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. :)

@Everythingcrossed2021 That seems like a very good result for only 25mcg with a starting TSH of over 6! Fingers crossed your GP will agree to up your dose to get it down well below 2. Let us know how you go.

It's been 2 weeks since I started my increased dose of 50mcg x 5 days a week and 100mcg x 2 days a week. My next blood test is in a fortnight, so I'll see what my TSH is doing then. Hoping it'll be nearer my endo's ideal target of 1 this time.

@nellyinthegarden Did you manage to speak to your GP about increasing your dose? And @FlyingGiraffe, how did you get on with your recent blood test? Hope you're feeling much better now x

Hi @Owl86 thanks for thinking of me! I'm feeling a lot better thank you! 😊 my blood test result was shockingly good! Down from 4.31 to 1.65! I'm thrilled the medication has worked so fast. I feel so much more energetic too. Hopefully we'll be able to actually ttc this month! Last month was a write off! 😂 Sounds like you're getting on really well with your private endocrinologist! So pleased for you!

@Everythingcrossed2021 so pleased your tsh is going in the right direction! Hope the gp is responsive next week! 🤞 let us know!

@FlyingGiraffe That's fantastic news, and on only 25mcg too! Really pleased for you. It's so interesting to see how we all respond to the levothyroxine differently.

I'm glad you feel more energetic as well. I can't say I've noticed anything different myself, but then I didn't really think I felt particularly tired or had any other symptoms before I started taking it. I'm just happy not to have side effects. 😂

And thank you, I am indeed getting on well with my private endo and my GP is being cooperative with the blood tests and prescriptions which is good. Hoping my next blood test will show I'm now on the optimal dose for me.

Good luck TTC this month! 🤞 We'll be trying too. Cycle 7 for us.

Well a little update from me, and unfortunately not such positive news. I called my GP today to arrange a repeat prescription of thyroxine (I’ve been on 50mcg for almost three months and my TSH has reduced from 5.71 to 2.06, so it’s clearly working). They’ve refused to prescribe it because my TSH is now normal. I’m absolutely gutted, and frightened, because I only have 7 tablets left and there is a small chance I could be pregnant this month - I’m due in a week. The original prescription came from a private fertility doctor, and she told me to up my dosage to 75mcg from the moment I got a positive test. But the GP has apparently asked for advice from an endocrinologist, who is probably unaware of my history of miscarriage, and has said to not prescribe it to me. So I’m totally stuck. Should I just pay yet more money to see a private endocrinologist? But then my GP won’t book the follow up blood tests/ repeat prescriptions that I need, and I’ll just be caught in a vicious cycle of being refused ongoing medication.

My TPO anti-bodies have been almost 400 both times I’ve been tested, so there is a high chance I have Hashimoto’s too, but GP hasn’t even mentioned this to me.

I’m so frightened and stressed that if I am pregnant I can’t get the thyroxine and I’ll miscarry again.

Hi @Whataboutye88, I'm sorry you're going through this stressful situation. What a weird stance for the GP to take - your TSH is clearly only normal because you're taking the levothyroxine!

A few thoughts and questions from me:

1. Could you go back to your private fertility doctor to ask if they'll issue another private prescription to tide you over while you try and sort this out with the NHS?

1. If your GP asked for the endocrinologist's advice via the Advice & Guidance system, could you ask for a copy of the communication? (I successfully did this in my case, as I wanted to see exactly what the endocrinologist said to my GP.)

1. Did your GP say what you should do (and how they would handle it) in the event you get a positive pregnancy test?

1. What happened to that endocrinology referral you previously mentioned?

Hi @Owl86, thanks so much for your message. I’m feeling so stressed that I’m struggling to think clearly so your questions are all helpful in terms of planning what I do next. I’m just shocked that this is the GP’s stance. I haven’t actually been able to speak to the GP, so this news was delivered by the receptionist! I said that there is a chance I could be pregnant and that this medication is essential for me, so she has asked the GP to call me tomorrow.

