Stopping my levo: I am stopping my levo I feel... - Thyroid UK

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Stopping my levo

Liz856 profile image
20 Replies

I am stopping my levo I feel better when I do not take it. I was diagnosed with hypothyroid in 2013 and meant to be taking 100mcg and my symptoms of hypothyroidism get worse when I do take it. Please can anyone help.

*TSH 9.62 mIU/L (0.2 - 4.2)

*FREE T4 10.7 pmol/L (12.0 - 22.0)

Thyroid antibodies last done 2017 (New NHS GP practice)

*THYROID PEROXIDASE ANTIBODIES 387 IU/mL (<34)

Thyroid antibodies done 2015 (Private)

*THYROGLOBULIN ANTIBODIES 285 IU/mL (0 - 115 negative)

*THYROID PEROXIDASE ANTIBODIES 78.3 IU/mL (0 - 34)

Thyroid antibodies done with different NHS GP practice 2015

*THYROID PEROXIDASE ANTIBODY 277 IU/mL (<34)

Thyroid antibodies done with different NHS GP practice 2013

*ANTI TPO ANTIBODIES 44 IU/mL (<34)

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Liz856 profile image
Liz856
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SlowDragon profile image
SlowDragonAdministrator

It's a common phenomenon that stopping Levothyroxine can TEMPORARILY seem to give improvement

But if you are hypothyroid it's extremely rare to recover (and potentially very dangerous) to stop a totally essential hormone. We need thyroid hormones for every single cell in the body

Getting on the RIGHT dose and getting vitamins at correct levels can significantly improve symptoms

Do you have any recent blood test results and ranges you can add. Members can advise on what needs improving

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

Have you ever had TPO and TG thyroid antibodies tested?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose 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)

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 .

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_...

Liz856 profile image
Liz856 in reply toSlowDragon

Thank you I will post the ones I have when I was off levo for 6 weeks

Liz856 profile image
Liz856 in reply toSlowDragon

I have added TSH FT4 TPO antibodies to my post

Liz856 profile image
Liz856

Symptoms list -

Tremor/shaking (?)

Feeling cold

Headaches

Constipation

Cold feet

Dry skin

Joint pain

Tiredness

Heavy periods

Splitting nails

Rashes on face and body (?)

Weakness in legs and back

Muscle twitching

Loss of libido

Loss of appetite

Sugar cravings (?)

Salt cravings (?)

Increased thirst (?)

The ones I have put (?) by are ones that I thought are hyperthyroidism and have been on and off

SlowDragon profile image
SlowDragonAdministrator in reply toLiz856

Your results show you are extremely hypothyroid

High antibodies confirm you have autoimmune thyroid disease also called Hashimoto's

Low Vitamin levels are EXTREMELY common with Hashimoto's

It's as much a disease of the gut as the thyroid

Ask GP to test vitamin D, folate, ferritin and B12 plus coeliac blood test too

Always get actual results and ranges. Add them here if you have any

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

Low vitamin levels affect Thyroid hormone working

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

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

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

Try the same with dairy free diet

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

restartmed.com/hashimotos-g...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

All your symptoms are likely due to being extremely hypothyroid

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many o us need it well under 1) an FT4 is in top third of range and FT3 at least half way in range

Vitamins need to be optimal an frequently need regular and ongoing supplements to maintain at good levels

Do you have results and ranges from when on 100mc Levothyroxine?

Liz856 profile image
Liz856 in reply toSlowDragon

Thanks yes on 100mcg levothyroxine

*TSH 0.02 (0.2 - 4.2)

FREE T4 22 (12.0 - 22.0)

FREE T3 4.1 (3.1 - 6.8)

But on a dose of 175mcg levothyroxine

TSH 1.20 (0.2 - 4.2)

FREE T4 19.3 (12.0 - 22.0)

FREE T3 4.0 (3.1 - 6.8)

I don't get why they are different

SlowDragon profile image
SlowDragonAdministrator in reply toLiz856

Because you have Hashimoto's and low vitamin levels and highly likely gluten intolerant, if not coeliac

Getting vitamins optimal is essential

Coeliac blood test before starting on strictly gluten free diet

You may need to try dairy free too

danym profile image
danym in reply toLiz856

do you mean a dose of 75 mcg?

Liz856 profile image
Liz856 in reply todanym

No. 175mcg

danym profile image
danym in reply toLiz856

very odd that your tsh is higher on the bigger dose, did the dr say why?

Liz856 profile image
Liz856 in reply todanym

The endo at the time said he didn’t understand why this has happened so I wasn’t really given an explanation thanks

danym profile image
danym in reply toLiz856

so what dose are you taking now? or did you stop completely?

Liz856 profile image
Liz856 in reply todanym

I stopped completely and now on 25mcg

danym profile image
danym in reply toLiz856

wow, how are you feeling on that dose?

Liz856 profile image
Liz856 in reply todanym

Hi no change in symptoms yet

Liz856 profile image
Liz856

*FERRITIN 8 ng/L (15 - 150)

*FOLATE 2.33 ng/L (2.50 - 19.50)

VITAMIN B12 233 pg/L (190 - 900)

*VITAMIN D TOTAL 24.9 nmol/L

(<25 severe vitamin D deficiency, 25 - 50 vitamin D deficiency, 50 - 75 vitamin D suboptimal, >75 adequate)

SlowDragon profile image
SlowDragonAdministrator in reply toLiz856

When were these done?

On no Levo

Or on 100mcg or 17mcg

What is GP prescribing

What supplements are you currently taking

Liz856 profile image
Liz856 in reply toSlowDragon

Thanks these were done in Dec 2018 when I was taking levo and I supplement for them. I take 3 iron tablets a day since 2016 5mg folic acid since 2017 800iu vitamin D since 2012 and nothing for B12

SlowDragon profile image
SlowDragonAdministrator in reply toLiz856

Al this strongly suggests coeliac or gluten intolerance

So you need urgent referral to haematology for investigation into ongoing low iron

Likely to need iron infusion

Vitamin D you need LOADING dose- see these

Local CCG guidelines

That's 5000iu per day for 8 weeks or 7000iu per day for 6 weeks and then retested

clinox.info/clinical-suppor...

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there. This is likely to be at least 2000iu per day

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

sciencedaily.com/releases/2...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

B12 and folate are too low . Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

You may also need sublingual B12 or B12 mouth spray

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. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

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

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

endocrinenews.endocrine.org...

Vitamins MUST be optimal for thyroid hormones to work

fp123 profile image
fp123

Hi Liz,

I hope you are on the up and closer to feeling better. I was just reading your post as it mentioned thyroid antibodies. I am on my own path to trying to understand and regulate my own thyroid issues (graves thyroid behaviour and elevated TbAb's/ Hashimotos. There is a wealth of information there to start looking at from posted links and advice so thank you . Have only just recently started to go gluten free. Thanks to all the advisors there, I will start digging.

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