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Conception

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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:
Original poster
Owl86 · 13/07/2021 10:48

@Sunstar16 OK, that makes more sense if you're having bloods done around 7 days after ovulation too. I'm really glad your GP was more pleasant and positive today, and it's good he's referred your DH too.

Thanks for the luck!

OP posts:
Sunstar16 · 13/07/2021 09:56

@Owl86 All the best for today.

@Owl86 @FlyingGiraffe I had my first bloods done on day 22 as Sunday was day 21. I then had bloods repeated to check my thyroid a month later.

My doctor called me back this morning. It was a public holiday here yesterday and said he wanted to talk over Friday's conversation. He confirmed I didn't ovulate for the day 22 bloods. He is wanting to do my bloods on the day with the static face for progesterone I am then going to book in 7 days from that day to have it repeated to see if ovulation occurred. Today he also referred my DH so we may be getting somewhere. He was so kind today and more positive than on Friday.

FlyingGiraffe · 12/07/2021 21:17

@Owl86 I've written notes as well! Totally curious as to your questions though! Maybe I should think of some! I'm bound to go blank on the day!

Original poster
Owl86 · 12/07/2021 20:48

@FlyingGiraffe Thank you! I'm soooo nervous... I've written a whole page of notes and questions to go through with the consultant so I don't forget to say or ask anything. 😂 I'll report back after of course.

@Sunstar16 I'm so sorry you had an upsetting conversation with your GP on Friday. When in your cycle did you have your last blood test done, and what exactly were they testing for? Like @FlyingGiraffe said, for those with average 28-day cycles, progesterone tests to confirm ovulation are usually done on CD21 - about a week after ovulation was expected to have occured. So I'm not sure why he's suggesting you have your next test done on the day of your static smiley. It'll be too early.

OP posts:
FlyingGiraffe · 12/07/2021 18:54

@Owl86 good luck for your private appointment tomorrow! Looking forward to hearing how it goes!

@Sunstar16 sorry your usual gp was unsympathetic sounding. Can I ask, when you last had your blood tests done, did you do them on a particular day? How long are your cycles? I dont think you should be having a blood test to see if you've ovulated on the day you get your static smiley personally. If they're testing for progesterone, they usually say cd21. That's going 7 days after the 'textbook' ovulation day of cd14. So I think you should be going 7 days after your static smiley as the clearblue is testing for lh and estrogen, not progesterone. Hope that makes sense! Hope you get it sorted and are feeling better this week 🙂 x

Sunstar16 · 10/07/2021 11:54

Sorry I am only replying now. @owl16 you are making the right decision to move as they don't seem to have a clue.

I was back on with my doctor own doctor yesterday. The one I have been dealing with is new and I've only talked to her on the phone.

Yesterday he told me completely different information from what she had. I was originally told everything was good to normal except my thyroid test. My doctor has now said that the previous doctor has told me the wrong information and I didn't ovulate for the first blood test. He is now saying pcos is a possibility. This was a complete shock as I have had normal, regular periods but always a short cycle. Also clearblue ovulation tests have shown I have. He now wants to repeat bloods on the morning I next get a static smile face to see what has happened.

From their he said I will be referred and possible IVF. I am beyond devastated as it was so different from what I had been told. Now on a strict diet as he said with my current weight I would be refused. He was so matter of fact and cold especially as it was over the phone.

Original poster
Owl86 · 09/07/2021 23:11

@FlyingGiraffe Yeah, it does feel like we've made some progress this week! 😊 Do let us know how things go on the 15th, I'll be crossing my fingers that the endo rings you and you get good news. Hopefully we'll both have taken some more steps forward by this time next Friday... We will get there in the end! x

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FlyingGiraffe · 09/07/2021 22:32

@Owl86 that's amazing news! Let us know how it goes. Definitely be interested in the details if it goes well, you can always pm me if you'd rather not shared publicly. I'll let you know what happens next week for me too 🙂 feels like we've both had progress this week! 🙌

Original poster
Owl86 · 09/07/2021 22:09

@CTMcG No worries. Hope all the AF pains ease soon and I'll cross my fingers for you for next week. 😊

@FlyingGiraffe I'm feeling better thanks, mainly as I bit the bullet and booked a private consultation today! It's a Zoom consultation next Tuesday with a very experienced endocrinologist who has a special interest in the thyroid and fertility. I'll report back after, I'll be happy to share details if I have a good experience.

OP posts:
FlyingGiraffe · 09/07/2021 21:33

@Owl86 how are you feeling about things today? Have you managed to look at going private? I'm gutted for you that you seem to have a diabetes specialist 😕 I was looking at a thyroid website earlier for advice on appointments and it said 'If you really feel that you would like a second opinion regarding thyroid disease, it might be a good idea to: Think about changing your GP. Ask for areferral to an endocrinologist who specialises in thyroid disease. Visit aprivate doctor or practitioner.' Fully understand why you're wanting to go private.

