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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:
Ojejku · 04/01/2023 18:06

Songbird50 · 04/01/2023 17:52

Hi @Ojejku welcome, and definitely try not to stress - it sounds like you have a really good and proactive gp which is fantastic! It might take a few months of adjustments to find the best dose but essentially the endocrinologist will probably prescribe levothyroxine to bring your TSH down below 2 just to be safe. Certainly nothing to be terrified about :)

My TSH was 12 and it's now below 2. Whether or not to keep trying while you wait might depend on your age. As I'm 40 my consultant told me to keep trying while we waited for my TSH to come down - it's a case of balancing the pros and cons.

Hope this is reassuring.

@winningeasy thank you for sharing the podcast- I've just spotted that and will check it out!

Thank you for your reply
I am 34 but my biggest concern is that even if I get pregnant (what seems unlikely atm) I might miscarriage from what I understand after reading about subclinical hypothyroidism and then hormones will be even more messed up ☹️

Does anyone know please what could have caused tpo to be above max range? I have 9.7 which seems too low for hashi but then what is wrong? Will levothyroxine bring also tpo down?

Songbird50 · 04/01/2023 17:52

Hi @Ojejku welcome, and definitely try not to stress - it sounds like you have a really good and proactive gp which is fantastic! It might take a few months of adjustments to find the best dose but essentially the endocrinologist will probably prescribe levothyroxine to bring your TSH down below 2 just to be safe. Certainly nothing to be terrified about :)

My TSH was 12 and it's now below 2. Whether or not to keep trying while you wait might depend on your age. As I'm 40 my consultant told me to keep trying while we waited for my TSH to come down - it's a case of balancing the pros and cons.

Hope this is reassuring.

@winningeasy thank you for sharing the podcast- I've just spotted that and will check it out!

Ojejku · 04/01/2023 13:19

Hello ladies,
Hope you do not mind if I join you as I'm really terrified
We were trying to conceive for few months and finally I did blood test. At first standard ferritin, B12 TSH and T4 and when my GP saw TSH level slightly elevated started digging and consulted with the endocrinologists (I quess I am lucky with the GP!) So they sent me for additional test
Atm my TSH is 5.31, T4 12.3 and TPO 9.76 and GP referred me to the endocrinologists (appointment in 2 weeks)
I have been told to stop trying for a baby, until endocrinologists decides what to do? Is that true? ☹️
Recently I noticed super small spotting 2 days before period which I never had so could that be something what thyroid caused?

winningeasy · 22/12/2022 22:54

Thought you might like this podcast podcasts.apple.com/gb/podcast/state-of-mind/id1442195154?i=1000577875541

I have started working with Tanya to bring thyroid down unmedicated / reset metabolism / restore micro biome x

Original poster
Owl86 · 21/12/2022 16:36

Hi @Rosiestraws, I'm sorry to hear this. It's probably worth speaking to your GP again and asking for further details of their conversation with the endocrinologist. E.g. what was the rationale behind their recommendation not to treat with levothyroxine, given you're TTC? How do they propose to deal with the elevated prolactin, which could impact your fertility and be linked to your TSH levels?

If you don't get anywhere, another option is to see an endocrinologist privately for a second opinion. I ended up having to do this myself when my GP also refused to prescribe levothyroxine.

OP posts:
Rosiestraws · 21/12/2022 14:38

Well I've heard back from my Gp who supposedly heard back from the endocrinologist and they said they wont prescribe levothyroxine when my TSH function tests are normal! I don't know how to feel about this.. I feel like it may affect my chances of maintaining a pregnancy in future...and the prolactin is not normal so what about that!? Any thoughts of what I should say or do? :(

Songbird50 · 16/12/2022 15:47

@Rosiestraws I have been meaning to message to say hello & welcome too, it's just been so busy! Hopefully I will get a chance to write more over the holidays.

I am 40 with undetectable amh and also had a miscarriage this year. My cycle still exists but it is unpredictable. My tsh used to be 12 but is now below 2 on levothyroxine. I have some sort of adrenal/thyroid/endocrine/ autoimmune issue(s) which I am still working to get to the bottom of. My mum had a late menopause and that is supposed to be inherited, but she also had a lot of autoimmune illnesses.

