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Original poster

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:
ChinChilly · 07/07/2021 20:23

@FlyingGiraffe when I first asked them about it my TSH was 4.4 it has since come down slightly to 3.9 my T4 is also on the low side at about 10. I am considering putting in a complaint, I feel so let down by them and not listened to. One of the three doctors even said she was aware of the evidence about TSH being below 2.5 but wasn't going to treat my thyroid, the other knew I was pregnant and my TSH was at 3.9 and just marked the result as no further action. I am going to wait until I've spoke to the miscarriage clinic and got my facts straight and then I might put a complaint in, even if it stops one more woman having to go through what I have to be heard. My surgery hasn't ever even consulted a endocrinologist about my TSH.

FlyingGiraffe · 07/07/2021 20:05

@ChinChilly I'm so sorry your surgery has been so bad. I don't blame you for being upset. It might be worth saying something to them once you've spoken to the recurrent miscarriage unit if they suggest you treating your thyroid. It obviously wont change what's happened to you, but if it helped prevent them being so dismissive in future and understanding the link between thyroid & fertility it's worth telling them. What was your tsh again? Mine was 4.31 at the end of June and the endocrinologist has responded by saying that they agree that I need to be reviewed.

@CTMcG it sounds like you were super lucky with your gp!! Let us know how your results are on friday?

@Owl86 when are you speaking to the gp? Do you have to ring to book an appointment again? Hope you get answers soon! My gp said I should have my phone by me on the 15th?! She thinks it's going to be a phone consultation but there's no time mentioned and I've had a letter tonight but theres no mention of the 15th on it?! It just says that having reviewed the info provided, that the clinician has agreed I need to be reviewed by the team. Bizarre! But good..it gives me hope that they think something isnt quite right - so fingers crossed they can help!! 🤞😊

Rainin · 07/07/2021 19:09

Hi Op,

I am subclinical too and during my previous pregnancy they put me on medication to keep my TSH under 2. So the GP doesn't really know what he is saying, understandably, as they are not specialists.

Original poster
Owl86 · 07/07/2021 19:01

Hi @Sunstar16, glad you got you results back. Interesting that your TSH has come down a bit, but your T4 sounds like it's on the low side. Will you speak to a GP on Friday?

I also rang my GP surgery today, to see if my repeat blood test results were back. The receptionist confirmed they'd arrived, but said there's a note on the system saying a GP needs to discuss them with me. That's usually code for "There's a problem", so I'm guessing my TSH was abnormal again. I asked if she could share more details, but she just said I'll need to speak to my GP.

I'm hoping this means I'm now one step closer to a levothyroxine prescription, but I still think there'll be more fighting ahead!

OP posts:
Sunstar16 · 07/07/2021 16:09

I have just been on with my doctor's surgery. I have to call back on Friday if I want to speak to a doctor but the receptionist said my results came back at 2.72 and 12.7.

Original poster
Owl86 · 06/07/2021 22:15

Hi @Whataboutye88, just realised I never replied to your post a few days ago!

I'm really sorry to hear about your MCs. 💐 Seems to be a bit of a theme in this thread sadly. I fully agree it's ridiculous that women often have to go through multiple MCs in a row before even being able to get a simple blood test to rule out some possible causes.

At 2.73, your TSH is still above the commonly recommended max limit of 2.5 for TTC. In fact, some advise it should really be under 2 and ideally closer to 1.

So I suppose it depends how you feel about delaying TTC vs. the possible risks of continuing. My DH and I are postponing till my TSH is sorted out, as per the NICE guidelines, but it's a personal decision. I'm nearly 35, first time TTC too, and I can completely relate to the feeling that time isn't on your side.

How long do you have to wait to see the endocrinologist?

OP posts:
ChinChilly · 06/07/2021 21:54

@Owl86 I think delaying probably is the best, i think some people manage pregnancy and high TSH well but it is a risk factor. At the moment I'm happy to hold off TTC as the thought of being pregnant again terrifies me at the moment but I was warned the waiting list is around 10 weeks so I'm not sure how I will feel by then!

Sunstar16 · 06/07/2021 21:35

I will @Owl86. Good luck for tomorrow.

Original poster
Owl86 · 06/07/2021 21:22

@FlyingGiraffe Brilliant news that the endocrinologist has responded already, things sounds much more efficient where you are! Bit weird that all it says is a date though?! 🤣 Hope you find out tomorrow what that's about! Great that they said they'd write you a referral letter too. If I ask mine for one I'll clearly be waiting 58 years, so if I go private I'll definitely need to find someone who will accept patients without referrals.

@CTMcG Great that you got your 6 week bloods done today, fingers firmly crossed your TSH is on the descent. 🤞 Keep us posted. I have no idea why there's such resistance among GPs when it comes to prescribing levothyroxine. It's a safe (when correctly dosed) and cheap drug that could really make a big difference to those with thyroid issues who are TTC/pregnant. 🤷

@ChinChilly I'm so very sorry to hear you've had another MC. 💐 It makes me mad that they didn't take you seriously enough before, but I really hope you manage to get somewhere with the recurrent miscarriage clinic. It does seem like delaying TTC might be for the best, frustrating as it is. Wishing you lots of luck.

@Sunstar16 Hi! Sounds like you're in a similar position to me. I had my thyroid function checked in May and my TSH was 4.93. I just had repeat bloods done early yesterday so I'm going to call tomorrow to see if the results are back. Let us know how you go tomorrow.

OP posts:
ChinChilly · 06/07/2021 20:39

@FlyingGiraffe sometimes I feel really angry at my GP surgery and how dismissive they are and I do wonder if all this could have been avoided, I've raised my TSH levels and TTC 3 times and everytime I'm fobbed off. I'm not sure I'll ever enjoy a pregnancy, I've been referred to Tommy's in Birmingham, I've heard good things about them so hopefully they will be more proactive.

CTMcG · 06/07/2021 20:28

@FlyingGiraffe just the lowest dosage so far - 25mg. I rang doc about 8 weeks ago asking for bloods to be done as start of the year, my doc advised to get it checked when i start ttc. 6 weeks ago I found out i subclinical hypo, tsh level was 6. Doc said as i was only starting ttc i could see how i get on or i could start levo so i asked for a script and that was it! Sounds like i was really lucky with my doc!

FlyingGiraffe · 06/07/2021 20:25

@ChinChilly ❤ I'm so sorry you've had to go through such an awful experience. I feel so sad thinking of you and the fact that you raised concerns about your tsh and previous mc's, and you were still dismissed. I hope that you have answers soon. It feels like weeks just pass waiting for answers but I think it's worth the wait as I cant imagine how worried you must be for future pregnancies now. If they can give you answers and solutions I imagine it would help a lot ❤ keep in touch with how you get on xx

@CTMcG what dosage of levothyroxine did you go on if you dont mind me asking? Did you get yours through the gp or private? My gp seems reluctant until shes spoken to an endocrinologist. I have my doubts as to whether she'll prescribe medication even though she's asked for their advice 🤷🏻‍♀️

Sunstar16 · 06/07/2021 20:17

Hi can I join this thread. I came off the pill last January and we started to try for a baby last April. I got bloods taken in May and the doctor called me to say my thyroid test was 4.5 and had to be repeated. This was done on Friday and I need to call back tomorrow to find out the results. It has been extremely frustrating that I have not been able to see a doctor, only nurses and have not been given the chance to ask questions so I am so glad I have came across this thread.

ChinChilly · 06/07/2021 20:07

Hi again, I posted on here a while ago about banging my head against the GPs brick wall about thyroid function and TTC, I just wanted to say as difficult as delaying TTC until your thyroid is addressed is definitely a good idea. I had another MC, a MMC this time obviously I don't know for sure that my thyroid caused it but it definitely could of been a contributing factor. The consultant i saw at the hospital actually suggested we didn't TTC until we had been seen by the recurrent miscarriage clinic and had all the checks, I'm hoping they will take my TSH levels more seriously.

CTMcG · 06/07/2021 20:05

Hi Ladies!

Just a wee check in with me! Got my bloods done today after 6 weeks on levo, calling on Friday for results between 2-4pm so fingers crossed I am well under 6 that i was 6-7 weeks ago!

Will keep you updated! @Owl86 i was talking to a girl on a fbook ttc page and her doc keeps fobbing her off going on levo! Why are so many docs arseholes about writing a script for it?! X

FlyingGiraffe · 06/07/2021 19:30

@Owl86 I spoke to the surgery today and it just so happened that they had a response from the endocrinologist this afternoon, but all it said was a date...so I'm waiting on them finding out what that's for! They think its maybe for a phone consultation. They also said they'll help me with a gp referral if I decide to go private still. So a little bit of progress today 🙌😊

FlyingGiraffe · 05/07/2021 21:51

@Owl86 Dont be daft! Your mad ramblings are great! 😂 that's a good idea about asking for the correspondence to double check the actual wording used both ways!

Ah it's your third cycle delaying?! That sucks. I know it's not long in the grand scheme but time just seems to tick on waiting for answers. Brilliant you had no spotting. I would love to see if mine improved if my thyroid was controlled better.

I'll let you know tomorrow! I don't expect them to have anything but maybe I'll be pleasantly surprised! 🤞😁

Original poster
Owl86 · 05/07/2021 21:31

Hi @FlyingGiraffe! No need to apologise, it's good to take a break from these things (including my mad ramblings 🤣).

Yeah, I got my bloods done first thing this morning... I expect my thyroid function results will be available in few days, but because the antibody results will take longer to come back I'm not actually booked to speak to my GP until the end of next week.

I still can't find anything to suggest that you need positive antibodies to go onto levothyroxine when TTC. It seems very odd to me, so when I ring for my thyroid function results later this week I'm tempted to also ask for copies of the correspondence between my GP and Endocrinology so I can see exactly what was said both ways. 🤔

AF arrived yesterday so I'm into my third cycle of delaying TTC now. On the plus side, it's nice not to have deal with the anxiety of the TWW! Interestingly, I had no spotting in the days before AF this time. Think that's the first time in about 6 months. I don't even know if the spotting has anything to do with my thyroid or not, though.

Good luck if you call your GP tomorrow! If it's been a week, I think it's a reasonable time to ask if anything's come through from Endocrinology yet. It'll be really interesting to hear what the advice is compared to mine. Let me know how you go! 😊

OP posts:
FlyingGiraffe · 05/07/2021 20:01

@Owl86 I'm so sorry for not replying til now. Some days I feel like I need to try not to obsess so much! #whoamikidding Did you get your bloods done today? It seems very strange that the endocrinologist has said that about the antibodies as nothing I've read suggests needing both to go onto thyroxine either. Let's hope the Gp listens to you when you get your results 🤞 that should be later this week no? Your doctors surgery sound like they're not too fun to deal with by the way! You've battled with them about the endocrinologist letter so many times already! Glad they rang and apologised! I chickened out of calling! I might ask tomorrow as itll be over a week then. I've found someone who does private appointments without a gp referral which I think I might be needing at this rate! So if I hit a brick wall with the gp that's my next step 🙃

Original poster
Owl86 · 02/07/2021 11:16

So, an update...

My GP surgery rang early this morning. Apparently they gave me incorrect info yesterday. The endo said I should have my bloods redone 6 weeks after my last test, not 6 weeks from now. As it's already been 7 weeks, I'm going to go down to the blood clinic early on Monday morning - I've read TSH is usually highest first thing before you've eaten.

The endo has also advised I should have an antibody test (TPO) to check for Hashimoto's disease, so I'll be having that done too. Thyroid antibody results can take longer to arrive than the standard thyroid function results, so I'm booked in for a phone appointment with my GP in a fortnight to discuss next steps once everything's come through.

So this all sounds a little more hopeful than yesterday.

But... I'm still a bit worried and confused. Apparently the endo has advised my GP to prescribe levothyroxine if I get similar results to last time AND test positive for antibodies. I'm actually already 99% sure I won't test positive for antibodies, as recent Medichecks thyroid test showed I didn't have them.

I've not found anything during my research that suggests women with subclinical hypothyroidism who are TTC should only be prescribed levo if positive for antibodies. The NICE guidelines and BTF guidance certainly don't say that. I do think I read that having antibodies can further increase the risks of complications, but I'm sure raised TSH and low T4 is reason enough to prescribe. So this all seems a bit bizarre to me.

My plan is to get the bloods done Monday and then gather lots of evidence that I should be prescribed levo even if I test negative for antibodies. If I still have no luck persuading my GP when we discuss the results in a few weeks, then that's definitely the point at which I'll be going private. I'm going to start researching endos now, just in case.

(Also, the endo said I only needed to get my TSH under 3, which is higher than the 2.5 I've read everywhere. But there's no point thinking about that now - I just need to get a prescription first!)

OP posts:
ehb102 · 01/07/2021 22:27

Hello.

I'm late to the thread but I have some experience to share that may be of use.
(1) Hashimoto's sufferers do better on a very low TSH. At 0.4 or 0.5 I'm normal. 0.6-0.7 I am not quite right. 0.8+ I'm going to sleep waaaay too early. 1.5 and I might as well not be taking the drugs. There is a peer reviewed paper on this somewhere, forgive me if I don't search it out.
(2) Mary Shomon is the thyroid patient advocate you need. I got my best pregnancy advice from her pages. Because of her I got a TSH test the minute I confirmed pregnancy. Yes, baby was already sucking that thyroxine out of me. I had blood tests every two weeks to check if my levels were changing. And at 20 weeks they did. Baby started making their own thyroxine and I was suddenly over medicated.
(3) Post Partum thyroiditis is a thing. I happened to have a blood test drive days after birth and whoosh! It was up. Took me months to get that back to normal.
(4) Diet can play with the absorption of your thyroxine but hard exercise certainly can. Exercise makes you absorb more thyroxine, so you can get a suppressed TSH. I had marvellous parathesia in January when I went back to training twice a week.
(4) Resistance training was the key to really good health for me. I can diet rigidly, but it's lifting the big weights that changed my body enough that I could conceive. Not sure why, but I was super fit and my blood sugar was awesome, despite me being enormous.

Good luck, all of you. I'm afraid the NHS knows very little about managing the condition apart from chucking levothyroxine at you. Oh, and I got to the stage I was halving 25mg to get the correct dose.

Whataboutye88 · 01/07/2021 18:28

I’m so glad I have come across this thread, but also sad to hear how hard some of you have had to push to be taken seriously and get tests/treatment.
You all seem so clued up I wonder if I could ask for some advice, as I’m not sure whether to put off TTC this month. I’ve had two early miscarriages this year, one at 7 weeks in March and one at five weeks in May. My GP wouldn’t run any tests until three miscarriages in a row (which seems bloody unfair in itself given that there are causes that can be easily ruled out with a blood test), so I went to private fertility clinic. Luckily all scans were normal, but my TSH came back at 5.73. The clinic prescribed me 50mg of Thyroxine and asked for me to get my GP to repeat the TSH and also thyroid antibodies before I started taking them, and again after six weeks. Was three weeks wait so got them done privately too, and in two weeks from 10th June to 23rd of June my TSH had reduced to 2.73. TPO came back at off the scale - almost 400. The GP has said they’ll refer me to an endocrinologist as she suspects possible Hashmitos (despite the normal second TSH reading). But in the meantime I’m wondering if I can TTC now my level is more normal? My first test was done only 2-3 weeks after I miscarried, and I’m wondering if the pregnancy caused my TSH to rocket and it was still falling then? The fertility clinic recommended that I up my dose to 75mg as soon as I get a positive test, to take progesterone pessaries and high dose folic acid, but I just feel so nervous about possibly being pregnant before seeing the endocrinologist in case I need ongoing blood tests or more treatment to manage what is obviously a bit of a wonky/confused thyroid. I’m almost 34 and it’s my first time TTC, so I don’t feel time is on my side. Any advice very gratefully received 🙂

Original poster
Owl86 · 01/07/2021 18:02

@Everythingcrossed2021 Thank you so much for your understanding. Yeah, I think about it all the time too so you're not alone on that. It's hard, isn't it? I'm also going through a really stressful time for other reasons right now, so trying to deal with this on top is a bit overwhelming.

Anyway... Like you say, I'm going to let myself be angry and upset today, and then tomorrow it's time to dust myself off and come up with a Plan B. I will not be beaten!

@FlyingGiraffe Just realised I didn't reply to your last message. Did you have any luck finding out how long you can expect to wait for a reply from Endocrinology? I'm glad AF showed up in the end, though 8 days of spotting can't have been much fun. 😞

OP posts:
Everythingcrossed2021 · 01/07/2021 17:23

@Owl86 Sorry I’ve only just read your other message about the day you have had - I’m so sorry you don’t feel like you are being listened to. I can totally relate - it’s beyond frustrating and tiring and consuming. Some days/weeks it can feel like that’s all I’m thinking about. Be angry today, let it all out and then like you say start thinking about a plan B when you’re head is a bit clearer.

Keep us posted!

Original poster
Owl86 · 01/07/2021 17:22

@Everythingcrossed2021 Hypothyroidism symptoms are so non-specific that it's hard to tell if I have them or not! I can definitely put a tick against some of the signs on the list, but they could easily be caused by other things.

Gosh, that must have been a shock about the subseptate uterus. But I'm glad you've got a gynae appointment so quickly. 😊 Fingers crossed for you and do keep us posted with how you get on!

OP posts:
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