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 please could you message me the details of the private thyroid specialist who has helped you? I have been following with interest as am in a similar situation and have hit a dead end with my GP. Thank you x

Hi everyone.
It's been good to hear some updates from you all. @CTMcG so glad all is going well your end!

@FlyingGiraffe sounds like we are in a very similar situation. We're on cycle 12 now, heading into my fertile window. I've been feeling very overwhelmed with it all tbh but a little more positive the last few days as I'm in that good bit of the cycle! My doc now has upped my dosage to 50mg as my last reading was 2.93 and I'll have a blood test in a few weeks to see what difference that has made. We've had all the fertility tests now as it would seem there's nothing wrong, which is obviously good news but also very frustrating. Hoping it's just a time thing, but it's becoming increasingly difficult to be patient!!

I also need to get on to my doc about the medical exemption certificate - they are not very forthcoming with telling us about that are they!

So I had a bit of a shocker with my blood test results today...

Unfortunately my TSH has dropped off a cliff to

Update: Just heard from my endo. He reassured me about my test results and said it's not unusual to accidentally overshoot the mark when you're trying to find the right dose. He advised I reduce my dose to 50mcg x 4 days a week and then get a retest in 3-4 weeks. So we'll see what happens... Guess it just goes to show how everyone reacts differently to levothyroxine.

@Owl86 That's good to hear, your regular tests will enable them to tweak it to just right. What a tightrope we're on! I spoke to him yesterday and he reassured me about my situation too, he's keeping me on the GP's 50mcg 5days and 75mcg 2 days to start with (my starting tsh was at least double your starting point) but he's going to review my test results every 4 weeks too rather than the GP's 8 weeks so should get sorted more quickly. He also reassured me we can start ttc again now that I'm on Levothyroxine 50mcg, as even though TSH is not in range yet it will come down quickly and the studies used 50mcg, I'd held off through worry so this is excellent news.

My pharmacy also gave me the prescription charge exemption form to fill in, I couldn't find any guidance on eligibility for subclinical hypothyroidism but it looks like I need to submit it to my GP for sign off so I'll do that and they can let me know either way. I'll keep you posted :)

Goodness @Owl86, that must have been a shock! It’s so strange that your TSH was reducing slowly but surely, then totally plummeted. It’s good that you were able to speak to your endo so quickly; do you feel reassured? Hoping that everything balances out again for you soon.

@Songbird50 Thank you. Really glad you had your consultation with him last night and have a plan of action. 😊 Good you feel reassured about restarting TTC too, he said exactly the same things to me when he started me on the initial 50mcg daily. The GP did question yesterday why he was asking for tests every 4 weeks instead of 8 weeks, but didn't push the point and acknowledged he's the expert. Do keep us posted on the medical exemption certificate.

@Whataboutye88 Thank you, and yes it was a shock! It's very weird, like you say. The GP was a bit "OMG! Urgent! Panic! Emergency!" when she called about the results yesterday, which rather freaked me out. But I do feel reassured that the endo wasn't really phased and suggested the changes aren't as horrific as they look on paper. Yes, we need to sort it out - but I'm probably not going to die. 🤣 I just hope my thyroid is enjoying the holiday! How are things with you after all that stress you had recently?

Ha, I’m smiling at the thought of your thyroid just having a little rest! It’s never good when your GP is panicking is it? Really shows the benefit of having your endo to consult too as it does seem to be such a fine balancing act.
I’m doing well. I’m still taking 50mcg every day, but I’m a bit concerned that my GP doesn’t want to do any more blood tests for 3 months so I’ve just done a medichecks thyroid function test to keep an eye on things. I’m an absolute wuss so draining the blood out of my fingers was interesting! My husband is away with work for a while now and I think I missed my fertile window this month. Starting to feel impatient and a bit emotional as if my first pregnancy had held I would be due about now.

@Owl86 thank you for crossing your fingers for me! Mine are crossed for all of you too 🤞😊 sorry to hear your GP scared you a little earlier! It sounds like your private endocrinologist is positive about sorting it out quick enough, so that's great! Definitely shows how quickly the levothyroxine can affect things though!

