Hashimotos/under active thyroid and Ferility - ... - Thyroid UK

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Hashimotos/under active thyroid and Ferility - any advice?

Calligraphy2020 profile image
16 Replies

Hi all,

I was diagnosed with Hashimotos in 2019, about the same time we started trying to conceive. It’s been 2 years now and I’ve not become pregnant.

I know an underactive thyroid can affect fertility, and my TSH has been from 6.0 down to 0.5, so I’m not surprised, though my infertility is down as ‘unexplained.’ The last year or so it’s been 2.5 which from what I’ve read is about right for trying to conceive, but then I started feeling rubbish and knew it was out again - blood test revealed my TSH was 3.75 and then 5.5. T4 has always been in range I believe.

I’m frustrated because my GP doesn’t take it seriously and I have to beg her to do a blood test, she won’t just do it every month or so. Putting how I feel aside - which is often tired/low energy/depressed, the fertility side really worries me.

We are under a clinic now for IVF and they’ve said my TSH and T4 need to be in range - and they’ve asked my GP to refer me to an endocrinologist, which she has grudgingly done, but even the clinic don’t seem to be taking my thyroid disease that seriously.

I think I’ll be going for IVF before I get the endocrinologist appointment, and I worry that I’ll go for IVF with a thyroid level that is out of range. And also that I’ll just not feel right - I still don’t quite know which range suits me, but it’s definitely lower TSH rather than higher.

Any advice? I feel thoroughly angry and upset that no one seems to take this seriously, and they don’t seem to understand how it feels to live with this disease, not to mention all the upset of not being able to conceive on top of it!

Thanks :)

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Calligraphy2020
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Yes TSH must be under 2.5 before TTC and with Hashimoto’s low vitamin levels are extremely likely, especially if under medicated

Most Hashimoto’s patients when adequately treated will have TSH well under one.

How much levothyroxine are you currently taking

Do you always get same brand

What vitamin supplements are you currently taking

As you have Hashimoto’s are you on strictly gluten free diet

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Before TTC levels need to be stable

verywellhealth.com/infertil...

Pregnancy guidelines

thyroiduk.org/having-a-baby-2/

gp-update.co.uk/files/docs/...

See pages 7&8

btf-thyroid.org/Handlers/Do...

Calligraphy2020 profile image
Calligraphy2020 in reply to SlowDragon

Thank you so much for all this information, it is so helpful and I’ve learned a lot!

I’ve just had my dose increased to 100 mg. I had a blood test a couple of weeks ago and my TSH was back down to 2.2, T4 was 14.0, I’ve had T3 tested before, I’ll look up the results.

My iron and ferritin were low and the GP recommended me to take a multivitamin so I’ve been taking that for a couple of months now - a women’s vitamin supplement. The others were all ok.

I didn’t know about the best way to have blood tests so thanks for that! I’ve not been following a gluten free diet.. I’ll try that.

SlowDragon profile image
SlowDragonAdministrator in reply to Calligraphy2020

Before considering strictly gluten free diet get coeliac blood test done first

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s 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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 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

healthcheckshop.co.uk/store...?

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

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

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

restartmed.com/hashimotos-g...

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.

klr31 profile image
klr31

What are your results showing and vitamin D, B12, folate and ferritin?Karen

Calligraphy2020 profile image
Calligraphy2020 in reply to klr31

Hi! My ferritin and iron were low - first time ever, so I’ve been taking a women’s multivitamin.. thanks

klr31 profile image
klr31 in reply to Calligraphy2020

You need all your results with ranges and ensure your levels are optimal.

SlowDragon profile image
SlowDragonAdministrator in reply to Calligraphy2020

We never recommend taking multivitamins Too little of what we do need

Essential to test vitamin D, folate, ferritin and B12 at least annually

Have you had vitamin D, folate and B12 tested

How low is ferritin ?

Multivitamin unlikely to improve low ferritin much

If ferritin is low GP should have done full iron panel test for anaemia

What’s your diet like, are you vegetarian or vegan?

Heavy periods can lead to low ferritin levels

Multivitamins are only for worried well

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Improving nutrients improves conversion

healthunlocked.com/thyroidu...

Calligraphy2020 profile image
Calligraphy2020 in reply to SlowDragon

Ok thank you. The ferritin and iron wasn’t out of range, just on the low side, I’ll dig out the results.

