Started Levothyroxine 25mg on Sunday and I feel *awful*

[Moomincoffee]

Hello

I started taking Levothyroxine on Sunday. Low dose, 25mg, Wockhardt. I had a bit of an upset stomach by Monday, same Tuesday. By the time I left work on Wednesday I felt pretty rough, headache, nausea, diarrhoea, came home and slept. Felt even worse yesterday, with stomach pains. Don't feel quite as bad today although I do now have a sore throat.

I'm a bit put-out as I wasn't unwell with the underactive thyroid so I've gone from being well to feeling rough on the meds which are meant to help.

I have no idea if this is to be expected from starting this med or is it a co-incidence and I'm not well with something else? The NHS website indicates side-effects don't happen as it 'just replaces the hormone your body isn't making' but elsewhere lists side effects as upset stomach, nausea etc. Plus I had a look around on here and can see it's not as straightforward for a lot of people as the NHS site suggests.

I guess I'm asking if I put up with it and wait for it to pass or flag to GP (or call pharmacist for advice?). Is it normal to feel terrible for a few days when you introduce/change dose?!

Thank you in advance

[SlowDragon Administrator]

Welcome to the forum

Do you know what your thyroid results were that caused GP to start you on levothyroxine

Levothyroxine is an extremely fussy hormone and should always be taken on an 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 perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

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

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

standard starter dose levothyroxine is 50mcg …..unless over 65 years old

Likely to be ready for next dose increase after next test

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

Important to test vitamin D, folate, ferritin and B12 plus thyroid antibodies…..if these not been tested yet

[Moomincoffee in reply to SlowDragon]

Thank you. I do not have blood test results and take the levo in the morning with water (and nothing else for over an hour cos i have been felling so bad).

[SlowDragon Administrator in reply to Moomincoffee]

you need to keep good records yourself of results before starting, and after each blood test

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

patients-association.org.uk...

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

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

plus both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year

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 (Hashimoto’s or Ord’s thyroiditis)

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)

Do all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[SlowDragon Administrator in reply to Moomincoffee]

You could try taking at bedtime?

You’re not on dairy free diet or lactose intolerant are you?

Wockhardt is usually well tolerated…..unless you need lactose free levothyroxine

[Hedgeree]

Hi Moomincoffee,

I only started with Levo in August 2022 when I tried to take Wockhardt but it caused me lots of digestive issues due to the lactose in it.

I originally took that as my pharmacist couldn't get anything else lactose free. Unfortunately it did cause me many issues.

My symptoms were nausea, stomach cramps, loose bowels and excessive wind. Forgot about the bloating! So it could be the Wockhardt causing you issues.

Best wishes.

[Moomincoffee]

Thanks for all the info.

As far as I know I am not lactose intolerant - although if I eat cereal with milk for breakfast it makes me feel sick, I have milk in coffee and at other times with no issues - but my symptoms do sound like yours hedgeree so will look into it.

[Hedgeree in reply to Moomincoffee]

Hi Moomin,

You can also be sensitive to the proteins in milk and that can also cause similar symptoms to lactose intolerance (which is the sugar in milk)

Maybe it's to do with the amount of milk you're consuming? You can tolerate a small amount in coffee but having cereal with milk is just too much?

It's not pleasant! Hope you find answers soon.

[Moomincoffee]

Thank you Hedgeree. 🙏