@Everythingcrossed2021 sorry to hear you're in a similar boat in terms of ttc for a while now too. I feel the same around the fertile window! Slightly more positive again. We're going for the every day approach instead of smep now so we'll see what happens! Hopefully this will be a successful cycle for us both! 🤞❤

@Whataboutye88 Sending you a hug. I had a positive test which turned out to be a chemical back in January. I never really got to the point where I felt like it was going to happen, but it still plays on my mind that it would be around now if it had. Hope you're doing ok. This ttc malarkey isnt easy! Xx

I had a good chat with the GP again earlier. I told her what the private endo said and she's happy to go along with his advice. She's going to issue another blood form so I can get tested again in 4 weeks, set up a repeat prescription and get a medical exemption certificate sorted out. (For the certificate, I've got to go up to the surgery to fill in an application form and then she'll sign and send it off for me.)

So here's hoping that reducing to 50mcg x 4 days a week for the next month will get me out of hyper territory and back into range. 🤞 Then we can try again to find that elusive optimal dose and hopefully get it right next time?!

CD5 today and not feeling hopeful about TTC this month in light of this curveball. I know being hyper can mess with ovulation so I'm bracing myself for a potentially weird or dud cycle.

@Whataboutye88 I've had one of those Medichecks home tests too - I'm a total wuss as well so I hated the fingerprick! I'm sorry about your would-be due date. It's completely understandable you'd be emotional about that. How long is your husband away for?

@Owl86 how are you getting on? Any sign of ovulation for you? Are you skipping this month or going to ttc anyway?

Hope everyone else is doing ok. We're in the tww now (which is never two weeks for me!...more like 9 days, if that! 🙄)

Hi @FlyingGiraffe, thanks for asking after me. 😊 I'm CD14 today and I think I ovulated sometime in the last 24 hours - I had my usual CM pattern, so maybe going hyperthyroid hasn't affected things as much as I'd feared. We did decide to TTC this cycle so I'm just starting the TWW now.

I'm currently taking 50mcg levo x 4 days a week and I'll get another blood test in a couple of weeks to see if my levels are back within the normal range. I suspect the endo might put me back on 50mcg daily once I've got the excess out of my system, as that dose seemed to be working well for me initially, but we'll see.

Do you have any idea what's causing your short luteal phases? Sending you strength for the TWW!

@FlyingGiraffe in the tww now too! Trying not to symptom spot but can’t help it. Currently in the pub so definitely not trying to be too good…need to try and not let ttc take over my life!

I’m on 50mg daily now and will be getting my bloods done at the end of the month.

Strength to you in your tww too!

Evening @Owl86 and @Everythingcrossed2021 😊 Nice to have some fellow tww-ers! I'm exactly the same as you @everythingcrossed2021 and trying not to symptom spot! It's too early for that anyway really but I cant help myself either. I'm 4dpo i think so have a bit of a wait yet. I had a little glass of wine with Sunday lunch today. I dont drink very often but, like you say, you cant let it take over your life! Hope you enjoyed the pub! @owl86 I dont know what's causing the short luteal phases. I've noticed it since coming off the pill last year and the GP didnt seem worried about it. I usually spot from 7/8dpo until maybe 10-14dpo so I never know if it's ok or not as I guess its spotting not the proper AF. Still annoying though! Hope you've both had nice weekends! Not looking forward to work in the morning...this weekend went far too fast!

I think I am 8/9 DPO today and so far I’ve had some random watery CM episode and today sharp twingey pains in the left ovary…so hard not to read into them! This will be our 12/13th cycle. We now also have an appointment with our local NHS fertility clinic in December, so if we don’t get a BFP over the next couple of cycles, at least we have that in the diary.

Oh that's good @Everythingcrossed2021 - when did you get referred if you dont mind me asking? We were referred in March, heard in April that they'd received the referral, but nothing since. I've emailed today to see what wait time we're looking at now. I think we might go for private tests if it's a long time still. We're in our 13th cycle now too. I had a fleck of bright red blood and brownish cm this morning so think I'm out already at 5dpo which is so depressing. Its stopped now but I've had this happen before so dont think its implantation bleeding. Hope your twinges were good signs! 🤞🤞🤞

We were referred last month. I was quite surprised how soon we could get an appointment tbh. Where are you based? It really is pot luck with what services are available. I've had all the scans done already too so I'm hoping that the appointment will be lets look at all the evidence we have and they will give us a POA!!

You're not out yet! Really is far too early to tell. I've bought an early response test which I might do tomorrow or wed. I've tried really hard to resist testing early the last few cycles, but this month I'm too impatient!