You might like to look into getting your dhea-s tested because of your low amh. I did and found out that my dhea-s and testosterone are really really low. I have now been taking dhea for 2 months to hopefully improve egg quality and amh...we will see. There are lots of threads on dhea you can follow. I haven't had any side effects from taking it but that is probably because my level was so so low to begin with. I also don't have high prolactin so you would need to get advice on whether it would affect that.

There is some sort of not yet fully understood link between dhea and the thyroid too:

www.google.com/amp/s/thyroiduk.org/related-conditions/dhea-deficiency/

Rosiestraws · 16/12/2022 11:27

thanks for your reply @Owl86 I've chased up my doctor about the medication and suggested levothyroxine.

I'm sure I'm ovulating as I obviously got pregnant last month and also have ovulation pains/EWCM every month and I have the Mira fertility monitor so I track my hormones etc. I do have issues due to my severely diminished ovarian reserve which means my LH levels can be high at different points in my cycle or I have more than one peak but I'm confident I'm ovulating ok based on this!

Original poster
Owl86 · 14/12/2022 13:51

Hi @Rosiestraws, welcome to the thread. Sorry to hear of your struggles and your chemical pregnancy last month.

Hopefully your doctor will come back with the suggestion of levothyroxine treatment to lower your TSH. You may find this fixes the prolactin issue too, as happened in my case.

If it doesn't, you might want to ask about the possibility you could have a prolactinoma (benign tumour of the pituitary gland). This is another common cause of elevated prolactin and can be treated with medications like Cabergoline. My endocrinologist was going to put me on this, in addition to the levothyroxine, should lowering my TSH not reduce my prolactin levels.

When I first discovered I had subclinical hypothyroidism in spring 2021, my TSH levels were quite similar to yours - usually around the 4-5 mark. It'll be trial and error to find the right levothyroxine dosage for you as everyone responds to the medication differently, even if their initial TSH levels are similar. But if it helps, my starting dose was 50mcg daily - and I was on 50mcg x 5 days and 100mcg x 2 days when I finally fell pregnant over a year later.

I think endocrinologists can differ in how much weight they place on other thyroid function results like FT4. Mine does consider my FT4 levels, but he sees them as secondary to the TSH as he says FT4 measurements are less reliable and more sensitive to interference.

Final thought: Could it be worth asking for another progesterone test at the appropriate time in your cycle (Day 21), to check you're definitely ovulating?

I hope this helps, and good luck! Let us know how you get on.

OP posts:
Rosiestraws · 14/12/2022 10:42

Hi All

I hope you don't mind me joining/asking some questions - it seems people on here often know more than the docs!

So I know I have severely dimished ovarian reserve (I'm just 36 but at just 34 I had AMH tested etc and it was 0.8pmol so who knows how far it's dropped now - better to not know I think!). I also had my TSH level tested when I was about 32 and it was 4.95 - had it tested as period were irregular etc. It has since been tested a few times and was around 3.5 I think. I was freezing my eggs at the time and told it would not have an effect on that, but ought to be under 2.5 for IVF in future. Was also told there's no real data on natural conception with TSH or something along those lines so they wouldnt really recommend any treatment for natural conception.

I got pregnant last month and sadly ended up being a chemical pregnancy/early miscarriage so I've asked for the blood tests to be redone. My TSH was 3.82 - which they claimed was normal but prolactin was 940 and a note was made to check if I could be pregnant (clearly noone paying attention to notes etc as to why these tests were being done anyway!) Progesterone was (day 6) 1 so they said I might not be ovulating. I explained the reason for my tests and the day of my cycle so obviously that was incorrect and they agreed. Dr said she would talk to some colleagues to decide what medication I might need and get back to me. I had been the one to say I know my TSH level should be under around 2 and she agreed.

So... any thoughts/comments/advice? I hadnt realised prolactin was anything linked to TSH etc but I have now seen a few comments about it on here. What dosage are people on? Should I be asking for anything else?

I did have other blood tests too but I'm not sure if any of the other results are relevant? Serum free T4 level is 15.5 if that helps?

Thanks in advance for any guidance.

Original poster
Owl86 · 19/11/2022 22:45

@TunnocksTCake I sympathise about the blood tests! My prolactin was 1086, I think, so not that far off yours. Came down to 800-ish once my TSH started declining, and then eventually fell to around 300/400.

