Thyroid antibodies and TTC

[MML]

Thyroid antibodies... anyone else?

I'm desperate for my first baby and have been TTC for 18 months, and had an early miscarriage in February at 7 weeks, which left me and my partner devastated but determined to find answers.

I have been found to have slightly high TSH (4.07, above the optimal number for fertility but not quite bad enough to be considered an underactive thyroid) and my thyroid peroxidase antibodies are elevated at 142.

All the medical papers I've read online and podcasts/audiobooks I've listened to have told me - antibodies = bad. And they are associated with a much greater risk of pregnancy loss. Which is not great.

And they seem to be very hard to fix, and it doesn't look like the normal thyroid meds would help.

I haven't got a treatment plan for this, my NHS GP really didn't seem fussed - I'm toying with the idea of a private endocrinologist, but not sure if it's worth it.

I wanted to know if anyone else has been diagnosed with elevated thyroid antibodies and if so, what you have done about them and if you've got any further down the line into eliminating them?

And has anyone had a successful pregnancy despite having elevated thyroid peroxidase antibodies?

I am full of fear that this means that I am always going to be at a greater risk of miscarriage and pregnancy complications. But I am really hoping this isn't the case!

Heya, I don't have a success story yet sadly but did want to share my experiences as they are similar. My thyroid went crazy after baby no1 (TSH7ish) and I was symptomatic until it got under 3. Started thyroxine which increased the frequency of conceptions but not been successful yet - I too have worried about antibodies but as these things are never straight forward I doubt its this and this alone causing me problems. Antibodies are very common so I wouldn't worry about it at this stage. That said, going gluten free has helped bring antibodies down in my case and I'm currently pregnant albeit very very early days.

I had a private ivf clinic lower my level TSH to well under 2.5. I was put on levothyroxine. My gp is useless. I kept trying to tell them my TSH had to be under 2.5 to get pregnant and maintain pregnancy but they kept telling me my 4.2 was normal. I also have extremely high anti- thyroid antibodies so was given a steroid by the private ivf clinc whilst I was pregnant. I was diagnosed with Hashimoto (autoimmune condition) privately as my gp didn’t care about my family history so didn’t bother testing my antibodies. I got the clinic to write a letter to the gp to monitor my thyroid levels whilst pregnant because they were so useless. Get a private endocrinologist. I had a successful outcome in the end so don’t accept being fobbed off.

@Chasingbaby2 thanks for sharing - yes, I am looking into going gluten free and have already started phasing it out. Have an appt with a nutritionist to discuss all of this later this week, so will see what she says. Wishing you all the best in this pregnancy too, hoping that your lower antibodies really works for you!

@Cherry2456 interesting - I am waiting to hear back from my GP who is 'checking with guidance' on this as I really stressed the importance of sorting TSH and antibodies (seriously why are we the ones having to educate them?) but I am not filled with confidence. She really did not understand. I'm glad going private worked for you and you got the outcome you wanted! I hadn't heard about a direct treatment to reduce antibodies before so that definitely sounds promising.

BTW I had no luck with the NHS GP either, I went to a private GP who was willing to prescribe a low dose of thyroxine and basically stood my ground with the NHS to continue it/up the dose to get under 2.5. They are useless on this stuff. Pre thyroxine 12 months between conceptions, and at least every other month thereafter..this was before making any other changes. Whilst not a true success story yet you can see how directly the thyroid function affects fertility.

