TTC and subclinical hypothyroidism

@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!

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 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?

@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 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!

@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

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.

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 @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!

Hi everyone.
A little update from me. I have been on 25mg of Levothyroxine for about 6 weeks now and I've just had my bloods results back:
TSH - 2.92 (down from 6.37)
T4 - 15.6 (up from 13. something).

I'm pretty happy with those numbers considering I'm on such a low dosage, but I plan to speak with the doctor next week (can't get an appointment until then!) to discuss hopefully upping it slightly to get that TSH well below 2/2.5.

Hope everyone else is getting on okay. @nellyinthegarden I hope you've managed to speak to your doctor since you messaged to get their advice/approval about upping your dosage.

Me again - got my blood test results, although haven't been able to speak to the GP about them yet.

TSH is 3.48 and FT4 13.5 (improved from 3.94/11.6 a month ago).

So both going in the right direction but very slowly! And both within the normal ranges for general life but not for conception/pregnancy.

So here's the thing - I'm on cycle day 3 at the moment, and wondering whether to try this month or whether to wait until my thyroid numbers look better (and given holidays won't be able to speak to the GP until right in the middle of the fertile window).

What do you think? And would it be mad to increase my dose to 25mcg (currently 12.5) without speaking to my GP first? I'd never normally consider something like that but also don't feel like there's much to lose at this point, since 25mcg is the introductory dose for most....

@Everythingcrossed That's interesting I've been put on a starting dose of 25mcg too for a tsh of 7. I've only been on it a week and a half though..getting so impatient I have to distract myself :D

Hello all,

Like @nellyinthegarden I've been following this thread for a while and am so grateful for the pooling of shared experience.

@owl86 would you be happy to DM me the details of your private endo too?

My story is that I'm right at the start of my ttc journey but, as I'm nearing 40 and it can be a bumpy road, I'm feeling time is of the essence. Due to irregular cycles post pill I recently discovered that I'm subclinical hypothyroid with tsh of 7 and antibodies in the 300s. My GP has started me on 25mcg of levo as I said I was ttc, but doesn't want to re-test again for 8 weeks and has only talked about getting the tsh down to around 4. I'm worried that she is not going to aim below 2.5, and that it's going to take a long time to get there with a starting dose of 25 mcg and >4week gaps between tests. Eager to arm myself with an endo's 2nd opinion if necessary! TIA

Welcome to the club @nellyinthegarden! Likewise, really sorry to hear your experiences but glad to hear it’s been helpful in some way to know that there is something that could be improved that could help things. 12.5mg does seem like a very small amount. I’m on 25mg and will be getting my bloods done next week so will see what impact that has done to my TSH which was at 6.37 last time is was measured. I’ll be interested to hear how your levels have been impacted @FlyingGiraffeas we were put on the same dose (but I can’t remember what your last reading was?).

Very grateful for this little group I gotta say! On to my 11th cycle I think now, so the support from this group is really helpful X

Thanks @Owl86!

12.5 is ridiculously small (I have to break the 25mcg tablets in half!) but at the time I was just so relieved they'd agreed to give me anything on the NHS that I didn't want to push too hard. Unsurprisingly I don't feel any different since I started taking it, but I've also only just got my first period after the last miscarriage so know my body is a bit all over the place at the moment anyway.

Will see how things go later this week but may well ask for your private endo recommendation since we're lucky we could afford to go that route. Are you London / SE based?

Although it's stressful, in a weird way I'm also glad there's 'something wrong' since it's given me something to focus on / try to control. It's definitely made TTC more of a science lesson than I ever thought it would be, but on the plus side I know a whole lot more about how my body works (or should work) than I used to (silver linings??) 🧐