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)
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
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 .
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
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?
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
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
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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