@FlyingGiraffe At the end of last year I started getting pre-AF spotting too, usually for 2 days before my full flow starts. Just a bit of light pink discharge when I wipe, on and off throughout the day. Sometimes it even stops for 12 hours and then starts up again, just to really mess with my head.

It's super annoying! My GP ran a hormone blood test (hence how I found out about the subclinical hypothyroidism) and I've had a couple of ultrasounds which showed no obvious cause. So unless it's my thyroid, I really don't know what's going on. I might ask the GP whether she thinks it could be cervical ectropion, but I think that would've been picked up at my smear in January.

Hope you get an answer about the fertility clinic wait times soon! And as @Everythingcrossed2021 says, you're not out yet. 😊

How’s your tww going @FlyingGiraffe? I think I’m about 11DPO so caved and did a test - BFN. It wasn’t one of those highly sensitive ones though, but I feel periody now so preparing for that outcome. Gosh this ttc is tough at times. Sending you strength for your final push in your tww!

@Owl86 @Everythingcrossed2021 I'm 8dpo today and still spotting (since 5dpo) so I'm out. I have had this for a week before AF starts properly in previous cycles so I know what it is unfortunately. I haven't ever been scanned and have always been told not to worry about it but it's not good to be bleeding so early. I contacted the hospital regarding my referral and they said they cant advise on a timeline and that they are prioritising on a case by case basis. So I've been in touch with a private fertility clinic about tests and am waiting to hear back. It really is tough isnt it? ☹ I hope yours turns out to be a bfp still though @everythingcrossed2021 xx

@FlyingGiraffe, so sorry to hear about the spotting. I've been getting pre-AF spotting since the end of last year, and my GP sent me for two ultrasounds (abdominal and transvaginal) to investigate. Could you try asking your GP about if they'd be happy to do the same? Would help you rule out some of the more common causes without having to wait for your fertility clinic appointment or go private x

@FlyingGiraffe Sorry, I just realised I told you all that in my previous message which I'd forgotten about... I'm going mad! 😂

Hi all! Hope everyone is doing ok.

I'm also in the TWW - 9dpo today on my third cycle after miscarriage and determined not to test until Sunday at the absolute earliest. Finding it really tough since for both of the two unsuccessful pregnancies I got pregnant the second cycle, but trying to remind myself it's totally normal to take longer than that too (and that it's no bad thing if things are different this time!).

Definitely got the symptom-spotting mania, but my body is making it really difficult since I've had nausea, sore boobs and fatigue every month so far and lots of BFNs - apparently it's fairly common for your symptoms to 'reset' post-miscarriage, but wondering if normalising Thyroid levels has something to do with it too, perhaps impacting other hormone levels?

More positively, 4 weeks after my GP moved me up to 25mcg Thyroxine a day my TSH has dropped to 2.3ish and my FT4 is the highest it's ever been at 15 - hoping it all just stays there 🤞🏻

Good luck for your next steps @FlyingGiraffe and @Everythingcrossed2021, and hope you're back in ideal ranges soon @Owl86

Morning all. Another cycle bites the dust for me over here! Don’t really know how to feel anymore, definitely getting more used to this disappointing result so maybe feeling more numb - not really sure. Everything crossed for the rest of you in your tww!! Onwards and upwards for me into this next cycle. I have my second blood test on the 1st Nov so will be interesting to see if the 50mg has helped things - clearly hasn’t helped things very much this month!

@nellyinthegarden How did you get on this cycle? I'm glad your results have improved since your GP upped you to 25mcg, that's great news. Do you think your GP might be willing to increase your dose bit more, or do you think you've reached their limit?

@FlyingGiraffe Any luck with finding out about private tests?

@Songbird50 Did you manage to get your medical exemption certificate in the end? If so, how long did it take? It's been 3 weeks for me and nothing yet, but I'm probably being a bit impatient.

@Everythingcrossed2021 I'm really sorry you had no luck last cycle, but fingers crossed you get some good news from your second blood test.

No real news here. Around 11DPO today and I feel the same as I always do, so I reckon we'll be starting Cycle 9 at the weekend. Sigh. I turn 35 next month so I think I'll be investigating a private HyCoSy in the new year if we've still had no luck by then.

Got my next blood test next week so I'm really hoping my thyroxine levels have come back down into range after going hyperthyroid!