Levothyroxine side effects: I’m new here and... - Thyroid UK

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Levothyroxine side effects

Aniba profile image
16 Replies

I’m new here and would appreciate advice

Had previous side effects had to come off 25mg

Advise to split 25mg dose am /pm after 12 days I’m experiencing throat pain, croaky voice and cold symptoms

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Aniba profile image
Aniba
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16 Replies
SeasideSusie profile image
SeasideSusieRemembering

AnibaWhat brand(s) of Levo have you been given?

Aniba profile image
Aniba

TEVA

SeasideSusie profile image
SeasideSusieRemembering in reply toAniba

Aniba

Teva brand causes lots of side effects for many people, although there are some who do well on it.

Are you lactose intolerant? Teva is a lactose free brand and they use Mannitol instead of lactose and this is thought to be the cause of the problem.

If not lactose intolerant ask for a different brand.

If you are lactose intolerant there are other lactose free brands.

Aniba profile image
Aniba in reply toSeasideSusie

Hi Seaside SusieI do suffer from IBS and have some kind of lactose intolerance and just checked the FODMAP guide and Mannitol is mentioned, will call GP and try and get another brand.

Thank you

SeasideSusie profile image
SeasideSusieRemembering in reply toAniba

Aniba

You could ask the pharmacy to mark your record there to never give you Teva due to adverse reaction. Once you find a brand that suits, either ask GP to name this on your prescription or ask pharmacy to always dispense that brand.

Also, Northstar 25mcg is Teva so avoid that too. Other Northstar dose tablets are made by Accord so no problem with those.

As for the Teva, please do a yellow card report :

yellowcard.mhra.gov.uk/

Aniba profile image
Aniba in reply toSeasideSusie

Thank you

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Do you have your test results from BEFORE starting on levothyroxine ...to give indication of how hypothyroid you are

You are legally entitled to printed copies of your blood test results and ranges.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies if not been tested yet

Improving low vitamin levels can make it easier to tolerate levothyroxine

Standard starter dose of levothyroxine is 50mcg (unless over 60)

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

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)

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

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance and/or lactose intolerance often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...

important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

JAmanda profile image
JAmanda

Whenever I got symptoms it was because the dose was too low not too high - it was like my body was calling for a proper dose.

SlowDragon profile image
SlowDragonAdministrator in reply toJAmanda

Agree absolutely.....so often we see people struggling to tolerate as started or left on ludicrously small dose

Levothyroxine doesn’t “top up” failing thyroid it replaces it .....minimum of 50mcg as starter dose

Aniba profile image
Aniba in reply toSlowDragon

Thank you for the reply,I currently take Vitamin D and saw a dietician who mentioned that I was non celiac gluten sensitive

I do have a lump at the side of my neck seen ENT consultant everything looks fine with the camera waiting for ultra sound scan and my neck feels swollen, is it normal to have thyroid pain? I must admit I have noticed I’m getting tired easily, its taken months to get this sorted and I have learnt so much being on this site thank you

SlowDragon profile image
SlowDragonAdministrator in reply toAniba

Gluten is linked to leaky gut rather than typical gluten intolerance

The ONLY way to know if you would benefit is to try it

Redditch profile image
Redditch

these are NOT NOT NOT side effects of levothyroxine these are symptoms of hypthyroidism, do NOT split your dose and get back to you GP and beg for a fast increase in medication 25 was NEVER enough to help anyone, they always put it up gently but there are almost no side effects it either works, because you are able to convert the synthetic t4 into the t3 that your body needs or it doesn't because you can't.

Aniba profile image
Aniba in reply toRedditch

Thank you for replying thats eased my mindUnfortunately I do not have a copy of my results, but when I got tested again they had got worse, the GP wrote a letter to the Endocrinologist and explained the situation ( side effects) and said I had Subclinical hypothyroidism. It was the consultant who suggested split the dose or have try a different formulation including Liquid. It looks as though my GP mentioned T3 but this is not recommended

shaws profile image
shawsAdministrator in reply toAniba

Unless you are very frail with a heart disease would a starting dose be lower than 50mcg of levothyroxine. Doctors seem to be the last people to know or understand how to treat a patient who has hypothyroidism.

SlowDragon profile image
SlowDragonAdministrator in reply toAniba

Obviously results would get worse on such a tiny dose

Levothyroxine doesn’t “top up “ failing thyroid...it replaces it

Typical full replacement dose is 1.6mcg per kilo of your weight. Unless EXTREMELY petite that’s likely at least 100mcg levothyroxine

Standard starter dose of levothyroxine is 50mcg and dose increased up as fast as tolerated

Bloods should be retested 6-8 weeks after each dose increase

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

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

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Sadly many medics seem to be unaware of guidelines

SlowDragon profile image
SlowDragonAdministrator in reply toAniba

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

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