Tingly Legs: Been on 25mg levothyroxine for about... - Thyroid UK

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Tingly Legs

Bristolgal8 profile image
8 Replies

Been on 25mg levothyroxine for about 18 months due to Tsh being 3.0 and GP wanted it under 2.0 as trying to conceive. Never noticed any side affects. For about 4 weeks now I've had a tingling feeling in legs and feet and one hand which is carpal tunnel like. Bloods fine, b12 satisfactory and tsh is 1.9.

Could levothyroxine suddenly be causing these symptoms or could my dose be too low? I was never symptomatic of underactive thyroid but now I have the tingling and also feel cold etc which is new to me. Neck scan for enlarged lymph nodes years ago showed cyst on thyroid but consultant wasn't concerned.

And advice?

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Bristolgal8
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SlowDragon profile image
SlowDragonAdministrator

what is actual B12 result and ranges

Levothyroxine doesn’t “top up” your own thyroid, it replaces it

25mcg isn’t even half the standard starter dose levothyroxine

On levothyroxine TSH should be around or under 1

Just testing TSH is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you 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

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

SlowDragon profile image
SlowDragonAdministrator

Before considering TTC levels need to be stable

verywellhealth.com/infertil...

.

Pregnancy guidelines

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

NICE guidelines that if hypothyroid or subclinical you should see endocrinologist BEFORE TTC

cks.nice.org.uk/topics/hypo...

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

IMPORTANT See pages 7&8

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

Also here - dose increase in levothyroxine as soon as pregnancy test confirms conception

cuh.nhs.uk/patient-informat...

thyroidpharmacist.com/artic...

Low ferritin, low thyroid levels and miscarriage

preventmiscarriage.com/iron...

Low iron and hypothyroid

endocrineweb.com/news/thyro...

Folate and B12 and Neural tube defects and autism

healthunlocked.com/thyroidu...

In my experience, yes levo can cause this. I thought it may be because I wasn’t taking enough levo but when I increased it just got worse and worse and I had more side effects.

It only ever occurs when taking Levo so don’t think anything else can be to blame. :(

Everyone is different but taking larger amounts of levo didn’t help at all so I’m back on a lower dose. Everyone says you should feel best with a TSH around 1 but I felt absolutely awful and had symptoms of over medication. Not sure what the answer is but I can relate!

Insomania profile image
Insomania

If you can manage it financially, worth considering going private for the expertise and trying a different medication. I’m using a telehealth Dr on the Thyroid UK list which prescribes Natural Desiccated Thyroid NDT (combined T4&T3). Medication is slowly titrated based on blood results and symptoms. Night and day different to the NHS but obvs more costly. You can ask for recommendations in this group via direct message. Best of luck x

Bearo profile image
Bearo

As mentioned by Slow Dragon your thyroid meds largely replace what thyroid hormone your thyroid was making …..it goes to sleep, as it were. So on the tiny dose of 25mcg Levo your body was possibly getting even less thyroid hormone than it had before! That could explain the onset of symptoms. So you need a dose increase and tip top vitamins before considering conception

Good luck!

Bristolgal8 profile image
Bristolgal8

Hi everyone. Thanks for the replies. I was put on levo 25mg whilst I was trying to conceive and I fell pregnant so continued with the levo thought my pregnancy. Now I suddenly have these symptoms and I don't know if my tsh at 1.9 is OK or should I be on more levothyroxine or do I even need it anymore if I was subclinical to start and now no longer need it for conception purposes.

As for other vit testing all my GP ever tells me is satisfactory. I had initial thryoid testing done with thriva back in 2021 but haven't repeated it since.

Jaydee1507 profile image
Jaydee1507Administrator in reply toBristolgal8

1.9 for a TSH is high on treatment. I'd get the full testing done again to include all your vitamin levels as outlined above by SlowDragon.

Bristolgal8 profile image
Bristolgal8

Thank you. I think I'll use thriva as prob easier than trying to convince my GP!

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