Levothyroxine side effects: Hi all, I'd be... - Thyroid UK

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Levothyroxine side effects

Cariboudle profile image
9 Replies

Hi all,

I'd be curious to hear what side effects you have experienced upon starting Levothyroxine.

I'm only on day 4 of the 50mg starter dose, so I didn't expect to feel better yet. But I also feel like I'm having ALL THE SYMPTOMS and it's not pretty.. Let me know I'm not alone, huh?

Also, when did everything settle down for you? Was it, for example, a couple weeks after starting or did the symptoms only go away when you found the correct dose. Did you have new or recurring symptoms whenever your dose was altered?

I'm due to book another blood test in 6 weeks to see what the levels are doing and, presumably, so they can adjust the dose accordingly.

If it's useful, latest test results:

Free T4 - 13.5 pmol/L (11.0-22)

TSH - 5.44 mu/L (0.27-4.2)

Thyroid Peroxidase AB - 183 iu/mL (0-33)

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Cariboudle profile image
Cariboudle
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greygoose profile image
greygoose

It very often happens that symptoms get worse when starting thyroid hormone replacement, or even new symptoms appearing. But, they are not side-effects of levo, they are hypo symptoms. When they settle down/disappear is a very personel thing, and different for everyone. :)

Cariboudle profile image
Cariboudle in reply to greygoose

Thanks greygoose.

I didn't have any of this prior to starting meds but if this is just how underactive thyroid feels then there are people who feel this way all the time (and presumably spend their whole lives in the loo or in bed). Those people need a medal.

greygoose profile image
greygoose in reply to Cariboudle

Yes, I know what you mean. And nobody understands but us. :'(

SlowDragon profile image
SlowDragonAdministrator

High thyroid antibodies confirms autoimmune thyroid disease (hashimoto’s)

Have you managed to test vitamin D, folate, ferritin and B12 yet

GP should also test for coeliac disease at diagnosis of Hashimoto’s

Which brand of levothyroxine have you started on

Are you taking levothyroxine on empty stomach

Taking levothyroxine waking ….or bedtime?

Cariboudle profile image
Cariboudle in reply to SlowDragon

They didn't test vitamin D or ferritin, but they did folate and B12:

Serum B12 398 pg/mL (191-663)

Serum folate 3.1 ug/L (4.5-37.3)

GP didn't say anything about ceoliac. He told me to eat more greens to improve my folate level.

I'm taking Levothyroxin (Actavis brand) in the morning on a totally empty stomach with a sip of water. I don't eat or drink anything until an hour or so later.

SlowDragon profile image
SlowDragonAdministrator in reply to Cariboudle

Serum B12 398 pg/mL (191-663)

Serum folate 3.1 ug/L (4.5-37.3)

Folate is deficient

B12 low (but not low enough for GP to prescribe)

GP should have however prescribed folic acid

Week Before starting on a folate supplement….start daily B12

Do you have any Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate folate after a week

Then after 4-5 weeks change folate for a daily vitamin B complex

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply to Cariboudle

Vitamin D is almost always low with autoimmune diseases, especially Hashimoto’s

Vitamin D test

vitamindtest.org.uk

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Anthea55 profile image
Anthea55

You say you take your levo with a 'sip' of water. I suggest that you need to drink a bit more than that so that you wash the pill down. Have you looked at the patient information leaflet which should have come with the pills?

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