I remember asking my endocrinologist for an explanation of how hypothyroidism/elevated TSH can cause infertility and miscarriage. It was over a year ago so I'll see if I can dig my appointment notes out to jog my memory of what exactly he said. I think I recall him saying that the mechanisms aren't fully known yet, but that elevated TSH may affect general uterine health/conditions and therefore implantation. I'll check.

Personally my hypothyroidism doesn't ever seem to have affected my cycles. They've always been regular and predictable, with a standard 14-day luteal phase and normal oestrogen/LH/progesterone levels when tested. I've occasionally had some luteal phase spotting, but only a day or two right before my period was due - which I think is considered pretty normal anyway.

OP posts:
TunnocksTCake · 19/11/2022 20:08

Thanks @Owl86 that's all very useful info.
I find blood tests incredibly stressful so have low hopes for normal prolactin test conditions... I have been feeling really sore in my left boob lately, similar to when I was breast feeding so I do think it is probably elevated, just not the 1400 that my medichecks showed!

Does anyone know in what way tsh can cause miscarriage? I have found articles explaining that it can affect your cycles and oestrogen/ progesterone levels, making it harder to get pregnant in the first place, but nothing about how it can actually cause miscarriage, if that makes sense? Maybe it's just the lack of progesterone...?
I'm thinking monitoring bbt for a healthy luteal phase may be another way to monitor the tsh affect on my cycles.

Original poster
Owl86 · 18/11/2022 17:48

Hi @NatW2021, hope you're doing OK.

Good idea to ask for another thyroid test - your levels could have changed a fair bit since June.

I don't seem to have Hashimoto's as my antibodies were within normal ranges when I was checked a year ago.

I'm a year older than you and I know what you mean about deciding when to call it a day with TTC naturally. We'd also been "diagnosed" with unexplained infertility and had the same dilemma. It's such a tricky personal decision. xx

OP posts:
Original poster
Owl86 · 18/11/2022 17:28

Hi @TunnocksTCake,

When I had a Medichecks test, my antibodies were 12.9 thyroglobulin (TgAb) and 12.7 thyroid peroxidase (TPOAb). I was told these were considered negative results for autoimmune thyroid disease.

A few months later I had another TPOAb test through the NHS. This came out as <4 and I was told anything under 24 was considered a negative result. (I think the NHS lab used a different test assay from Medichecks, hence the different result.)

I guess the optimal level for thyroid antibodies is as close to zero as possible. But as your results are within the reference ranges given on the Medichecks report (i.e. in the green), it's likely your levels aren't too much to worry about. See what your doctor says.

On the prolactin front, mine was also sky high (over 1000) at one point. It is a very stress-sensitive test, so worth repeating - I was advised to sit/lie down, close my eyes and chill for 20 minutes immediately before the test if possible. (Those finger prick ones aren't nice, are they?!)

But elevated prolactin can actually be caused by hypothyroidism. Mine came right back down to a normal level once my TSH was lowered with levothyroxine. That was a relief, as I was worried I'd have to go on extra medication.

Hope this helps, and good luck! Fingers crossed your doctor is helpful.

OP posts:
TunnocksTCake · 18/11/2022 14:21

Oh also had sky high prolactin but it says that can be elevated due to the stress of taking the test so will redo in a month. It was hard doing the finger prick at home!

TunnocksTCake · 18/11/2022 14:20

Hi everyone, very glad to find this thread. Now we want to ttc for no.2 I got a medichecks and it shows tsh 3.43 and t4 of 13.4 so borderline hypothyroid/ going in that direction. Have just been referred back to dr after having checks by Gynae for heavy periods and bad mood swings pms but at no point have they done my hormone blood work 😫
Will show dr my medichecks and the guidelines and hopefully will get somewhere.
Has anyone seen guidelines for optimal antibodies? Mine are thyroglobulin 17.8 and TPA 14.4 which is in the green but I don't know what's optimal with those?

NatW2021 · 13/11/2022 12:08

@Owl86 Thanks for responding, my last test was June so i might ask for a blood test to check how things are doing.

Do you have Hashimoto? My antibodies are elevated but not massively.

All our tests are normal so we have unexplained infertility. Im 35 in a few weeks and just trying to get the balance of when to call it a day naturally ,x

Original poster
Owl86 · 13/11/2022 12:03

Hi @NatW2021, thank you for the congratulations and I'm sorry you're having a tough time. I can relate to the losing hope, I was really struggling around 18 months too.

