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 following IVF treatment. 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 IVF Frozen Embryo Transfer 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.
Thanks!
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I think it's more about your thyroid hormone levels than antibodies and TSH.
TSH should be 1 or under for everybody. If it's 4 that means you're still hypo.
The antibodies are just telling you that the cause of your hypo is autoimmune - Hashi's - and there's not a lot you can do about them.
But, you do need your hypothyroidism correctly treated if you want to conceive, and yours isn't.
We all have problems getting the right dose, because doctors are so cluless about thyroid. So, the best thing you can do is learn about your disease - just reading on here will help you enormously - and either self-treat or advocate for yourself with your GP.
The first step is to get full thyroid testing:
TSH
FT4
FT3
vit D
vit B12
folate
ferritin
You already know you have Hashi's so no point in retesting antibodies, they don't go away, even though they fluctuate all the time.
If your GP won't agree to do all those tests, you could do them privately without involving a doctor.
How much levo are you taking at the moment?
Don't worry, it can be done, but it's never rapid. I'm sorry you've had so many disappointments, but at least you're on the right track, now.
Thanks so much for your response. It's so helpful. I'm currently on levothyroxine dose of 75mcg, 5 days a week and 100 mcg, twice a week. In April '23 my TSH was 3.74 mIU/L and T4 20.4 pmol/L.
I feel well on the above dose of levo. My fertility clinic did a whole load of blood tests to try and find out what caused my miscarriages and the thyroid antibodies was included.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
What dose of levothyroxine are you now taking and which brand
For full Thyroid evaluation you always need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and especially if not on high enough dose levothyroxine
On levothyroxine TSH should ALWAYS be below 2
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Well, your TSH is saying that you're under-medicated, and you're not on a very high dose. Remember that in the first trimestre the baby will be living on your thyroid hormones, until it develops a thyroid of its own. So, you need to have enough. Your FT4 is probably good - although you haven't given the range so impossible to say for sure - but your TSH being high probably means that you aren't converting it to T3 correctly, and your FT3 is low. Even if it is just the T4 that crosses the blood/placenta barrier, and there's some doubt about that, you need T3 yourself to keep you healthy enough to sustain the pregnancy.
Thanks greygoose. I'm getting tests again next week and the GP said she can speak to the endocrinologist at the hospital too once results are back. I'm going to ring GP on Monday to ask them to also check my vitamin levels. When I get my thyroid checked via my GP they only check TSH and T4. I've not had the written results from the fertility clinic for my thyroid antibodies blood test so maybe they'll include info on F3 and F4. I've not heard of these two before I don't think.
FT3 and FT4. F stands for Free, available for use by the body. They rarely test FT3 because they don't know what it is! But, it is vitally important to know your level.
T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. T3 is needed by every single cell in your body to function correctly. It's low T3 that causes hypo symptoms.
And lastly high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
NICE guidelines on testing for Coeliac as soon as Hashimoto is diagnosed
Inadequate thyroid hormone can be a cause of miscarriage (by raising prolactin that reduces LH release, decreasing progesterone receptor sensitivity and so also FSH in the follicle). If this happens it is skewing the communication to the pituitary gland which also controls TSH that instigates thyroid hormones levels in a ’healthy’ situation.
Conventional medicine state that a TSH between (0.4–2.0 mU/L) and an FT4 concentration in the upper reference range is essential in order to conceive and retain the foetus, as deemed to provide enough thyroid hormone (it is known that the need for thyroid hormone increases in the early part of pregnancy due to the foetus but also increased oestrogen levels of early pregnancy).
If thyroid hormones are low (particularly FT3) once pregnant, you also risk an exaggerated insulin response and possibly near diabetic blood sugar levels (gestational diabetes).
However, elevated thyroid antibodies is more unknown territory that conventional medicine ignores but functional medicine deems undesirable because the presence of thyroid antibodies increases the risk of thyroid hormone fluctuation (unless adequately dosed when low). There is research into thyroid antibodies crossing the placenta and the origin of the TPOAb in those babies born is thought to be from the mother.
A high level of autoimmune response can also invite further unwanted autoimmune issues, and given that many immune changes take place in the body to accommodate acceptance of the foetus, don’t assume your endo or gyne understand the repercussions of thyroid autoimmune disease.
If you read books such as "Your Healthy Pregnancy With Thyroid Disease" by Dana Trentini and Mary Shomon, and view websites such as ‘hypothyroidmom’ the general consensus appears to be to keep antibodies as low as possible through means such as eliminating cross-reactive foods, avoiding sugar spikes, supplementing selenium, fish oils, Vit D etc, that helps calm an over active immune response and reducing the chance of attacks on thyroid peroxidase (TPO) & thyroglobulin (TG).
Thanks so much Radd. Really appreciate your taking the time to respond to me and explaining all of this. It's such a minefield and GPs seem to give the minimum amount of information.
That’s because the possible ramifications of elevated thyroid antibodies isn’t recognised by conventional medicine. Unlike autoimmune conditions such as rheumatoid arthritis where immune suppressive drugs are used, in Hashi the thyroid gland is allowed to be destroyed enough until replacement Levothyroxine meds can be offered.
When I first started fertility treatment, the clinic said my TSH level had to be below 4.
I am so sorry to have to read this and be the one to tell you this, but when trying to conceive TSH should be 2.5 or under and throughout the first trimester. The fertility treatment people should have know that.
Hi HealthStarDust, thanks for your message. I don't know why my clinic said this but I looked at some info online yesterday and it said what you have that TSH needs to be under 2.5. Both times I was pregnant, TSH was under 1 when I had frozen embryo transfers but shot up to over 5 each time when I had a positive pregnancy test. My levo dose was increased immediately but perhaps that was but enough.
It seems like they may have been doing it right then. I’ve read a full TFT test at the point of conception and another 2-4 or 4-6 weeks after as dose needs to be adjusted rapidly in those few months.
TSH is always variable so I am not sure why it is depended on so much in pregnancy. I did read another article recently that stated FT4 in the upper ranges (70%) or higher is associated with a reduced change of miscarriage.
IVF with Hypothyroidism is a double whammy. I hope for success with you soon. Don’t give up. The horror stories on infertility or subfertility are large, but many people with this condition do have children.
Thanks so much HealthStarDust. I'm not sure about why there is so much focus on TSH either for pregnancy. That's helpful to know about FT4.Thank you for your kind words and words of hope. It's much appreciated.
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