I am actually semi vegan but have been my whole life and never had any issues with low iron or anemia, which suggests maybe the latest development is Hashimotos-related..

SlowDragon profile image
SlowDragonAdministrator in reply to Calligraphy2020

Presumably you supplement B12 daily

What other vitamin supplements do you normally take

With Hashimoto’s it’s extremely common to struggle to maintain optimal vitamin levels, but especially if vegetarian or vegan

Iron is much harder to maintain if non meat eater

When hypothyroid we frequently have LOW stomach acid and this leads to poor nutrient absorption and low vitamin levels

Both B12 and folate are Goldilocks vitamins for a baby’s development. Levels need to be good, but not too high

Calligraphy2020 profile image
Calligraphy2020 in reply to SlowDragon

Thank you very much for this. I’ve been taking the Tesco women’s supplement, which contains vitamin B12, iron and many others:tesco.com/groceries/en-GB/p...

The folic acid is a bit low for TTC but I’ve given up taking the full dose after 2 years of taking it every day - plus I’d be overdosing if I took it separately as well.

Would you recommend taking anything else?

I do try and eat a balanced home cooked range of foods, but maybe this doesn’t make much difference if I’m not absorbing it properly.

I do a stressful job and previously did a lot of strenuous exercise (CrossFit), but I’ve gone down to 4 days a week at work and just walk and do yoga now.

Thank you for your time :)

SlowDragon profile image
SlowDragonAdministrator in reply to Calligraphy2020

Strongly recommend you get vitamin, folate, ferritin and B12 levels tested

Important to not have too little, or too much B12 and folate before TTC

If needing to improve low folate, you will need good quality folate supplement. (Not folic acid)

Multivitamins are never recommended on here as too little and usually cheaper poorer quality ingredients, poorly absorbed.

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Xheila profile image
Xheila

Hi, I think I’ll be going for IVF before I get the endocrinologist appointment, and I worry that I’ll go for IVF with a thyroid level that is out of range.

My advice is to absolutely wait to get your thyroid in order before going for IVF. Even if you are worried about getting older or are in a hurry to get pregnant, please consider waiting so you can address your thyroid first. I went through a number of rounds of artificial insemination and then later found I was infertile bc of my hypothyroid condition. I wasted a TON of money that I'll never get back, not to mention the stress of going through that each time.

I've always taken NDTs, not levo, so I don't know too much about the differences between the two, but you definitely need to get tested for your Free T3, and from your symptoms, it sounds like you are too low on FT3. It appears to not be enough just to be in range, you need to be at least 1/2way up in the FT3 range in order to show your meds are working. This was absolutely the case with me. After any given dosage increase, I might seem o.k. on the lower dose for a while but after 6-8 weeks, it was not enough for my body and I crashed. I was not good until FT3 went above mid-range.

stopthethyroidmadness.com/l...

Blessings on your journey!

Calligraphy2020 profile image
Calligraphy2020 in reply to Xheila

Thank you! This is really helpful.

I meant to say that I’ve no idea if I always take the same brand of levothyroxine, I’ll have to keep an eye out.

Sounds like I really need to push to see an endocrinologist then, and really talk to the clinic before going ahead with IVF..

Thank you for your advice!

Calligraphy2020 profile image
Calligraphy2020 in reply to Calligraphy2020

Ps what are NDTs?

And have you seen an endocrinologist? If so, were they helpful?

Thank you for your advice!

Bearo profile image
Bearo

NDT is natural desiccated thyroid....made from animal thyroid. It was the original thyroid treatment but has been withdrawn from NHS prescription. Some prefer it to Levo, but it doesn’t suit everyone.

I’ve never seen an endo but have read on this forum that Not everyone is helped. Many endos are diabetes specialists who seem to know as much about thyroid as GPs, unfortunately.

Dionne at Thyroid UK has a list of endos that have been recommended by people on this site.

There are a couple of articles on the Thyroid UK website about pregnancy and thyroid so reading those would be a good starting point.

I wish you success.

Calligraphy2020 profile image
Calligraphy2020 in reply to Bearo

Thank you so much for your reply, I’ll check out the information and list of recommended endocrinologists. What a helpful resource!

Appreciate you responding, thanks

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