Newbie to levothyroxine and feeling strange - Thyroid UK

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Newbie to levothyroxine and feeling strange

Tingletoes24 profile image
9 Replies

Hi just been told by Dr I have borderline hypothyroidism (tsh 4.3). Also that I have antibiodies against my thyroid. I started on levothyroxine a week ago and am feeling really strange. Not dizzy as such but like I'm on a boat or drunk. Also neurological symptoms like tingling in left foot and muscle weakness in lower back and legs. Could this be due to the levothyroxine? Has anyone else experienced this? I'm waiting for further antibody test results

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startagaingirl profile image
startagaingirl

Hi - this could very well be due to low vit B12 which is very common with hypo and Hashimotos. Ask your GP to test you for it.

PS: you have posted this twice - could I suggest you delete the other post to avoid confusion? If you click on the down arrow below the post, it should give you an option to delete.

Tingletoes24 profile image
Tingletoes24 in reply to startagaingirl

Many thanks Startagaingirl. I wondered about vital b12. Have started taking supplements but maybe dosage is too low. Also I'm vegetarian / pescetarian so that may not help.

My TPO levels are 80....Does that definitely suggest hashimotos?

startagaingirl profile image
startagaingirl in reply to Tingletoes24

Hi - it is very common for hypos to be low in B12 even if not vegetarian due to low stomach acid anyway, but combined with veggie you are obviously at much higher risk. I would try to get your gp to run a test on your levels but if they won't (and if private testing is not an option for you), I would supplement given your symptoms. B12 is water soluble hence any extra is passed out through the kidneys so there is no risk of overdose (just expensive urine!). It is typical for hypos to need a dose of 5000 per day, sublingual methylcobalamin is the best version generally available short of injection, though there are also nasal(?) sprays available. It is important to keep all B vits balanced so you should also take a mixed B supplement alongside. Solgar, Jarrow and Thorne are all widely recommended brands.

The range for TPoAb is normally <34 for negative. If this is your range then yes you do have Hashimotos which causes 90% of all hypothyroid.

Gillian

SlowDragon profile image
SlowDragonAdministrator

Gluten free diet has helped very many of us with Hashimotos to improve symptoms and reduce TPO antibodies. Something to consider.

But first get use to Levo and get B12, folate, ferritin and vitamin D levels checked

If you have taken any B12 in last 2-3 months then test will not give a true result. In which case you probably have to just supplement anyway. Plus a good vitamin B complex to keep B's in balance

When getting retested for thyroid levels very important to stop any supplements containing Biotin (that includes most B complex) 4-5 days previously. Biotin can falsely affect TSH results

Tingletoes24 profile image
Tingletoes24 in reply to SlowDragon

Thanks Slowdragon. That's helpful..I'll request all those tests from gp. So with hashimotos will the symptoms be always present or will they come and go? What are the primary symptoms would you say? I have had joint pains for a few months but only recently in the last week have experienced vertigo and more muscle pain and weakness...

SlowDragon profile image
SlowDragonAdministrator

Every person is different, it might depend how long & how badly you were hypo before diagnosis. How low vitamins are and how compromised gut function has become, or if as result you are gluten and/or dairy intolerant

Don't expect your GP to know that a thyroid condition might be connected to digestive system. Most have no idea at all. They don't "treat" Hashimoto's- they just replace the thyroid hormones.

Joint pain may be low vitamin D. With Hashimotos (or lots of other autoimmune diseases) we either need more or use more Vitamin D.

Always get print out of test results including ranges (figures in brackets). Then put a new post on here for advice

We seem to need vitamins at top of their range. B12 for example has wide range of typically 210-780. A GP would say result was fine or normal if it was 220 or 770. With Hashimoto's we seem to need it at top end ideally or at least above 500.

Similarly vitamin D seems better for many above 70 and ideally about 100 nml/L (UK units - USA has different units)

See Thyroid Uk website for lots of info including where to get private blood tests if GP unhelpful

The Thyroid Pharmacist website has lots info on Hashimoto's

Tingletoes24 profile image
Tingletoes24

Thanks for all your advice. Ive been taking 50 micrograms vit D for years which I had assumed would be more than adequate as I thought it was a fairly high dose but maybe not with this condition?

SlowDragon profile image
SlowDragonAdministrator in reply to Tingletoes24

Get tested - we shouldn't take vitamin D long term without checking levels. The body can't get rid of excess.

Assuming your in UK private testing by post £28 from vitamindtest.org.uk

Tingletoes24 profile image
Tingletoes24

Thanks yes in UK... Will get my gp or endocrinologist to look into it.

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