1. Yes I think I will email the fertility doctor tomorrow to see if they will write me another prescription. If they do, it will reduce the immediate panic I’m feeling. It will be money well spent.

1. I think it was through a system like this. I asked to be emailed a copy of the correspondence, to which she said she had to get the doctor’s approval. Did you find seeing the communication between the endo/GP useful?

1. A great question I will ask tomorrow. The fertility doctor said I needed to increase my dose by 25mcg as soon as I get a positive result.

1. Absolutely nothing. In fact now I’m questioning if the GP said they would refer me, or that they would check their advice. I’m in Northern Ireland where the waiting lists are dire, so I thought it was possibly just taking a while.

It also seems that because my initial tests and prescription came from a private clinic in England the GP can’t assimilate the private results with their own. It honestly wouldn’t surprise me if the query to the endo was ‘patient has TSH of 2.06, should I continue Levothyroxine’ without any of the background. So anxious, I thought it was all sorted and it’s been ripped away.

Hi @Whataboutye88, no problem at all and I'm glad the questions were helpful.

It's great you've got a phone appointment with the GP tomorrow as you might be able to make some headway when you talk to them. I'd definitely also contact your fertility doctor ASAP to see if another private prescription is possible. If they say yes, you'll have alleviated the immediate pressure and worry. They might also be able to give you some advice about how to handle things with your GP.

When you speak to the GP, this is what I'd do (just my suggestions of course!):

1. Refer to the NICE guidelines for women with subclinical hypothyroidism who are pre-conception or pregnant: cks.nice.org.uk/topics/hypothyroidism/management/preconception-or-pregnant/

1. In light of the NICE guidelines, ask for their rationale for taking you off the levothyroxine (particularly given it's clearly working!).

1. Also in light of the NICE guidelines, ask how they would handle your case were you to get pregnant.

1. Push again for an endocrinology referral given you also have raised antibodies. Like you say, that could indicate Hashimoto's which is linked with miscarriage.

1. Ask to see the correspondence between the GP and the endocrinologist.

On the last point, I asked for a copy of the electronic messages both ways between my GP and the endocrinologist. They only shared the endocrinologist's message (I think it was a mistake rather than them not wanting to), but I did find it useful in that I could see I wasn't going to get anywhere fast on the NHS. The advice was only a few sentences long, and I suspect the GP didn't give them much background context.

I'll have my fingers crossed for you tomorrow. Don't be afraid to be assertive - it doesn't come naturally to me at all, but sometimes it's the only way to get anywhere. Let them know how this is affecting you mentally too, in terms of having already gone through several miscarriages and your anxiety about having another.

Lastly, I bet it's hard but try not to panic. Hopefully this'll all be sorted out very soon one way or the other. Let us know how you get on tomorrow x

@Owl86 I really can’t thank you enough for your advice. I feel much calmer and more prepared for my appointment tomorrow now I have a list of questions to ask, which highlight that their approach seems to conflict with the guidance from NICE and the British thyroid association. I’ve written down all the dates of my private appointments and results so I can easily refer to them too. It’s not in my nature to be assertive either, but I really feel that I need to advocate for myself in this situation. I’m going to get in touch with my private fertility doctor first thing tomorrow too, although I’m not sure if they would prescribe without re-running blood tests (which would be fine if I were in England, not NI).
This thread has been such a help and support - I’m so grateful to you for starting it and sharing your experience and knowledge. Thank you x

@Owl86 Just thought I’d update after all your kind advice yesterday. My GP called and as I partly suspected, there was miscommunication between the practice and the endocrinologist because only my NHS blood test results (where my TSH was normal) were sent. So they didn’t know I’d already been taking levothyroxine for 6 weeks at the time those bloods were taken. My GP is going to prescribe me another three months’ at 50mcg, and call me on Friday to discuss when I should have a repeat test. The request to the endocrinologist was made for advice rather than a referral, but if I get pregnant they will refer me so my levels can be monitored more closely. To say I feel relieved is an understatement!