@CTMcG blooming heck, I'm gutted for you too. I hope you get a gp appointment next week to sort it out 🤞 arm yourself with all the NICE guidelines!

CTMcG · 09/07/2021 16:27

@Owl86 thank you for your support! Means alot!

This is my first period since April too so the cramps and back ache are horrendous and my hormones are all over the place! I will definitely call next week!😊

Original poster
Owl86 · 09/07/2021 16:23

Oh @CTMcG I'm sorry! 😥

The upper limit for "normal" TSH is usually around 4.5 ish (varies a bit from lab to lab). My guess would be that, like me, your TSH is now just below that limit - hence why the report says you're normal and no further action needed.

But as you say, it's definitely still too high for TTC and they can't just leave it there. So stick to your guns and speak to your doctor about it next week.

On the plus side, it's good your TSH has come down a bit - shows the levothyroxine is doing the trick. 😀 It just sounds like you need a higher dose to get it down even further. 25mcg is only the lowest dose.

Hope you feel better soon! It's so tiring, and hormones won't be helping. But your doctor has sounded fairly reasonable so far, so hopefully they'll listen to you and up your dose next week 🤞 x

OP posts:
CTMcG · 09/07/2021 15:21

Hey girls.

So my tsh level has came down from 6.Something to 4.something and receptionist goes 'says no action needed' and i said oh well should i like up my dose cuz thats still too high for ttc and she repeated 'it says no action needed', af finally came today and although i am happy tsh is lower i feel like now ive been fobbed off and im crying! Definitely af and hormone related why its made me cry as its definitely good its came down but now i feel MEH. Will call to get speaking to a doc next week about it as i am not just leaving it there!

Original poster
Owl86 · 08/07/2021 17:20

So my GP surgery has just sent over my latest blood test report and the endocrinologist's advice letter.

My thyroid function results are:

TSH: 4.38 (compared to 4.93 last time)
FT4: 15 (compared to 14.7 last time)

So my TSH is now just within the "normal" range. But it's clearly still too high for TTC/pregnancy, and my FT4 is only fractionally higher than last time.

TPO antibody results still haven't arrived, but I already know I'll be negative thanks to my private test.

The endo's advice letter says "If FT4 low normal with high TSH and positive TPOs, start on Levothyroxine 25mcgs daily, aiming for TSH of 1-3mu/L pre-conception."

Given my TSH has come down into the "normal" range, and I know I won't be positive for antibodies, I'm now pretty certain I'll get nowhere further with my GP when I speak to them next week. So I'm going to start contacting private endos to see if I can book an appointment ASAP.

(Also, I just looked up the endo who advised my GP and it seems they're a Diabetes rather than thyroid specialist - which could maybe explain the slightly odd advice.)

OP posts:
Original poster
Owl86 · 08/07/2021 12:56

@Kiki275 Yeah, it definitely sounds like it's worth discussing with your endocrinologist - particularly in light of your positive antibodies too. Hopefully they'll agree to keep you on the levo after the birth. It would seem very unfair to make you suffer unnecessarily while coping with a newborn. 🤞

@Everythingcrossed2021 Yes, please do keep us posted with how you get on. 😊 It'll be interesting to see what your antibody results are and hear what the gynaecologist says. I should be getting my antibody results next week, but I already know they'll be negative thanks to my recent private home test. It does make me wonder what the reason is for my persistently wonky thyroid as apparently almost all cases of hypothyroidism (subclinical and overt) are down to autoimmune disease/Hashimoto's. And none of the other causes I've read about apply to me. 🤷

OP posts:
Everythingcrossed2021 · 08/07/2021 10:26

Hi everyone. I am following this thread very closely still and will keep you all posted on my progress. I am waiting for my antibodies blood test results so @Owl86 it will be interesting to see what they say about that result and if that sways them in anyway regarding medication. I will also feedback what the gynae says about thyroid when I have my appointment early August. I'm currently in a phase where I want to stop ttc for a couple of months anyway just for a (mental) break but might be wise anyway while all this thyroid stuff is up in the air.

