High thyroid antibodies

[Citizenerased83]

Hi,

I hope everyone is OK.

I've tested positive for very high thyroid antibodies and Dr at fertility clinic said this can be a cause of miscarriage and I have had 2 already. I've had an underactive thyroid diagnosis since 2012 and been on levothyroxine since. When I first started fertility treatment, the clinic said my TSH level had to be below 4. Now, because of the thyroid antibodies they've said my TSH level has to be 2.5 or under. Feeling pretty upset by it all as I now have to have another blood test, change my medication dose and wait 4-6 weeks to test again. It's always trial and error with getting the right medication dose and delays my next FET further. We've had so much heartbreak already and previous delays because of my thyroid. I don't know if anyone knows anything about thyroid antibodies that could be helpful or if they have some words of comfort. Feeling pretty down about it all.

X

[Habibi87]

Hi love, really sorry that you are experiencing more delays particularly as during fertility struggles all one wants is speed. Do you know which antibodies were tested? The majority of people with hypothyroidism have it because of an autoimmune condition called Hashimoto which is detected through specific sets of raised antibodies. In 2012, did they only test your TSH and T4? My suggestion is that you post on the Thyroid UK group here on health unlocked. There are a lot of very knowledgeable people there. They’ll probably want to know all the values you have and the ranges (tsh, t4, t3, tpo etc). Except for wanting to lower your TSH, has your doctor set targets for your t4 and t3 and suggested anything further for autoimmune protocol ? X

[Citizenerased83 in reply to Habibi87]

Hi lovely, thanks so much for your reply . I'm not sure re 2012 test. The Dr at the fertility clinic only focused on the TSH level when I spoke to her today. My experience of the clinic has been that they're only really concerned about the TSH level. Thank you - that's good advice. I'll post in the Thyroid UK group. I'm speaking with my GP tomorrow so will ask them if my T4 and T3 also need to be at a certain level. Feel like we have to find out a lot of information on our own. X

[magda22]

Just wanted to say....I totally get how depressing and demotivating it is when you get news that something ELSE is going to delay starting. I've had that many times and it crumples me. Makes me feel that nothing will ever go right, and I fact, it got me really stuck for a while. I put off starting. It's such a mechanical process, even though they are trying to give you the best chances possible. I think, take a deep breath, and get going with what they've suggested. It will come around. Sending much love and luck

[Citizenerased83 in reply to magda22]

Thanks Magda22. I really appreciate you messaging. Things are never as simple as you'd like are they. Thank you - wishing you lots of luck too x

[river242]

Agree with the recommendation to post in the Thyroid UK group who always give good advice. I also have hashimotos and very high antibodies which has been the cause of implantation failure for me. I am 11dpt my 6th transfer and waiting on beta results today so I'll tell you later if it's finally worked but I've had a range of treatments to tackle it. You definitely want TSH under at least 2.5 but I'd be asking they're actually going to treat the antibody issue- I've had steroids, tacrolimus, granocyte, IVIG and PRP across various cycles. I know these delays are depressing but after 5 failed transfers and a natural mc I'd say ask the questions now. I've also found diet changes have reduced my antibodies naturally. Happy to chat if you want to DM

[Citizenerased83 in reply to river242]

Hi River242, thanks so much for messaging fingers crossed for your blood test results. I really hope it works for you this time.Both the fertility clinic Dr and the GP are saying that there isn't anything they can do to treat the high level of thyroid antibodies and the fertility clinic is insisting on TSH level under 2.5. The problem is that when my medication gets increased and lowers my TSH, my T4 level increases to beyond the optimal range so I start to feel unwell. The levothyroxine dose I'm on at the moment has both TSH and T4 in the right range but just not for fertility treatment. The GP said based on my next blood test results they can speak to an endocrinologist and see what they suggest.

Interesting that you've had treatment for the antibody issue. Was that through your fertility clinic? Mine say there is nothing they can do to treat this and I just need to increase my levothyroxine dose.

What changes to your diet did you make? Xx

[river242 in reply to Citizenerased83]

I'll send you a DM

[river242 in reply to river242]

Just for an update... I just got my BFP so there's something in the immune treatment that has worked x

[Citizenerased83 in reply to river242]

Wonderful news - really pleased for you x

[MontsJ]

Definately join the Thyroid UK group and look into Hashimotos. If you have this you might benefit from an AIP diet of trying to conceive.

[Citizenerased83 in reply to MontsJ]

Thanks so much MontsJ. I shall join that group and look into AIP diet. X

[Nevergu]

A lot of women conceive without problem with thyroid antibodies. You just need to get your tsh, t4 and T3 under control. Once you increase medication your tsh adjust quickly.

[Citizenerased83 in reply to Nevergu]

Thanks so much Nevergu. That's reassuring.

[Eloquentia]

Hi! I know how disappointing it is to have things delay the next round...I have hypothyroidism too and have always been told by my consultant and the IVF clinic that having the hormones in the right range is crucial for implantation. So hang in there, it is all worth it in the big scheme of things! As for the antibodies, although they are checked together with the thyroid hormones, my understanding is that once you have hypothyroidism, they won't go back to normal. What matters for pregnancy is that the thyroid hormones are within a certain range. Very best of luck!

[Citizenerased83 in reply to Eloquentia]

Hi eloquentia, thanks so much for your message. Sorry that you also have hypothyroidism.

That was my understanding about the antibodies too although from reading things online people suggest you can reduce the levels. The GP said they're not harmful although if they cause miscarriage or problems with implantation they are harmful. Sigh!

Thank you and good luck to you too.

[Eloquentia in reply to Citizenerased83]

Thank you! For what it's worth, I am currently 35 weeks with TSH under 2.5 but high antibodies. They do monitor thyroid hormones and antibodies during pregnancy and double your levothyroxine dose because of the increased blood volume. So don't worry, hypothyroidism is not an insurmountable obstacle! Just takes time and patience to manage...

[Citizenerased83 in reply to Eloquentia]

Congrats, thats great news. Hope the remainder of your pregnancy goes smoothly. Your situation is reassuring. Did you have high antibodies when trying to conceive or was it once pregnant? X

[Eloquentia in reply to Citizenerased83]

Thank you! Both...They just haven't really gone down since I was diagnosed with hypothyroidism over 10 years ago. xx

[Citizenerased83]

Thank you, that makes me hopeful x

[Pnw2020]

Hi. Hope you get a reply on the thyroid uk forum. I found it really helpful as was also diagnosed with Hashimotos. It took a while to get the right dose of levothyroxine. The forum recommended vitamin testing to ensure optimal vitamin levels. Would recommend this as I found out I was low in Vitamin D. I also went gluten free but have since reintroduced this.

My clinic weren’t keen on steroids for my case but I was on clexane/ aspirin. Maybe that’s something to ask about. I had twins by the way x

[Citizenerased83 in reply to Pnw2020]

Thanks so much Pnw2020. That's really helpful to know. I'll check about the vitamin levels and clexane/aspirin. Congrats on your twins. That's great news and gives me hope x

[Pnw2020 in reply to Citizenerased83]

Thank you. Good luck with your journey x

[Citizenerased83 in reply to Pnw2020]

Thank you so much x