@Whataboutye88 Oh, that's brilliant news - what a relief! 😊 I did think the whole situation sounded completely bizarre and that there might have been a mistake somewhere... Really pleased for you. And you're welcome re: the advice, glad to have helped in some small way.

On another note, I've just been reading the latest news about the national blood test vial shortage. My next monitoring test is due in 2 weeks so I'm wondering if this might be delayed now. Think I must have got my last test done just in the knick of time!

@whataboutye88 That's fantastic news! I'm new to all this and no doubt have all these hiccups to come so couldn't offer any advice, but I'm so relieved for you. I guess one advantage of the long half life of levothyroxine is although it feels like at age for it feed through to the blood tests I guess it also takes a while to leave our systems so we have a little emergency grace period if needed to sort out supply blips like this. Happily you didn't run out of pills and need it anyway :)

@Owl86 I glued to the national blood vial news too! :D

@everythingcrossed2021 @FlyingGiraffe Super results! Giving me more faith in my starter dose of 25 mcg

@Owl86 yes I’ve been watching the news about the vial shortage with interest/worry too. Hopefully there isn’t any delay to your tests - has your endo asked for checks every 4-6 weeks?

@Songbird50 thank you, I really do feel relieved. How are you getting on with your levothyroxine? 25mcg does seem low for a TSH of 7, but it’s reassuring that other people are getting really good results with the same dose. I suppose it all depends so much on how our bodies respond to it. Did you decide whether or not to have a consultation with a private endo in the end?

@Owl86 Slightly worrying, isn't it? I get my blood tests done at the walk-in clinic at the local hospital, and there's nothing about the shortage on the hospital website. Nothing on my GP surgery's website either. Guess we'll have to cross our fingers and see how things play out.

@Whataboutye88 My endo tells me to get retested every 4 weeks. I doubt there'll be much harm if I have to wait 6 weeks, as that seems to be the standard interval anyway. But from what I'm reading it seems this shortage could continue for months, so not sure what will happen in that scenario! My TSH was already fairly close to the target of 1 at my last test, so I'm keen to make sure I haven't overshot the goal posts having had my weekly dose increased by 30% (though I expect I'll get symptoms if I become hyperthyroid).

@Songbird50 Oops, accidentally tagged myself instead of you! I blame the heat... 😂

Catching up on this thread and was getting stressed just reading about your experience @Whataboutye88 - so so glad it's sorted out!

I managed to speak to my GP on Monday, and they begrudgingly agreed to increase my dose to 25mcg and write me a new, longer prescription which is good. All the stories about others on here getting great results on 25mcg also helping me feel much more positive (thanks @Everythingcrossed2021 and @FlyingGiraffe ).

They'll re-test my levels in 8 weeks (no mention of the vial shortage!), but the GP was very cagey about what I should do if I get pregnant before then, saying I'd need to be referred to a consultant (via midwives) at that stage to manage my levels. I get the impression the GP just didn't have a clue what the guidance was and didn't want to be on the hook for recommending something outside his area of expertise, which I guess is fair enough but also makes things much more stressful for the patient...

@Owl86 sounds like you're doing great I've been keeping the details of the private endo you recommended to hand, whenever I'm worried about what the GP will or won't do next. Feels like a good insurance policy, especially since you've had such success.

@Owl86 Hey missus! Hope you are doing well!

I got got my blood results back from upping dose to 75mg after finding out i was pregnant nearly a month ago. 8 weeks pregnant this Sunday and TSH level has come down to 1.76! I am over the moon! Was sitting at 6.5 back in May! Was honestly expecting it to have went higher again!

@nellyinthegarden Glad your dose has been increased to 25mcg, fingers crossed for 8 weeks' time! It does all sound a bit stressful dealing with your GP, but you've got the private endo details in your back pocket if needed. 😊

@CTMcG Hello! I'm all good thanks, and sounds like you are too! That's brilliant about the TSH of 1.76, I'm so pleased everything is going smoothly for you after that stressful start. How did your early scan go and how are you feeling?

@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!

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! 😊

@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

@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 :)

@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.

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! 😂

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

@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! 🤞