Hi, no experience with antibodies but my thyroid went crazy after my first baby - I felt like death turns out my TSH was 91!🙀
I started 100mg levothyroxine but my GP was quite clear that she didn't know much about hypothyroidism. My TSH went to 4.8 and then I asked for increase so we could TTC. I'm now on 125mg, TSH of 0.48 and early stages of pregnancy. If my GP had been reluctant I'd have gone private to see endocrinologist so if you can afford it I'd go for it. GPs seem a bit clueless!

hi @MML I’m currently 19 weeks pregnant, my anti bodies are also high, I can’t remember the exact number but I think it was 3. Something. I didn’t actually know until I was pregnant and had the blood tests at my booking appointment. They’ve put me on levothyroxin for 4 weeks and I see a specialist next week once I’ve finished the course to see what happens next. I did speak to my GP when I first found out they were high and he said it was nothing to worry about and isn’t affecting the function of my thyroid. Hope everything works out for you x

Before my first pregnancy my t3 and t4 were low and tsh was about 4. GP wouldn't do anything so I went to a private endocrinologist. He prescribed a low dose of thyroxine and I got pregnant 6 weeks later. My thyroid was monitored throughout pregnancy (as I was taking thyroxine the midwife referred me to the antenatal endocrinologist) and my dose of thyroxine was increased about halfway through.

After the birth, my thyroid went slightly overactive and blood tests showed that I had both trab and tpo antibodies (antibodies for hashimotos and also graves- you can have both at the same time!)

Thr endocrinologist wanted to put me on thyroid blockers, but they made me ill, so I stopped taking them and did all the natural treatments- namely diet and lifestyle. I did everything to reduce stress- daily breathing exercises, yoga, gentle exercise, etc and did an elimination diet, combined with things to "heal a leaky gut"- bone broth, vitamin d and selenium supplements, omega 3 fish oils, probiotics, etc. I eventually reintroduced everything back into my diet except for wheat/gluten and cow dairy. 4 weeks after starting this protocol, all my thyroid numbers were normal. I still had antibodies, but they were at lower levels. A couple of weeks after levels were normal, I got pregnant. I've tried to stick to eating as healthily as I can (albeit the odd chocolate bar has crept in here and there!) and I'm strictly gluten free. Thyroid numbers have remained in range but I have to have extra growth scans at 26, 32 and 38 weeks to check that all is OK with the baby's growth and it's thyroid, although I was told that there was only a small risk of antibodies crossing the placenta. I'm currently 20 weeks and getting my scan this week.

Good luck! Definitely look into diet and lifestyle. It can really make all the difference!

Thanks, everyone - some interesting and v useful guidance in here! I'm also mainly relieved to hear stories of people with TPO antibodies and successful pregnancies. And just the general fact that this condition can properly be managed... although not by most NHS GPs. I think I will look into a private endocrinologist as I have such little faith in my GP.

I'm already changing my diet a fair bit - I'm cutting caffeine, I'm trying to go as gluten-free as possible and really reducing sugars and rubbish. Hoping that makes a huge dent. I've also done my best to eliminate as many toxins, BPA and phthalates from my cosmetics and home... something has to work, right!

Congrats on all of your pregnancies @Nuglife123 @Pitstop1986 @Purpleflowers21 and wishing you all the best!

TSH levels above 2.5 can cause an increase in miscarriage.
My Gp was contradicting what two consultant endrocrinologists had told me.
I received steriods privately as part of the ivf process for a short period of time and after a mc. They don’t give them out on the NHS. It’s a grey area, however they reduce your antibody levels but make you more vulnerable to fighting infection. If I were you I would get your TSH down to well below 2.5 then see what difference that makes. I have a friend who had a high number of natural killer cells she cut out gluten and over hauled her diet. Both of us had successful pregnancies after mcs. There is a clinic in Epsom which specialises in mcs and antibodies.

GPs don't understand the thyroid in my experience-endocrinology is a specialism for a reason. I had my thyroid removed a few years ago and. I had to argue to get my dose upped from 100 which showed 'perfect' TSH and T4 levels because it wasn't right for me. My ideal TSH runs at less than 1 (which is considered too low on paper) and my T4 over 18 which is when I feel normal, anything more/less and I feel sluggish and tired. I had a healthy pregnancy at these levels although I had to up my thyroxine considerably. Of course try natural methods to support (acupuncture great also) but getting your levels right FOR YOU is key.

