Levothyroxine no longer effective: Hi Folks , I'm... - Thyroid UK

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Levothyroxine no longer effective

Maryam_1 profile image
35 Replies

Hi Folks , I'm struggling. My medication is no longer working.

my Levothyroxine 100mg was working -

from November 2022 TSH 0.49 shot up to TSH 7.18. February 2024 safe regions 0.27-4.2.

I have no clue how this can change so dramatically I need some kind of explanation.

Can someone help me.

I would prefer not to not keep upping the medication but I need information.

Thank so much

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Maryam_1 profile image
Maryam_1
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35 Replies
Shellybrown profile image
Shellybrown

Do you have hashi's? If your antibodies have increased or if your thyroid problem is flaring, you may need to increase the dose.I'm not an expert and there will be many better answers on here than mine xx

Maryam_1 profile image
Maryam_1 in reply toShellybrown

Thank you - I await some information - I am eating healthily in general and wondering what caused this and wonder if it drop in estrogen and the thyroid and estrogen connection. I am on HRT.

Billy2023 profile image
Billy2023 in reply toMaryam_1

I really worry about HRT and thyriod. Is there much medical evidence regarding this? I know when I initially went on hrt I felt great, 3 months later felt awful. All pointing to my underactive thyroid flaring up. I went down on my hrt and even though I still have classic menopause symptoms I think I rather that that underactive thyroid

Maryam_1 profile image
Maryam_1 in reply toShellybrown

yeh looks like im hashi's

SlowDragon profile image
SlowDragonAdministrator

well you probably just need higher dose levothyroxine

How long have you been on 100mcg

Do you always get same brand levothyroxine at each prescription

Approximately how much do you weigh in kilo

Levothyroxine isn’t a medication, it’s replacement thyroid hormone

Important to be on high enough dose

Guidelines on EVENTUAL dose levothyroxine by weight is approximately 1.6mcg per kilo of your weight per day

Maryam_1 profile image
Maryam_1 in reply toSlowDragon

hey for about 4 years 100mg prior to that 5 yaers 50then 75mg

SlowDragon profile image
SlowDragonAdministrator in reply toMaryam_1

100mcg isn’t very high dose

Which brand levothyroxine are you taking

Get FULL thyroid and vitamin testing

Either test now

Or increase by 25mcg and retest in 8 weeks

helvella profile image
helvellaAdministrator

Are you no longer taking any T3?

Maryam_1 profile image
Maryam_1

I didnt take T3 in the end

Maryam_1 profile image
Maryam_1

I didnt take T3 in the end - should i start taking it

SlowDragon profile image
SlowDragonAdministrator in reply toMaryam_1

Not without getting full thyroid and vitamin testing done

Shellybrown profile image
Shellybrown in reply toMaryam_1

Remember T3 can feel like rocket fuel if you are hypo so keep that in mind should you try it.

Also other things like magnesium and other supplements can affect absorption of levo. And always take it on an empty tum and don't eat for an hour after.

Make sure your bowels are regular too as that can affect absorption too x

I would have thought hrt would have helped not stopped it working xx

Maryam_1 profile image
Maryam_1 in reply toShellybrown

Yes i do all that - take it on an empty stomach wait an hour to eat - not taking magnesium but i should.

greygoose profile image
greygoose

Is TSH all they tested? If so, you need full thyroid testing to see what's going on:

TSH

FT4

FT3

TPO antibodies

Tg antibodies.

It could be assay error, they do happen. But to know that you need to see FT4 and FT3 results. If they haven't dropped then the high TSH is probably a mistake.

Maryam_1 profile image
Maryam_1 in reply togreygoose

It isn't an error - Im not feeling well - the meds are no longer working

TSH 7.18 previous- 0.29

greygoose profile image
greygoose in reply toMaryam_1

ok, but TSH doesn't make you feel anything. You need your Frees tested to know what's going on. There could be all sorts of reasons why you're not feeling well.

Levo - 'meds' - is a hormone. Hormones can't stop working, they're not like drugs. But, you could have developed an absorption problem, or your conversion could have got worse. But you can't know about these things without getting FT4/3 tested. Just tested TSH gives you little to no information. No-one can give you any information or help without more details.

Maryam_1 profile image
Maryam_1 in reply togreygoose

I meant my T4 - they aresults of my free T4

greygoose profile image
greygoose in reply toMaryam_1

Sorry, I don't understand. Your FT4 was 7.18 previous- 0.29? Then it's gone up and that's a good thing.

Maryam_1 profile image
Maryam_1 in reply togreygoose

yes i will with medichecks blood test

Maryam_1 profile image
Maryam_1 in reply togreygoose

but also - we have an issue and i have to find a solution

greygoose profile image
greygoose in reply toMaryam_1

Of course you do. But before finding a solution, one has to be clear what the issue is. TSH or FT4?

Maryam_1 profile image
Maryam_1 in reply togreygoose

yes very true

Maryam_1 profile image
Maryam_1

I also don't feel well - stress aches too heachaches brain fog, palpitations , it goes on - have you tried T3?

Apples profile image
Apples

Hi, I am in a similar situation, I would suggest getting the full test. If nothing else it will give you information to take to your Dr.

Also the advice here is to optimise your vitamins, at the moment I am doing this and saving for a full thyroid and vitamin test.

By weight I am overdosed but my TSH is too high.

Good luck,

Maryam_1 profile image
Maryam_1 in reply toApples

Right I am check my estrogen levels too - get zinc supplements , magnesium - I am already on vit D b12. I will get selenium.

Maryam_1 profile image
Maryam_1 in reply toApples

Did you up your levothyroxine - how are you responding to this chnage.

Maryam_1 profile image
Maryam_1

your on a very high dose of Levothyroxine - have you tried T3?

Jaydee1507 profile image
Jaydee1507Administrator

Do start your own post for personalised recommendations.

A high TSH with good levels of FT4 suggests erratic dosing or taking Levo with something thats affecting its absorption such as tea or coffee or food.

Maryam_1 profile image
Maryam_1 in reply toJaydee1507

Yes - Im not going to have tea or coffee with it again

Maryam_1 profile image
Maryam_1 in reply toJaydee1507

But the change is really extreme

Apples profile image
Apples

yes, I was on 125 and they said to alternate day 125 and 150, my surgery would not retest for 6 months (!!) having waited my TSH is still too high and they have upped my dose to 150 (at 61kilo this is over for my weight) I had a wobbly at them and will be restested in a few weeks.

Like you my concern is why has this changed after years of just minor ups and downs. I am working on having changed the time I took them or a change in my vitamins. So I am taking supplements and have reverted to taking them in the middle of the night when I need the loo. This is a pain as I then cannot get back to sleep, oddly after I had switched to last thing at night this was not an issue.

Maryam_1 profile image
Maryam_1 in reply toApples

I'm not waiting months. I wonder if the formula of the levothyroxine has changed - so you say its working since your taking in the middle of the night? - i will try this

Apples profile image
Apples in reply toMaryam_1

I don’t know if it is working yet as I am waiting for my next test.

Changing the time I took it was the only change I made before my TSH changed,

I originally took it at about 4am, but changed to about 11pm (after only drinking water in the previous 3 hours..no food, no caffeine)

Both my cousins did the same with no change in their TSH so I feel I am grasping at straws but am willing to give it a go in case it explains what is happening to me.

Maryam_1 profile image
Maryam_1 in reply toApples

I'll let you know how i get on and fill you in with my process and what i'll be doing - let me know if it improves. we have to try.

Maryam_1 profile image
Maryam_1

visit an endocrinrologist privately - they provide a list that may help here at health unlocked

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