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. :)

@Shortmamashortcycles that's reassuring, thank you 😊 x

Hi everyone. I am following this thread very closely still and will keep you all posted on my progress. I am waiting for my antibodies blood test results so @Owl86 it will be interesting to see what they say about that result and if that sways them in anyway regarding medication. I will also feedback what the gynae says about thyroid when I have my appointment early August. I'm currently in a phase where I want to stop ttc for a couple of months anyway just for a (mental) break but might be wise anyway while all this thyroid stuff is up in the air.

@Kiki275 Yeah, it definitely sounds like it's worth discussing with your endocrinologist - particularly in light of your positive antibodies too. Hopefully they'll agree to keep you on the levo after the birth. It would seem very unfair to make you suffer unnecessarily while coping with a newborn. 🤞

@Everythingcrossed2021 Yes, please do keep us posted with how you get on. 😊 It'll be interesting to see what your antibody results are and hear what the gynaecologist says. I should be getting my antibody results next week, but I already know they'll be negative thanks to my recent private home test. It does make me wonder what the reason is for my persistently wonky thyroid as apparently almost all cases of hypothyroidism (subclinical and overt) are down to autoimmune disease/Hashimoto's. And none of the other causes I've read about apply to me. 🤷

So my GP surgery has just sent over my latest blood test report and the endocrinologist's advice letter.

My thyroid function results are:

TSH: 4.38 (compared to 4.93 last time)
FT4: 15 (compared to 14.7 last time)

So my TSH is now just within the "normal" range. But it's clearly still too high for TTC/pregnancy, and my FT4 is only fractionally higher than last time.

TPO antibody results still haven't arrived, but I already know I'll be negative thanks to my private test.

The endo's advice letter says "If FT4 low normal with high TSH and positive TPOs, start on Levothyroxine 25mcgs daily, aiming for TSH of 1-3mu/L pre-conception."

Given my TSH has come down into the "normal" range, and I know I won't be positive for antibodies, I'm now pretty certain I'll get nowhere further with my GP when I speak to them next week. So I'm going to start contacting private endos to see if I can book an appointment ASAP.

(Also, I just looked up the endo who advised my GP and it seems they're a Diabetes rather than thyroid specialist - which could maybe explain the slightly odd advice.)

Hey girls.

So my tsh level has came down from 6.Something to 4.something and receptionist goes 'says no action needed' and i said oh well should i like up my dose cuz thats still too high for ttc and she repeated 'it says no action needed', af finally came today and although i am happy tsh is lower i feel like now ive been fobbed off and im crying! Definitely af and hormone related why its made me cry as its definitely good its came down but now i feel MEH. Will call to get speaking to a doc next week about it as i am not just leaving it there!

Oh @CTMcG I'm sorry! 😥

The upper limit for "normal" TSH is usually around 4.5 ish (varies a bit from lab to lab). My guess would be that, like me, your TSH is now just below that limit - hence why the report says you're normal and no further action needed.

But as you say, it's definitely still too high for TTC and they can't just leave it there. So stick to your guns and speak to your doctor about it next week.

On the plus side, it's good your TSH has come down a bit - shows the levothyroxine is doing the trick. 😀 It just sounds like you need a higher dose to get it down even further. 25mcg is only the lowest dose.

Hope you feel better soon! It's so tiring, and hormones won't be helping. But your doctor has sounded fairly reasonable so far, so hopefully they'll listen to you and up your dose next week 🤞 x

@Owl86 thank you for your support! Means alot!

This is my first period since April too so the cramps and back ache are horrendous and my hormones are all over the place! I will definitely call next week!😊

@Owl86 how are you feeling about things today? Have you managed to look at going private? I'm gutted for you that you seem to have a diabetes specialist 😕 I was looking at a thyroid website earlier for advice on appointments and it said 'If you really feel that you would like a second opinion regarding thyroid disease, it might be a good idea to: Think about changing your GP. Ask for areferral to an endocrinologist who specialises in thyroid disease. Visit aprivate doctor or practitioner.' Fully understand why you're wanting to go private.

