Should I stop taking Levothyroxine?: Hello! Just... - Thyroid UK

Thyroid UK

125,738 members147,351 posts

Should I stop taking Levothyroxine?

Superdogcat24 profile image

Hello! Just wondering if its ok to stop taking Levothyroxine.I was on 25mcg for 6 weeks then increased to 50mcg for past 3 weeks. Blood test result taken 12th Oct after 2 weeks of increase to 50 mcg says,' TSH - 1 miu/L ( 0.20 - 4.00) Ideal T4 replacement therapy indicated by TSH 0.2 - 2.0 miu/L. The thing is I'm still not feeling any better and I'm thinking its probably my Long Covid that is still causing my symptoms. Im 63 yrs old and weigh 8.5 st. My question - is it ok to stop levothyroxine abruptly or do I have to titrate down? Will my body resume production of natural thyroid hormone like it was before I started the medication? My TPO antibodies were 367 in May and tested privately again in Sept were 131 .TSH has fluctuated between 7 in Oct 2019 to 3.1 last Oct and 5 to 3.7 this year.

14 Replies

If you stop taking your levo, your TSH will rise again. But, more importantly, your FT4 and FT3, the thyroid hormones, will drop making you very ill.

Thyroid hormone replacement - levo - is for life. You have Autoimmune Thyroiditis - aka Hashi's - which is a disease where the immune system slowly destroys the thyroid, meaning that is capable of making less and less hormone. You cannot live without thyroid hormone.

The reason you were put on levo in the first place was because you were hypothyroid due to the dammage done to your thyroid by the immune system. Levo is not a treatment for the thyroid. It doesn't not repair the thyroid and make it capable of working correctly again. Levo is thyroid hormone replacement - T4 - which replaces the hormone your thyroid can no-longer make enough of to make you well. You cannot come off it without risking your health.

If levo is not helping you feel better, it is either because you are not taking enough of it (how much are you taking?) OR you are not absorbing it correctly OR your body cannot convert the T4 - basically a storage hormone - to the active T3.

To find out which of these problems it is, you need full thyroid testing:

TSH

FT4

FT3

vit D

vit B12

folate

ferritin

Doubtful your doctor will ever do all of these, if he believes that a TSH test alone tells him everything. But, he is wrong. So, you could get them done privately. Information on private testing here:

thyroiduk.org/help-and-supp...

If you can get all these done, it will tell us what should happen next to make you well.

:)

Thank you greygoose for your reply. I had a blood test in September with Blue Horizon my TSH was 3.70 (0.27 - 4.20) T4 total : 74.3 ( 66 - 181) Free T4 : 14.3 ( 12.0 - 22.0) Free T3 :4.23 (3.1 - 6.8 ) This was after being on 25mcg for 3 weeks. Vit D was 102, B12: 555, Folate 29.50, Ferritin: 89.9. I will take your advice and keep taking the Levothyroxine, need to speak to Dr anyway to get another prescription.

So, you are under-medicated. TSH should come down to at least 1, possibly under.

T4 total is not a very useful test.

Free T4 is only 23% through the range - not even euthyroid level, and hypos need it more like 80% through the range.

FT3 is only 30.54%. You'd probably need that at at least 65% to feel well.

These are only approximate percentages not something to aim for. What you need to aim for is the point at which you feel well, whatever that might be, even if it's slightly over-range.

So, to start with, you need an increase of 25 mcg levo, and then wait for at least six weeks before getting retested. How do you do your blood draw? Do you do it early morning - before 9 am - after fasting over night? Do you leave a gap of 24 hours between your last dose of levo and the blood draw?

Your nutrients looks good. Are you taking any supplements?

Thank you, the blood test from GP last week was sent to me showing only the TSH level which is now 1 miu/L ( 0.20 - 4.00 ) Yes, the blood tests were done 24 hrs after last dose of Levo at 8am. I was taking vit D 3 10ug , B12 and folic acid, but I'm now taking a multivitamin Wellwoman 50+. I have a healthy diet which is gluten free.

Multivits are a very bad idea, for multiple reasons:

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.