I'm say it's absolutely worth getting a private consult, ideally with someone who specializes in fertility/pregnancy endocrinology. I'm not sure where you're based but my team were at Addenbrookes in Cambridge and they were excellent. Best of luck 💐

Thanks everyone - has been really interesting to read your experiences, and battles with the NHS!

@ShinyHappyTits Sorry you had to habe such a battle for your own health, but it seems to be the way with our doctors. I have also been seeing an acupuncturist for a while and it's a revelation, it has really chilled me out!

My GP has very begrudgingly prescribed me with 25mg of levothyroxine but has been told by an endocrinologist it isn't necessary and comes at a risk.

My TSH is currently 4.07 and my T4 on the low side at 13.8, with antibodies at 142. I am working with a fertility acupuncturist and a nutritionist/functional medicine expert, both of whom have advised me I need to be on medication. But the GP claims that your TSH only needs to be 2.5 or lower for fertility if you are already on medication. Vv confusing and contradictory to what I've read online/heard from doctors on a few podcasts.

But we shall see how I go! I have also overhauled my diet, am going gluten free now, cutting back on sugars etc, and have been put on an extensive supplement plan for my sluggish body. I don't think I ovulate properly so hoping that gets sorted asap.

Good luck.

https://www.createfertility.co.uk/fertility-guide/conditions/hyperthyroidism-and-fertility#:~:text=If%20the%20thyroid%20is%20over,affecting%201%25%20of%20the%20population.

Specialists in infertility operate different to gps. Even the NHS one said they had to reduce my TSH level to below 2.5. I went private after that because it was quicker. Also irregular periods might need to be regulated through a series of hormone tablets unless this is the result of the mc But they should go back to normal. Have you had a mot at a clinic? They check your hormone levels, structure if the uterus and Amh levels etc. Until your hormones are regulated the eggs won’t be released and you won’t get regular period so you have less windows to conceive. I looked back on my diagnoses letters and I have goitre, extremely high anti TPO and anti TG. I complained to my gps of having throat, tiredness etc for years and told them of my family history which they ignored because my TSH was at the top end of normal. So I went to see a professor of endocrinology to diagnose it. I had to have lots of medical interventions to get pregnant and stay pregnant.

3 rounds of IVF private
hormones before and after Ivf
progesterone pessaries to maintain pregnancy
levothyroxine
steriods
blood thinners
good diet
private ent- goitre
private multiple miscarriage blood tests
private endocrinology- Hashimoto

healthy diet and vitamin tablets
hypnotherapy

Hello, I hope it is ok to join this conversation - I have been searching for info on this topic for a while now! I had a baby in early 2021 and my TSH was 4.45 last June 2022 but this year it has dropped to within normal range at 1.48 (Feb) and 1.72 (July). However, in Feb of this year I was also reported as having 824.4 kU/L TGAB antibodies and understand it should be less than 115. I have been TTC baby #2 for 12 months now without success. Should I be pushing the GP for a endo referral for the thyroid antibodies or am I overly worrying about the antibodies if my TSH levels have sorted themselves out? Thank you 🙏🏻

Sorry to jump on the thread as I'm not ttc.
My TSH is 6+ atm. Up from 4.5 in jan. My oncologist who keeps an eye on my bloods, insists it's nothing to worry about as elevated TSH means your body is working as it should and correcting thyroid hormone levels

Hi there
I have hashimotos and saw an endocrinologist when I used to live overseas, I was told my thyroid antibodies were very high (in the hundreds) but I can't remember the exact figure.
When I moved back to the UK I was told they don't routinely test for antibodies so I have never had it rechecked. I have been on thyroxine for around 10yrs.
I had IVF for unexplained infertility and mentioned to the consultant that I was concerned as had read that high thyroid antibodies could be the cause of the infertility or cause miscarriage. He advised me not to worry about it and said as long as TSH is kept under 2.5 everything should be fine.
I got pregnant from my second IVF cycle (so lucky 💕) although at 6 weeks my TSH jumped up to 8 which they said was likely due to the IVF drugs. I increased my thyroxine and it was back to normal within 6 weeks. I am now 19 weeks pregnant and nobody is bothered about the antibodies. I am under consultant care due to the IVF but they are not even doing any extra growth scans etc due to the thyroid issue and have told me it should not have an effect. Hopefully this is reassuring! x

Thanks @Jupiteer ! Congrats on your lovely news and glad things are being managed and all is OK for you.

