Worst 10 weeks of pain since taking levothyroxine - Thyroid UK

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Worst 10 weeks of pain since taking levothyroxine

Adalisone profile image
2 Replies

Hello all, I was wondering if someone could help me, I feel like I'm going mad. I stayed levothyroxine roughly 11 weeks ago, could it be a coincidence that I have so much pain, even when I'm lying in bed. From my neck, jaw, hands, wrists, knee, ankle and feet, I can barely walk in a morning and to get my hands to work really takes some time to straighten my fi fingers and when I do they feel like I have electric shocks going up them. Could the meds be doing this?? I'm on 75 dosage a day. Relying on naproxen and codeine just to make it bearable. Thank you in advance for any help xx

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Adalisone
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SlowDragon profile image
SlowDragonAdministrator

Low vitamin D is EXTREMELY common when hypothyroid and can cause widespread pain

Bloods should be retested 6-8 weeks after each dose change in Levothyroxine

Have you had bloods tested since starting on Levothyroxine?

Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Ask GP to test vitamins and antibodies if not been done yet

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients.

Teva is the only brand that makes 75mcg tablet.

magsyh profile image
magsyh

I discovered this when I first started levothyroxine. It happens too when I up my dose. Eventually your body will adjust. I found that the levo shuts down your thyroid when it gets some and with me my TSH eventually rises a bit again and the pain disappears again. We are all different and it depends how hypo you were to start with? My TSH wasn't very high so mine swings quite a bit.

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