Levothyroxine no longer effective

[Maryam_1]

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

[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 in reply to Shellybrown]

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 in reply to Maryam_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 in reply to Shellybrown]

yeh looks like im hashi's

[SlowDragon Administrator]

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 in reply to SlowDragon]

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

[SlowDragon Administrator in reply to Maryam_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 Administrator Thyroid UK]

Are you no longer taking any T3?

[Maryam_1]

I didnt take T3 in the end

[Maryam_1]

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

[SlowDragon Administrator in reply to Maryam_1]

Not without getting full thyroid and vitamin testing done

[Shellybrown in reply to Maryam_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 in reply to Shellybrown]

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

[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 in reply to greygoose]

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

TSH 7.18 previous- 0.29

[greygoose in reply to Maryam_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 in reply to greygoose]

I meant my T4 - they aresults of my free T4

[greygoose in reply to Maryam_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 in reply to greygoose]

yes i will with medichecks blood test

[Maryam_1 in reply to greygoose]

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

[greygoose in reply to Maryam_1]

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

[Maryam_1 in reply to greygoose]

yes very true

[Maryam_1]

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

[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 in reply to Apples]

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 in reply to Apples]

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

[Maryam_1]

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

[Jaydee1507 Administrator]

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 in reply to Jaydee1507]

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

[Maryam_1 in reply to Jaydee1507]

But the change is really extreme

[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 in reply to Apples]

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 in reply to Maryam_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 in reply to Apples]

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]

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