My TSH only dropped as low as 0.1 because it had been a bit too high at my previous test, leading to my endocrinologist increasing my dose. But the increase was too much for me, so I ended up overreplaced. My TSH target was actually 1, which my endocrinologist considers ideal for fertility.

I totally understand the desperation, but if I were you I wouldn't increase your dose without medical advice - being overreplaced isn't a good thing either, and your TSH of 1.12 sounds perfect. When was your last test?

Take care and I'll have everything crossed for a positive outcome before much longer xx

OP posts:
NatW2021 · 13/11/2022 11:18

@Owl86 - congratulations so lovelt to see you got your BFP, have been TTC for 18 cycles and losing hope!

My TSH was initially 5.5 in January GP wouldn't treat so i went private and been on levo since then. My last TSH was 1.12 but still not pregnant. I am lm on 100mg.

I noticed you said your TSH was really low when you conceived, did you change your dose for it drop so low?

I have some left over 50mg of levo and wondering if i should up my dose to see if it makes any difference? I am getting desperate now. X

piglet81 · 18/10/2022 16:07

I should have said I’m not a medic but picked up the info from the very helpful HealthUnlocked thyroid forum.

littlegingerone · 18/10/2022 15:34

Thank you for replying

Both times were mid morning but not fasted, I hadn't realised I was meant to do that!

piglet81 · 18/10/2022 15:05

littlegingerone · 18/10/2022 14:02

Hi I just wanted to jump on this thread if that's OK, as there seem to be a lot of experienced well informed people here!
I am currently ttc and dida private thyroid test a couple of months ago after reading about the links to fertility and conceiving.
My TSH was 4.34, just out of the normal range and classed as subclinical hypothyroidism. I went to my gp to ask for medication to lower it, to get it under 2.5 for conceiving. The doctor was really dismissive and was only focused on that they don't treat TSH under 10, he just didn't seem to be listening to or getting the point of that it should be under 2.5 when ttc. He tested me and I got my results back and they have classed it as normal because my TSH was 2.67.
Firstly I'm not sure whether to still push for medication to bring it under 2.5, I feel like this will be difficult to get because it's close to 2.5 now.
Secondly does anyone have any idea what would have caused it to fluctuate like that?

Thanks in advance for any wisdom any of you might have!

What time of day did you have your blood test? TSH is highest first thing in the morning so an early morning test gives the most convincing result if you’re borderline. It should also be done fasting (you can have water) and before taking levothyroxine if applicable (I realise not the case for you).

littlegingerone · 18/10/2022 14:02

Hi I just wanted to jump on this thread if that's OK, as there seem to be a lot of experienced well informed people here!
I am currently ttc and dida private thyroid test a couple of months ago after reading about the links to fertility and conceiving.
My TSH was 4.34, just out of the normal range and classed as subclinical hypothyroidism. I went to my gp to ask for medication to lower it, to get it under 2.5 for conceiving. The doctor was really dismissive and was only focused on that they don't treat TSH under 10, he just didn't seem to be listening to or getting the point of that it should be under 2.5 when ttc. He tested me and I got my results back and they have classed it as normal because my TSH was 2.67.
Firstly I'm not sure whether to still push for medication to bring it under 2.5, I feel like this will be difficult to get because it's close to 2.5 now.
Secondly does anyone have any idea what would have caused it to fluctuate like that?

Thanks in advance for any wisdom any of you might have!

ChinChilly · 27/09/2022 16:27

@Owl86 try not to worry too much at around 8 weeks my TSH was 9 and FT4 was about the same and I wasn’t being treated at all at the time

Original poster
Owl86 · 27/09/2022 14:36

Hi @SimpleStuff27, thanks for the congratulations and sharing your experience. 😊I had my latest blood test yesterday, at 8+2 and exactly 3 weeks after the previous test. I've got the results back already and my TSH has shot up from 1.03 to 4.65, with my FT4 down to 13.1 from 16.3. I'm waiting for my endocrinologist to advise on increasing my dose, but I'm feeling very worried now. At least we've caught it early, I guess.

@Songbird50 So sorry to hear about your loss. 💐Great your cycles are back on track with the Vitex, and wishing you loads of luck for your tests and consultation next month.

OP posts: