiastic than most. It truly makes a workd of a difference and the thyroid impacts everything it seems.

In fact, I went for my third ultrasound today (O-day) and learned that at day 16 (late) my leading follicle is still too small (16mm). Not sure if this means I will release an immature egg or no egg at all, and cannot help but wonder if this could be linked to hypothyroidism. Let's see. Trying to remain optimistic , which is all we can do.

It's just a bit tiring...

@TryingToNotTry Thank you. 😊 Yeah, my rational side knows deep down it's for the best. If I managed to get pregnant now but something went wrong, it'd be horrible - plus I know I'd blame myself regardless of whether it was actually caused by my thyroid or not. And my TSH levels may be stopping me catching anyway, in which case it's pointless trying to begin with.

That's frustrating about your follicle. I guess it could be linked to the hypothyroidism since it seems so many things are, like you say! Fingers crossed a healthy egg pops out very soon.🤞

And thank you for the luck for today, I'll report back after. So nervous.

I'm now wondering about T3 and wanting to get mine checked. The GP won't do it (I've asked before) and I think getting an NHS endocrinology referral would take an absolute age - can't even get a GP appointment these days.

Can anyone recommend a private endocrinologist in London that specialises in thyroids AND fertility? In my experience to date, endocrinologists have little interest in fertility and have rubbished the TSH under 2.5 idea to me, which gives me little confidence from a TTC point of view. But neither have I been able to find a fertility specialist who deals with thyroid patients - and is able to prescribe T3 if needed. So any help navigating this lot would be welcome!

I've had a huge amount to deal with this past year, pandemic notwithstanding. Having lost our baby to TFMR last summer I've really been struggling and crying almost every day for the past year. I've assumed this is grief (and it definitely is), I'm just wondering now if there's something physical going on as well. Since losing the baby my hormonal mood swings during my cycle have been really intense and I've felt physically depressed and weepy after ovulation, for instance (even before TTC). I'd be really curious to get my T3 checked, I really feel like something is off balance!

Just got this from Thyroid UK... very useful!

thyroiduk.org/wp-content/uploads/2021/01/Private-Doctors-and-Practitioners-List.pdf

@GoingGently You can check your T3 yourself through private self-test kits. I got the Medichecks Advanced Thyroid Function one, but there are lots of other options if you have a Google.

I was going to suggest the doctors list from Thyroid UK, but looks like you've already found that!

I'm so sorry you've had such a horrid time this past year. 💐

I haven’t read the full thread. You’re doing the right thing showing them the Nice guidelineS. I had to do similar to get proper treatment. Very few GPs seem to be on top of thyroid issues and particularly so as regards pregnancy. You need to keep on top of your results yourself, checking they fall within the correct reference ranges for ttc and then pregnancy and making sure they do tsh as well as t4 each time they test so you get a proper picture of what’s going on. Otherwise you’ll be told the results are fine when they might not be.

If it’s any help, I’m nearing the end of my 4th healthy pregnancy now though so please be reassured that with the right treatment etc all can go absolutely fine!

Thanks @Owl86... it's been a rough ride!
I've just contacted one of the doctors on the list. Quite keen to find someone that can prescribe T3 etc if needed before getting tests done.

Curiously, I did a home cortisol test a couple of years ago which flagged up DHEA (I've read this is linked to poor egg quality). NHS endocrinologist completely rubbished it so nothing was ever done. Actually ended up feeling quite humiliated having shown him the report! Interested to note that the majority of the doctors on the Thyroid UK list seem to test for and treat with DHEA so that's quite exciting!

Has anyone tried natural dessicated thyroid instead of just synthetic T4, and how did you find it? I've read reports of people having tons more energy and better mood after making the switch

I just had my call with my GP. Annoyingly the links I'd sent her in advance (NICE guidelines, BTF info etc) hadn't reached her for some reason, so I had to make my case from scratch.

Despite trying my hardest to persuade, she won't prescribe levothyroxine until she's taken advice from an endocrinologist. She said GPs don't usually prescribe levo in these situations, they just refer patients to the fertility clinic after 6-12 months of unsuccessful TTC for them to sort? Clearly that's not true, and it seems like a strange approach/pathway when the NICE guidelines clearly say those with subclinical hypothyroidism should delay TTC until stabilised on levo!

So it's not an outright no, but it's just another delay so I'm a bit glum. 😔 I just hope the endo gives my GP the green light to prescribe, and fast.

@Owl86 Sorry your GP isnt sounding too keen. I had the same kind of response from my GP this week and its deflating and hard not being in control of things you think could help! Mine said she wants to see what my results are like when I repeat them after 3 months (that's in June for me, so not too long to go) and then if they are still 'off' then she will contact the endocrinologist, say we're on the list for fertility investigations and do they think it will be worth trying Levothyroxine. Only then does it sound like she'll prescribe it 😣 and that's only if the endocrinologist says yes... so I'm in the same boat as you! Is yours speaking to the endocrinologist now or do you have to wait?

I've been trying acupuncture this cycle too as I suffer with spotting from 8dpo (sometimes earlier) til AF starts, usually 13/14dpo. I'm currently 12dpo and had a bfn this morning! The GPs seem to think spotting isnt an issue but it is frustrating wondering if its implantation or af every month! 🙄

@Lavinia321 It certainly seems you're right about needing to keep on top of things yourself! Thanks for the reassurance that things can work out well, and congratulations on your 4th pregnancy - I hope all goes smoothly on the home run. 😊

@FlyingGiraffe I'm sorry you didn't have much luck with your GP this week either. Yes, the lack of control is exactly what bothers me... So frustrating, isn't it?! I could tell my GP wanted to repeat the tests in 2-3 months before doing anything else, really. But she (thankfully) agreed to write to the endocrinologist for advice now, rather than wait. She said it'll probably take a few weeks to get an answer.

I'm just hoping the endo will tell her to prescribe levothyroxine straightaway, rather than mess about with even more testing when my 2015 and 2019 results show my thyroid has clearly been on the blink for at least 6 years. Who knows what they'll say, though. 😣

That's interesting about your spotting too... My AF usually starts 13/14dpo as well, but since starting TTC this year (weird concidence?!) I've spotted on and off from around 11dpo onwards. My ultrasound didn't find any obvious causes so I don't know if it's a progesterone thing, a thyroid thing, a stress thing, or just a random thing my body's decided to spring on me to drive me even more crazy! Do let me know how you get on with acupuncture, I'd be interested to hear.

Fingers crossed we both get some good news in June... We can but hope for the best. 😊🤞 x

Elevated TSH levels are definitely worth investigating further to make sure nothing else is going on.

However a recent study did show that women with TSH levels between 2.5 - 4.5 had limited effect on your chances of conception by IUI.

This may explain why some women with subclinical hypothyroidism still fall pregnant naturally?

fertilityscience.org/normal-but-elevated-thyroid-levels-compared-in-iui-cycles/

Hopefully that gives you some hope its not all doom and gloom.