@CTMcG blooming heck, I'm gutted for you too. I hope you get a gp appointment next week to sort it out 🤞 arm yourself with all the NICE guidelines!

@CTMcG No worries. Hope all the AF pains ease soon and I'll cross my fingers for you for next week. 😊

@FlyingGiraffe I'm feeling better thanks, mainly as I bit the bullet and booked a private consultation today! It's a Zoom consultation next Tuesday with a very experienced endocrinologist who has a special interest in the thyroid and fertility. I'll report back after, I'll be happy to share details if I have a good experience.

@Owl86 that's amazing news! Let us know how it goes. Definitely be interested in the details if it goes well, you can always pm me if you'd rather not shared publicly. I'll let you know what happens next week for me too 🙂 feels like we've both had progress this week! 🙌

@FlyingGiraffe Yeah, it does feel like we've made some progress this week! 😊 Do let us know how things go on the 15th, I'll be crossing my fingers that the endo rings you and you get good news. Hopefully we'll both have taken some more steps forward by this time next Friday... We will get there in the end! x

Sorry I am only replying now. @owl16 you are making the right decision to move as they don't seem to have a clue.

I was back on with my doctor own doctor yesterday. The one I have been dealing with is new and I've only talked to her on the phone.

Yesterday he told me completely different information from what she had. I was originally told everything was good to normal except my thyroid test. My doctor has now said that the previous doctor has told me the wrong information and I didn't ovulate for the first blood test. He is now saying pcos is a possibility. This was a complete shock as I have had normal, regular periods but always a short cycle. Also clearblue ovulation tests have shown I have. He now wants to repeat bloods on the morning I next get a static smile face to see what has happened.

From their he said I will be referred and possible IVF. I am beyond devastated as it was so different from what I had been told. Now on a strict diet as he said with my current weight I would be refused. He was so matter of fact and cold especially as it was over the phone.

@Owl86 good luck for your private appointment tomorrow! Looking forward to hearing how it goes!

@Sunstar16 sorry your usual gp was unsympathetic sounding. Can I ask, when you last had your blood tests done, did you do them on a particular day? How long are your cycles? I dont think you should be having a blood test to see if you've ovulated on the day you get your static smiley personally. If they're testing for progesterone, they usually say cd21. That's going 7 days after the 'textbook' ovulation day of cd14. So I think you should be going 7 days after your static smiley as the clearblue is testing for lh and estrogen, not progesterone. Hope that makes sense! Hope you get it sorted and are feeling better this week 🙂 x

@FlyingGiraffe Thank you! I'm soooo nervous... I've written a whole page of notes and questions to go through with the consultant so I don't forget to say or ask anything. 😂 I'll report back after of course.

@Sunstar16 I'm so sorry you had an upsetting conversation with your GP on Friday. When in your cycle did you have your last blood test done, and what exactly were they testing for? Like @FlyingGiraffe said, for those with average 28-day cycles, progesterone tests to confirm ovulation are usually done on CD21 - about a week after ovulation was expected to have occured. So I'm not sure why he's suggesting you have your next test done on the day of your static smiley. It'll be too early.

@Owl86 I've written notes as well! Totally curious as to your questions though! Maybe I should think of some! I'm bound to go blank on the day!

@Owl86 All the best for today.

@Owl86 @FlyingGiraffe I had my first bloods done on day 22 as Sunday was day 21. I then had bloods repeated to check my thyroid a month later.

My doctor called me back this morning. It was a public holiday here yesterday and said he wanted to talk over Friday's conversation. He confirmed I didn't ovulate for the day 22 bloods. He is wanting to do my bloods on the day with the static face for progesterone I am then going to book in 7 days from that day to have it repeated to see if ovulation occurred. Today he also referred my DH so we may be getting somewhere. He was so kind today and more positive than on Friday.

@Sunstar16 OK, that makes more sense if you're having bloods done around 7 days after ovulation too. I'm really glad your GP was more pleasant and positive today, and it's good he's referred your DH too.

Thanks for the luck!

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

Pinning this

@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. 😊

@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

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. 😊

@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

@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

@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.