Should I reduce or carry on? Can you advise ple... - Thyroid UK

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Should I reduce or carry on? Can you advise please?

Elle137 profile image
Elle137
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Good morning, was taking 25 levo for 2 weeks (teva split in 2 although told to start on 50) up to 50 some 10 day's ago & I'm getting "symptoms back" brain fog, aches & pains etc.....but this time I'm hot? In bouts like hot flushes but not the same?! My palms are red & hot? I have read "that it can get worse before it gets better" I have bloods on 5th September. Thank you very much 😊 x

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Elle137
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SlowDragon profile image
SlowDragonAdministrator

perhaps drop back to 25mcg on alternate days with 50mcg - averaging at 37.5mcg

Or cut tablets to take 37.5mcg daily

Elle137 profile image
Elle137 in reply to SlowDragon

Thank you very much for replying, I appreciate it, I'll try 37.5 a day 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Elle137

Retest after 6-8 weeks on same dose and same brand levothyroxine

Shellybrown profile image
Shellybrown

Hi Elle,

It may help you to look into more detail so you can get a more robust understanding.

You will have a few things to manage and look at, all at the same time.

Basically your body sends a signal to your thyroid, to ask your thyroid to release hormones to be released. This signal is called TSH

When your thyroid not producing enough thyroid hormones, your brain sends more and more TSH, increasing the amount each time when it gets no response from it's demand to increase levels. So it kinda ends up shouting.. πŸ˜… My last untreated shout was 49. 0 and it can go much higher than that too.

Your doc says oh your TSH is too high (shouting to your thyroid) lets give you levo.

Levo gives you T4 only. This is digested and assimilated in your liver and muscles too make T3

T3 is the most active form and gives you energy, a normal body temp and most other things you need.

When you take your dose to start, you need at least 6 - 8 WEEKS to bring your levels up. These are the ones that are measured in your blood tests. They are basically T4 plusT3

Now here's the messy bit.

Your body is still making a little T4 and T3 normally..

BUT! when you take T4 in tablet form it knocks out the TSH signal

This means your body says oh l don't need to make as much T4 T3..

BUT!

Levo takes 6 to 8 weeks to build in your body. It's like a train, it takes a while to get up to speed (and it takes a few miles to stop)

So as you are building your dose, you will keep knocking out your signal, leaving you without

1/ the little T4 T3 you were making naturally yourself

2/ AND without the levo T4 T3 levels because you haven't been taking it long enough to get them up! So you end up more hypo!! Before you get better.

When you don't have the levels built up, each new increase will knock you back a bit so you need to stick with it and wait for them to rise and build. It's hard hun, but stick with building your dose and then get your blood done to see where your numbers are and how you are feeling.

You may see some improvement after about 3 weeks which will continue to build.

So don't drop, wait for your levels to build, test (go private, much better than nhs who will only give you your tsh)

Your warm red hands are the T3 flushing into your system. Once your levels are good this reaction will wear off to warm hands and then little reaction.

Now, you will also have some side effects as your body adapts, stick with it and these will wear off as your body gets used to synthetic T4

Lots of things can affect how effective your levo is.

Stuff like not eating half an hour to a full hour after taking it and other things such as caffiene.

There are also basic levels in your body that need to be good, like your thiamine, vit D3, folate, selenium etc

These are needed to convert your levo into T3

Also take into account that a rise in dose may make you feel better the day after because you've been able to assimimate T3 from it but may still make you feel hypo in the evening as that wears off and the levels and reserves you are building are not yet built.

If you have stomach problems, on a good day you may feel better as you absorb better and on a bad tummy day you may feel more hypo as your bad tum hasn't absorbed the levo very well, leaving little or no T4 to reach your liver.

I've been on levo for 40 years. I'm always learning too. So if anyone has better idea s or can add, lm always willing to listen. That's one of the keys, really get to know how your system works and then work with it.

Have a look into whether you have antibodies too to your thyoid as these can fluctuate and affect the efficiency of the levo.

There are many more things to consider, but hopefully you will find your way. Don't be affraid to keep asking and exploring.

Medichecks are very good for private tests that can be done at home and 60 quid on top of the tests will give you a nurse at your home to collect the blood.

All the best hun 😊xx

Elle137 profile image
Elle137 in reply to Shellybrown

Thank you so so much πŸ™‚ I understand it more now after your fabulous explanation, so much more informative than the private endocrinologist I saw, I'm incredibly grateful to this forum & you for your reply....I'm confident now in persevering with building the levo, I'll push through these aches & pains (back is killing me which started this whole journey!) I am confirmed as hashimoto's by TPO's & ultrasound, unfortunately πŸ˜• I also have symptoms of TED, which is worrisome but new GP fortunately has "an interest" in endocrinology (having spent 6 months in St Barts London) so fully understands one size does not fit all!! It's draining emotionally fighting doctors & draining financially going outside the NHS! I am using medichecks (great service) & taking all the recommended supplements (found all that on here, nothing from previous GP & endocrinologist) so hopeful my vitamin & iron levels are ok? Bloods (NHS) September. Thank you again, and all the very best to you too xx

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