Exhausted!: I have been on levothyroxine for appx... - Thyroid UK

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Exhausted!

Vix22 profile image
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I have been on levothyroxine for appx 4 years. For the last 8 months i have felt constantly tired - overwhelmingly so on occasions. I was diagnosed with being vit b12 deficient in october and have injections niw but these have made no difference. All my other blood tests have come back normal. I struggle to function at work and i feel a ‘fog’ almost constantly. Any advice would be gratefully received.

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Vix22
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Do you have any recent blood test results and ranges you can add

How much Levothyroxine are you currently taking?

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 Thyroid antibodies are raised

How often are your B12 injections

We often need to self supplement a good quality daily vitamin B complex as well to keep all B vitamins in balance, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Folate is often too low

Vitamin D and ferritin too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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 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 .

Vix22 profile image
Vix22 in reply toSlowDragon

Hello slowdragon, thank you for your prompt answer. I don’t have any recent blood tests but my doctors refuse to test t3, my t4 was in the upper range and my tsh was less than 0.03. In September they increased my levothyroxine from 100mcg to 125mcg (which was my previous dose before they decreased it, shortly after this I became symptomatic). I take it first thing in the morning with water and keep an empty stomach for hours.

My B12 injections are once every 12 weeks.

I was taking B12 supplements and vit d but stopped as I felt no different - I will resume....

Prior to the decreased dose of levothyroxine I was full of life! I thought returning to the original dose would have sorted it.

They have tested my cortisol and iron which are apparently in range.

I’m tired every morning as soon as I wake up and can’t concentrate like I used to - I can’t sleep during the day despite feeling like this.

I appreciate any further advise as the doctors (I’m sure) think it’s all in my head! In fact, at the last visit I was advised they wanted to put me on amitriptaline at night to see if that would resolve it.

Vix22 profile image
Vix22 in reply toVix22

I have hashimotos and when I was first diagnosed I was tested for antibodies which were in excess of 6500

SlowDragon profile image
SlowDragonAdministrator in reply toVix22

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

GP's will fiddle with dose....then it can take ages to resolve issues after being under medicated

You low B12 was likely due to dose reduction

Strongly recommend getting FULL Thyroid and vitamin testing to see exactly where you are now

Common for conversion of FT4 to FT3 to get worse the longer we are on Levothyroxine, and also after menopause (if this applies to you)

Just testing TSH and FT4 is completely inadequate

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Do you always get same brand of Levothyroxine?

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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, but some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Come back with new post once you get results and ranges

If going to change brand and/or timing of taking Levothyroxine from morning to evening you probably need to retest thyroid levels 6-8 weeks later

Vix22 profile image
Vix22 in reply toSlowDragon

Sometimes the brand of Levo changes but not recently. I’m going to start going gluten free and start taking apple cider vinegar again. My stomach is very noisy most of the time so hopefully this will all help!

SlowDragon profile image
SlowDragonAdministrator in reply toVix22

Always try to stay on same brand of Levothyroxine. They are not bio equivalent.

Each time brand changes it can be a small dose change

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