*Vit C should be taken 2 hours away from B12 because it affects how the body uses B12.

*Never take magnesium/zinc/calcium at the same time as they affect the absorption of each other.

*Take zinc and copper separately as zinc affects the absorption of copper.

*Vits A/D/E/K are all fat soluble vitamins, and if taken together can compete for the source of fat. They are best taken away from each other.

* The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D. :)

Oh, I didn't realise about iron etc so will scrap the multi vits and get separate ones , leaving out the ones I don't really need. I will get a vitamin blood test again and hopefully will now have a better understanding of which ones to take.Thanks again.

You're welcome. :) If you need any help with what to take when, don't hesitate to ask.

Thank you so much

I can only agree with what greygoose has said. Levo does not heal the thyroid, it replaces the hormones you can no longer make enough of. Most people with hypothyroidism will have to take it for life and that includes people with Hashimoto´s who have often had extensive damage done to their thyroid gland by the time they are diagnosed. Why would you want to go off levo when you have autoimmune hypothyroidism and will need levo for life? You will only feel worse when your thyroid hormone levels drop further.

From what you say, it would seem you have only had your TSH tested, not your free T4 and free T3. You really need to have them tested in order to know how much of the levo you are absorbing and converting. If your free T3 levels are low, you will remain symptomatic regardless of your TSH.

You really shouldn´t go off levo, but instead try to find the reason you are not feeling better on it. My bet is you are still under medicated and need to increase levo.50 mcg is only a starter dose. If your doctor won´t order more tests, please consider ordering private tests.

Only testing the TSH is completely inaccurate!!!

Superdogcat24 profile image
Superdogcat24 in reply to

Thank you PurpleCat71, I wasn't sure if my levels would just revert back to how I was before I started taking the Levothyroxine, which according to my GP wasn't in the range that they normally treat so, because Ive had symptoms very like the ones you get with hypo , I asked if it could possibly be m6 thyroid.He told me they can prescribe Levothyroxine if you have symptoms but he told me to take 25 mcg then uf I still wasn't feeling well to increase to 50mcg after 3 weeks then after that if I was no better to just stop taking them. I havent had much information at all from any if my GPs, its being very difficult.But thank you , I will take on board what you've said.Thank goodness for this group.

in reply to Superdogcat24

Do you know what your levels looked like before you added 25 mcg of levo? Because they don´t look good on that tiny dose, so my guess is your TSH was even higher and your free Ts even lower before levo. So hypo, especially if symptomatic.Once you take levo, even a tiny dose, your pituitary gland will sense the extra thyroid hormone and lower TSH producction which in turn will lower free T4 (and to some extent FT3). This is called the negative feedback loop. So, there will be even less FT4 available for conversion. That is why we are supposed to increase levo every 6-8 weeks until the TSH is in the lower end of range.

You cannot top up your own thyroid hormone production; you have to replace it. 50 mcg is a normal starter dose in people under 60-65 without heart disease. So 25 mcg would be a starter dose in children and the elderly or those with heart conditions. But 50 mcg is highly unlikely to be a sufficient full replacement dose, especially since you have Hashimoto´s which will cause thyroid gland failure.

So, your doctor started you on levo without checking your TSH and free Ts first? I don´t think you should let him tell you that if 50 mcg of levo do not work out for you then you should just go off it. You have tested positive for Hashimoto´s so your symptoms are undoubtedly thyroid-related given your lab results. You need more levo, not less.

Superdogcat24 profile image
Superdogcat24 in reply to

Thank you, my last blood results from GP were in May when all I was told was the TSH result of 5.7, and T4 was 13.7 so he must have looked at that result as he prescribed Levothyroxine in late June but I didnt start taking it until Aug, because I wasn't certain what to do for the best as I wasn't sure that it was the thyroid that was causing my symptoms or Long Covid.

in reply to Superdogcat24

Well, I am not saying you are not suffering from long Covid as well, making matters even worse, but your TSH and free T4 definitely point to a thyroid problem.

Superdogcat24 profile image
Superdogcat24 in reply to

Yes, it does look that way, thanks again for all the info.

You may also like...