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Conception

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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:
Everythingcrossed2021 · 11/10/2021 13:52

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 · 11/10/2021 13:23

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! 🤞🤞🤞

Everythingcrossed2021 · 10/10/2021 21:10

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.

FlyingGiraffe · 10/10/2021 21:00

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!

Everythingcrossed2021 · 09/10/2021 16:24

@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!

Owl86 · 09/10/2021 14:54

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!

OP posts:
FlyingGiraffe · 09/10/2021 07:26

@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! 🙄)

Owl86 · 30/09/2021 14:57

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?

OP posts:
FlyingGiraffe · 29/09/2021 22:02

@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

Whataboutye88 · 29/09/2021 13:45

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 · 29/09/2021 12:52

@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?

OP posts:
Whataboutye88 · 29/09/2021 11:58

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 · 29/09/2021 11:58

@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 :)

Owl86 · 29/09/2021 11:12

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.

OP posts:
Owl86 · 28/09/2021 20:56

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

Unfortunately my TSH has dropped off a cliff to

OP posts:
Everythingcrossed2021 · 27/09/2021 09:33

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!

Trying1234 · 26/09/2021 21:35

@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

Owl86 · 26/09/2021 17:32

@FlyingGiraffe I've been feeling fine on the new dose, thanks. The only thing I'm a little worried about is my periods. My last period was lighter and shorter than usual, and this period (which just started today) seems to be going the same way. I know levothyroxine can cause menstrual changes so I'm going to mention it to the endocrinologist when I send him my blood results this week. I'll contact my GP tomorrow to see if they've arrived, and ask about the medical exemption certificate while I'm at it. Thanks for letting me know what your friend said!

Sorry you're now on Cycle 13, but it's positive you're looking into fertility testing. I'll have my fingers crossed for you for this month! 🤞

OP posts:
FlyingGiraffe · 25/09/2021 14:11

@CTMcG so pleased the scan went well for you! Xx

FlyingGiraffe · 25/09/2021 14:08

Hi again all!

@Owl86 glad you were able to get your blood tests ok! Let us know when you get your results! Are you feeling ok with the new dosage? Great news that you're now set up for NHS prescriptions. I'm in Wales so we don't actually pay for prescriptions here, but my friend in London mentioned I'd be exempt from paying if I was there (she's been tested for hypothyroidism before because of symptoms and family history) so I think what they've told your husband is true. I dont think it would matter if you're subclinical on not. I imagine they just look at the medication, not the numbers. Hopefully that's the case for you anyway! 🤞

@Songbird50 it sounds like a good thing you went early for your bloods! I'm glad your gp has upped your dose! You should definitely see an improvement with your next bloods now I'd imagine!

No real update here. Just plodding along...I'm on to cycle 13 now of ttc so it's a bit rubbish. We're going to give it one more month and then I've enquired about private fertility tests which DH has agreed to. We could be seen within 3 weeks at the moment. The NHS waiting list seems to be taking forever and I'm not optimistic about being seen anytime soon. In the meantime we're going to try the SMEP again this month so wish us luck! 😂

Owl86 · 25/09/2021 11:26

@Songbird50 Glad you managed to get your bloods done too. Frustrating (and weird?!) that your TSH went up, but it's good your GP has bumped your dose up considerably. Great you've got an appointment with the private endo too! We'll have to compare notes after. 😂 I'll be sending him my blood results when I get them next week.

On a different note, has anyone here been given a medical exemption certificate? My husband picked up my levothyroxine prescription for me the other day, and the pharmacist told him levothyroxine users should have a medical exemption certificate so they don't have to pay for their prescriptions. I had heard about this before, and I'd been meaning to ask my GP surgery about it, but I'm unsure whether those with subclinical hypothyroidism are eligible or not. The guidance I've read online isn't very clear.

OP posts:
Songbird50 · 23/09/2021 16:09

@CTMcG very exciting to hear about the scan :)

@Owl86 and @Whataboutye88 I also managed to get my bloods taken no problem yesterday at the local hospital...in fact I'd been given the request form already so I just decided to go along at 6 weeks rather than 8 weeks to move things along a bit. I'm glad I did as my GP just called and frustratingly my TSH has gone up from 7.87 to 9.66 since starting 25mcg of levo so she's upping my dose to 50mcg Mon-Fri and 75mcg Sat-Sun. She did say she's aiming for a TSH of 2 which was pleasing to hear but she was too nervous to increase the dosing any more than that at the moment in case I go hyperthyroid. I've arranged an appointment with the private endo next week so I'm looking forward to seeing what he thinks, I thought it would be useful to have him in the background if I do get a bfp at any point just in case the GP is slow to refer.

Funnily enough my first home prick test taken about 8 weeks ago before I went to the GP gave a TSH of 12.6 so that might actually have been more accurate than I realised, the 7.87 was from an afternoon venous test before I knew they should really be taken in the morning, so I might actually be heading slowly in the right direction!

Hope everyone else is doing well :)

CTMcG · 23/09/2021 09:58

@Owl86 hello! Glad you had no issues with the bloods, let us know how you get on with results!

I recently moved house 22miles away from previous house so need to get doc changed asap but did get another script of levo before i left!

9 week scan was amazing. Baby went from 3mm at 6 weeks to 22.50mm at 9 weeks! We seen the babys limbs wriggling about which was mad!! Made it alot more real as he/she looks like a baby now! Strong heartbeat so all good so far! 12 week scan is 4th oct (altho as i know i ovulated late i will only be 11+1 at it) xx

Owl86 · 23/09/2021 09:53

Hi everyone, how are we all doing? Any updates?

Just been to the hospital to have my monitoring blood test, 4 weeks after taking 50mcg x 5 days a week and 100mcg x 2 days a week. I was a bit worried I wouldn't be able to have it done due to the national vial shortage, but luckily I had no problems. In fact, the blood clinic was completely and utterly deserted - I was the only one there and usually it's rammed! So I do wonder if the local GPs are ordering fewer blood tests than usual. Hopefully I'll get the results early next week.

My private levothyroxine prescription is about to run out, but I've managed to get a repeat NHS prescription set up so that's a relief.

Also, I'm 13DPO today but I'm 99% sure I'm out for this month. So on to Cycle 8 we go, I reckon...

Hope you're all doing OK, and @CTMcG I hope your 9 week scan went well! 😊

OP posts:
CTMcG · 10/09/2021 15:03

@Owl86 i was measuring exactly 6 weeks at it which was exactly what i expected due to ovulating a week late and i seen a heartbeat and all🥰

Still so surreal tbh! I have booked another private scan for next sunday when i should be 9 weeks then have my nhs 12 week scan on the 4th October.

I think i will be able to relax a bit more after that scan!