I have now been put on 25mcg of levothyroxine (after really pushing the GP) to bring my TSH down (they tried to tell me my 4.07 was fine and that the 2m5 thing isn't necessary....) and also changing some lifestyle/diet bits which I hope will reduce the antibodies over time. But it definitely doesn't seem to be a case of 'if you have antibodies you will miscarry' which makes me feel better!

I had results similar to yours, I think my TSH was 4.2, my FT4 was right at the bottom of the range, TPO antibodies were quite high. I felt absolutely awful and luckily a sympathetic GP started me on thyroxine, as she said with the antibodies it was autoimmune and only going to get worse over time.

I found I needed to keep my TSH low to feel well - at the bottom of or slightly below range.

I was already gluten free when diagnosed so no idea whether the antibodies were previously higher, or whether it made no difference, but they were retested a few years later and just as high.

Like you I was expecting problems but got pregnant immediately and had no issues.

Be aware that 25mcg is a tiny dose and may not be enough - I found my TSH fell quite a lot after 6 weeks on 50mcg but gradually increased over the next year and symptoms crept back in, so it got raised to 100mcg.

Thank you for sharing, that’s so helpful

@MML how did you get on? I have had a failed FET and was wanting to explore if it was my thyroid antibodies in my follow. Am already on Prednisolone when doing FETs

Just wanted to pop by with an update and I hope this doesn't come across in the wrong way. After getting my thyroid to optimal, I continued to miscarry (albeit more frequently) so went to the implantation clinic run by Professor Brosens in Coventry. They look at NK levels and endometrial receptivity under trials supported by Tommy's. It is self funded but not hugely expensive compared to private treatment. I was found to have low NK cells which can be as detrimental as too high. Their treatment worked and I fell pregnant the next cycle following.
I just wanted to share this as I had a suspicion the imbalances may have been related.

@Chasingbaby2 that is interesting. What were your circumstances and what was involved to do what you did?

@Sunflower360 sure! Background was 2 6 week mc in 12 months after an easy conception with my first, hashis diagnosed. 3 further losses in 6 months after starting levo. That's what lead me to research further as it seemed obvious that hashis was only part of the picture. Contacted Warwick via the pathway on here https://warwick.ac.uk/fac/sci/med/research/biomedical/tem/clinic/
Their research is in miscarriage and IVF implantation problems.
At the time I paid around £850 and got an initial consultation, biopsy for endometrial receptivity and NK cells, then follow up post results. Have to track ovulation to time the biopsy.
Based on if and what they find, there's a couple of different treatments, mine was 3 months Sitigliptin (no ttc during that time) and cyclogest from 3dpo thereafter. I believe for high NK it's a steroid treatment. My GP processed the prescriptions once I had the clinic letter. And my gosh, it worked! Due tomorrow!
I'd recommend exploring this if having similar issues and the staff could not have been more supportive and helpful. Neither GP or miscarriage consultant id been seeing had heard of this research, hence I try to spread the word :)

@Chasingbaby2 thanks! What was suspected to be causing your miscarriages if it wasn't Hashimoto? Did you have high thyroid antibodies and/or tsh?

Am already on Prednisolone during FET and Progesterone, with the FETs so not sure what else could be explored. Tbh it is quite early and I've had one chemical (Natural Conception) and a failed implantation but it could well just be due to my age as I'm 38. I've got another 7 embryos to work through so wanted to ensure as much is explored as possible before putting each of them back in