I'm going to ask more questions about levothyro... - Thyroid UK

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I'm going to ask more questions about levothyroxine

Th30m0us3 profile image
6 Replies

I came across this forum yesterday while browsing underactive thyroid. I've been on levothyroxine for more than a decade and in that time my dose has been increased and decreased several times and I'm currently on 125 mg daily . At first things were good but for a few months ive been feeling terrible . I feel exhausted midway through the day and my joints are so stiff. I've never been made aware of t3 or t4 (had to google an explanation) I didn't know I could ask my doctor for a breakdown of the results and it seems that I was taking the medication incorrectly ie, taking it with a drink of milk then having breakfast and a cup of tea straight after. It appears that milk and caffeine can reduce the effect of levothyroxine. As of this morning I'm going to try leaving half an hour between taking pills and breakfast to see if that makes any difference ( not sure it will as I've taken them the same way for years) then request another blood test .

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Th30m0us3
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6 Replies
fuchsia-pink profile image
fuchsia-pink

Welcome to the forum.

See if you can manage an hour between your tablets and breakfast - and get a copy of your historic results (and ranges) to see what has actually been tested before (possibly only TSH, which isn't nearly enough) and where in the range your results are. You are legally allowed your results without giving a reason - but if the doctor or receptionist wants to know why, it's usually easiest to say "for my records".

Ideally you should get a full set of tests done next time - TSH, free T4, free T3, thyroid antibodies (if not done before) and key nutrients - ferritin, folate, vit D and B12 - as your levo works best when these are optimised. They don't often do the full testing, but you may be lucky if you tell your doc that these are the tests recommended by Thyroid UK. Have as early a test in the morning as you can get, and take your previous levo 24 hours beforehand.

There is a wealth of knowledge on this forum - many of us have found it indispensable, particularly as GP training has time for only about 30 mins on thyroid. There is also, as you have discovered, quite a lot of jargon to get to grips with. If you look at "pinned posts" (in "posts" above) you will find helvella s excellent glossary, which is an easy way to getting to grips with the terminology. And there's lots of useful stuff on the main Thyroid UK site.

Good luck x

NWA6 profile image
NWA6

Welcome 🤗 isn’t crazy that we have this lifelong condtion and yet we’ve got to research everything ourselves. I’m mean what exactly is the role of a GP? They’re just pill pushers, no care or attention.

As soon as you can post your latest results and we’ll help you decipher them.

As far as Levo goes maybe you want to try and take them at night so you can carry on with your dietary habits?

Th30m0us3 profile image
Th30m0us3 in reply to NWA6

That might be the solution as I get up early enough for work without getting up half an hour earlier to take pills . In the past I’ve just accepted the doctor’s diagnosis and got on with it , but as I’m getting older more things are going wrong and then reading some of the thing that other people are experiencing I wander if I need my treatment revised , or is it just getting older taking effect ?

NWA6 profile image
NWA6 in reply to Th30m0us3

Always revise your treatment. Getting older is just an excuse that we’re gaslighted for to let others off the hook. I’m nearly 50 and I’ve never felt better now that I’m optimally treated. We deserve optimal not ‘in range’ or ‘normal’ what’s normal for you isn’t for me as they say 🤗

tattybogle profile image
tattybogle

Hi, Welcome.

it's true that calcium and caffeine, and some other things, do reduce the amount of thyroxine (t4) that is absorbed from the gut.

So if you have always taken your dose with milk and a cuppa tea , and now change to taking away it from breakfast then the amount you absorb will probably increase by a small amount .

This will have the same effect as if you had a (very small) increase in dose.

The main reason we say to take away from food etc is to ensure consistency of dose, however for the sake of argument if you were to have exactly the same breakfast each day and take thyroxine with it, then you would absorb the same consistent dose .It's just that you would need to take a slightly higher dose to have the same effect as if you took it away from food/caffeine.

I personally take mine in the morning with a cup of rooibos tea which has no tannins or caffiene, and i do have a splash of milk and half a sugar. But since i do the same thing every day thats fine. I wait an hour before breakfast though.

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

You will need to get thyroid levels retested 6-8 weeks after changing how you take your levothyroxine

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Also

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Extremely important to regularly retest vitamin D, folate, ferritin and B12 as well as TSH, Ft4 and Ft3

Always get blood test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Testing

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

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