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. :)

@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

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?

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!

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.

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

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.

@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.

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.

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.

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!

@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/

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? :(

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.

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

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?

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?

Advice needed ladies!

Do you know what is a normal non-medicated TSH for pregnancy? Does it go up? What is the safe / unsafe level?

I am kind of shitting it. Bit of a backstory, I have slightly elevated TSH, around 3/4ish, so subclinical. It took us ages to get pregnant with our first child. After persuading a doc to prescribe Levo, I got pregnant the first month taking it.
Then was on it for the remainder of my pregnancy.
We started trying ages a couple of months ago, and was following a nutritional plan from a nutritionist specialising in thyroid issues, was getting 2.5ish levels without Levo, so have stayed off of it. Have just found out I am pregnant again, obv great, and then have had levels tested and TSH is 4.36. I am so worried this is going to cause me to miscarry, do I need to be demanding they re prescribe Levo? My doctors are bad, it's so hard to get hold of someone and get a proper appointment. I constantly have to re explain quite a complicated situation.

I am eating so healthy, regulating my blood sugar, improving micro biome, reducing inflammation.... so there's not much more I can do personally to bring it down.

Any help and advice appreciated!

X

Hi! Maybe you should seek advice from private doctor if your GP refuses to prescribe levo? I think TSH should be below 3 if you are pregnant as it goes up during pregnancy

May I ask what was your dosage when you felt pregnant for the first time? I have subclinical hypothyroidism with TSH around 5 and finally got prescription for levo but my starting dose is 0.25 and I am worried it won't make any difference 🙄

Hi @winningeasy, congratulations on your pregnancy! 😊

TSH should be below 2 or 2.5 in the first trimester. Mine was 0.1 when I got pregnant (I was on levothyroxine) but it suddenly shot up to 4.6 at around 8 weeks. So I ended up doubling my dose on the advice of both my private endocrinologist and an NHS consultant obstetrician. My TSH has been very stable since (around 1.3) and I'm now 25 weeks.

I'd definitely try and speak to your doctor about it. Failing that, your midwife at your booking appointment should be able to help - but I'm assuming that appointment won't be for a few weeks yet?

Thanks for the messages @Ojejku and @Owl86 - i have reached out to a private endocrinologist this morning and will also do my best to speak to NHS doc asap although it's proving near impossible.

I have some spare Levo so have started taking it

I was prescribed 50mg before x

Good luck!

I am really scared them that my dose is too small ☹️ should be on 50mg but my doctor gave me only 25 for now as I am only starting. I really hope he will agree to increase it after first blood test if needed 😔

Bit of an old thread but seems like you ladies know your stuff. I'm 35, TTC since the start of the year with no luck. Have issues with spotting, some tiredness and am that person always under blankets or in a down jacket. Did a mail order thyroid test and got a reading of 2.88. have ordered another for a month's time. Already under GP for spotting. Assuming the 2nd test comes back with a similar level do you think the GP will do anything or will they think I'm mad?

Should also add I get heavy periods and my TSH was tested at night after eating which I've read might have an impact.

@Un7breakable yes defo try to get it. But it's unlikely your GP will prescribe. I would suggest booking an appointment with a private fertility practice and say you have been trying longer than you have and you are considering IVF but want to get a fertility MOT first, get them to test TSH (they likely will anyway) and everything else, then when they come back with elevated TSH, say you have read it needs to be under 2 and can you give me a letter to take to my doctor to get a prescription. Your doctor should prescribe it with a letter like this and with the view that IVF is
on the cards / your age. Then say you want to wait a couple of months regulate your TSH before you go down ivf path. This hopefully you will get pregnant.

This is what I did, and twice I was pregnant with 1-2 months. Then you will need to stay on the dose throughout your pregnancy and ideally for first couple of months of post partum.

I had a similar level to you. 20 weeks pregnant with DC2.

Good luck!