Kiki275 · 08/07/2021 10:13

@Shortmamashortcycles that's reassuring, thank you 😊 x

Kiki275 · 08/07/2021 10:11

@Owl86 to be honest it's partly presumption from what I've read and also they've not made my prescription repeatable as it's just for the duration of pregnancy. It's on my list to discuss with the Endocrinologist next time we have a call. I have absolutely no desire to go cold turkey and return to "normal" levels as an experiment when dealing with a newborn. I have tested positive for antibodies and have family history so it's just a matter of when, rather than if, I fall below subclinical.
Looking at my notes, TSH was 7.83 pre pregnancy, 3.99 on 25mg and 50mg to bring

Shortmamashortcycles · 08/07/2021 10:03

@Kiki275, no-one suggested I should stop levo after my first pregnancy. You may need a blood test c.12 weeks after birth to see if your dose needs adjusting and then an annual check. I'm pregnant with my second and have been merrily taking my 100mcg dose since DD was born with no adjustment - it's the right level for me clearly!

Original poster
Owl86 · 08/07/2021 09:38

@FlyingGiraffe Just rang the surgery again. I spoke to someone else who said that, as I already have an appointment booked for next Friday, I can't speak to another GP today (I thought that might happen!). So I told her I'm considering going private and I'd like to get hold of a copy of the blood report and Advice & Guidance correspondence (both ways) ASAP. She's put in a request and I should receive the documents via email this afternoon - though I won't hold my breath!

If the endo's advice does indeed state that I also need to test positive for antibodies to be prescribed levothyroxine, I'm starting to wonder if there's even any point in waiting for my appointment next week. My GP clearly has limited knowledge of these issues so no doubt they'll want to follow the endo's advice to the letter. So I'm tempted to just forget it and book a private appointment immediately, but I'll wait for the documents to (hopefully) arrive later before deciding. I still wonder if there's been some kind of miscommunication or misunderstanding between the GP and the endo.

@Kiki275 Hi and thanks for sharing your experience, I hope your pregnancy is going well so far. Why do they want to take you off the levothyroxine after the birth? Surely they should let you carry on taking it (albeit maybe at a lower dose) if it's making you feel loads better?

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Kiki275 · 07/07/2021 22:30

@Owl86 sorry just noticed this thread.
I was diagnosed Subclinical following a previous pregnancy. My GP surgery wouldn't consider medicating me, despite my cycles not returning to normal following that pregnancy.
It took longer to conceive than previously and I had to do both OPKs and BBT to work out ovulation. As soon as I did conceive I was immediately started on 25mg LevoThyroxine and referred to an Endocrinologist. He then upped it to 50mg and subsequently up to 75mg in 3rd Trimester.
I'm dreading them taking me off it after the birth as I never realised just how much I tolerated symptom wise before and how much better I feel now.x

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

@ChinChilly I actually decided at the weekend that I'm going to switch surgeries as soon as I've got an answer from my GP (either positive or negative) about the levothyroxine. The surgery I want to register with has much better reviews, and the fact they have some info about the thyroid and pregnancy on their website gives me hope they might know what they're doing!

Fingers crossed you get a speedy referral to the clinic. 🤞

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FlyingGiraffe · 07/07/2021 22:14

@ChinChilly that's terrible. I really don't understand the reluctance to at least even consult a specialist. I guess because its subclinical they might think it doesn't need medicating yet, but the guidelines say to refer if trying to conceive when subclinical so it makes no sense for them to stop that happening. I've seen posts in my local area on facebook asking people which gp practice they recommend. I wonder if you have this around you? Might be worth researching other surgeries around your area in case you do decide to move. Hope the referral is quick for you xx

@Owl86 I think I'd be calling tomorrow too...the fact they wouldnt tell you anything makes it even more intriguing! Hope it goes well 😊

ChinChilly · 07/07/2021 21:38

@Owl86 my GP surgery has always been terrible, I've always said I need to find a new GP and never got round to it, I'm kicking myself now I haven't done it before. Yeah I'm looking forward talking the miscarriage clinic, keeping my fingers crossed the referral doesn't take too long

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

@FlyingGiraffe Well I already have an appointment booked with my GP for next week, by which time my antibody results should be back too. But the receptionist today said I could ring first thing tomorrow to get put on the list for a callback from a GP in the afternoon. So I'm going to try my luck and see what happens... My GP isn't working tomorrow so I'd have to speak to a different GP, but I'd actually welcome the chance to speak to someone else!

Interesting about the 15th, sounds a bit confusing but fingers crossed it's a phone consultation! 😊🤞

@ChinChilly I can completely understand why you're so upset and feel let down. It's really not fair. I can't believe one GP said she knew about the 2.5 limit but wouldn't treat you, and that another just ignored your TSH of 3.9 while pregnant?! I'd love to know the reasons behind these sorts of blasé attitudes, which fly in the face of the NICE guidelines and evidence, as it just makes absolutely no sense to me. I'd be considering a complaint too, and I'll be interested to hear the miscarriage clinic's take on it all. So sorry you're having to go through this.

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