how much?

i forgot to ask what's the highest dose of levothyroxine prescribed for tt patients in england. when i looked at an american website there were women on medications who were taking doses of 200m and sometimes more,is there a danger in taking that much?

during the past three months i've been using painkillers every day, which also worries me.

also how often should there be a test to check levels are all stable?

and lastly, if it turns out my levels are 'normal' when i get bloodtest results on monday,what the hell else can be making me ache so much and feel so stiff.? can anyone please tell me what the symptoms of under dosage can be and can they just 'come on' as mine have.

before my tt,2 years ago i 'd never taken medication, been in hospital or had anything more serious than flu. i'm 67. so it's been an almightly shock all round . also are there any alterative treatments, ie massage, acupuncture etc diet changes that will be benefit me?

cass88

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  • People have been on far, far higher doses.

    The USA use 600 micrograms as a standard for testing on healthy volunteers.

    It is easy to find patients on 500 or more a day.

    There is a danger in taking too much. So the question is really, how much is right for the individual person?

    The common things we keep saying should be considered are:

    vitamin B12

    folates

    iron/ferritin

    vitamin D

    The other thing that we keep saying is this:

    Take levothyroxine well away from food, drinks (other than water), supplements and other medicines. So many things interfere with absorption this is the safest way of doing it. Ideally two hours between levothyroxine and anything else. And four hours for things like iron and calcium (including significant dairy produce).

    It is usual for people to get a single test every year. Some get more.

    Do make sure you get your levels printed - including reference ranges - when you see them.

    All the best

    Rod

  • As you mention the USA, the USA Synthroid brand of levothyroxine is available in single tablets of 200 and 300 micrograms:

    rxabbvie.com/pdf/synthroid.pdf

    There has to be someone takes them! And quite possibly combinations to make even higher doses. :-)

    Rod

  • Hi

    Regarding Dosage. My daughter who lives in Mexico told me yesterday that her GP said it doesn't matter how much T4 she takes ?

    Just a worrying MOM but is that true. I know her income doesn't allow her to have regular blood tests, is that True. If so how come I had to have a blood test with the increase and an EEG.

    Thank You

  • Definitely NOT true.

    There are people here who have to play around (splitting tablets, alternate day dosing, etc.) in order to feel OK. A tiny bit more, or less, and they feel terrible.

    Some people seem very much less sensitive than others, but I doubt very much whether there are any who would agree that it doesn't matter.

    Rod

  • Feel I ought to stress that the danger lies in taking more than you need rather than taking a high dose. You need what you need, and being under-medicated can be dangerous too.

    Just having your levels in the 'normal' range, is not the same as having them optimised. As Rod said, get copies, don't just trust your doctor's version of what is 'normal' or 'fine'. What does he know! He isn't in your body.

    As to acupuncture and massage, they are wonderful! But the relief is only temporary, they are not going to have a lasting effect on the root cause. Diet changes? Hm. What did you have in mind? Some people have coeliac as well as thyroid problems, you could get tested for that and going off gluten might help. Depends why you are hypo. Why did you have the TT? The only thing I can really think of is staying far away from soya, because that can make you very ill. But as you don't have a gland, the rest of the goitrogens shouldn't hurt you.

    Just after I was diagnosed, and feeling so ill, I tried just about anything I could in an attempt to make me feel better. I spent a small fortune and an awful lot of time before I came to the conclusion that I was just chasing dreams. I saw some real quacks - those that knew they were quacks and those that really wanted to help. But nothing did. Then I found out that my gland was dead, anyway, killed by Hashi's. And I didn't find anybody that could reserect the dead...

    All in all, if you haven't got a thyroid then the only thing you can really do is take thyroid hormone replacement in sufficient quantities to make YOU well - and that is probaly more than your doctor thinks you need, I'm afraid.

    Hugs, Grey

  • thanks grey,

    my story is very different from yours, i was feeling fine but noticed one morning i had a soft lump in my throat which i hadn't noticed before. i was living in spain at the time. i went immediately to a spanish doctor who had scanning facilities at his surgery. i was told i had nodes in my thyroid, and one appeared sinister. he advised seeing a specialist sap. i was seen by a consultant at a private hospital and a biopsy arranged the same week. a thyroidectomy was recommended. by then the medical costs were getting expensive, and i was able to transfer to the spanish state health system .surgery was performed at a state hospital ,on the private hospital's recommendation, but afterwards the surgeon told me the autobiopsy had'showed up nothing at all and no evidence of anything sinister had been found,which conflicted with what i'd been told at the private hospital. it was also then that i was prescribed 60m of medication by a doctor who later disappeared from the clinic under something of a cloud and nobody would talk about him when i asked.

    i returned to england, aware i'd be on med. for the rest of my life, and knowing i had no way of challenging the spanish legal.medical system. i guess i'll never know if i needed that op i did have a problem with local gp,in london, who was reluctant to make much increase at first. i'd been so depressed and morbid i hardly recognised myself until then. but i then went to a private consultant who thought differently, which seemed to be worth the fee i paid, so i was able to present london gp with that and the dose went up.from 60 m to 150m .this was a big improvement within the year. but body now telling me it's not enough,

    it does all seem a game of hit and miss, i was never once told what the effects might be if dose wasn't right for me, but led to believe that daily lovothyroxine at prescribed dosewas all required, i realise now that it;s a widespread problem, and has effects that can be life changing,and tailloring and monitering med to each individual is quite a task for gp's, as 'one size definately doesn't fit all' but it does seem to be a problem that needs addressing.

    it's a relief to find this website.

    if there are any meet up groups in my area, ( islington) i;d certainly attend.

  • >I forgot to ask what's the highest dose of levothyroxine prescribed for TT patients in England....

    There's no definite maximum, but the vast majority of patients take less than 200mcg per day. Whenever doses substantially higher than 200mcg appear to be required, it is well worth asking WHY....

    Reasons may include:

    1.Taking levothyroxine at the same time as foods/drinks that interfere with absorption.

    2. Taking levothyroxine with food supplements (eg. calcium, iron etc), antacids or drugs (eg. sucralfate, cholestyramine) which interfere with absorption.

    3.Taking drugs which decrease the acidity of the stomach (eg. omeprazole, lansoprazole etc). This may reduce absorption.

    4. Taking drugs which accelerate the metabolism of thyroid hormones eg. some epilepsy medications, or drugs which increase levothyroxine requirements by some other mechanism (eg. combined oral contraceptives, HRT).

    5. Missing doses of medication.

  • is there a list of foods and drinks that can ineterfere with absobtion?l

    i take med an hour before i have food or drink in the morning.any suggestions about best time to take? i;d thought of taking before i go to bed..

  • In my view, you really cannot say that any foods/drinks (other than water) are "safe" in terms of not interfering.

    We know for sure that some things very definitely have major effects (e.g. those that contain significant iron or calcium). But we cannot say that other things are without any effect. And it is quite possible for foods to change in composition from one day to the next. Soy is known to have an effect but perhaps few of us are aware which loaves of bread contain soy and which do not. Oh - and many believe or suspect that wheat products have their own effects anyway!

    Regarding taking at bed-time,have a look/read here:

    thyroiduk.healthunlocked.co...

    Rod

  • >i take med an hour before i have food or drink in the morning.

    That should be fine. If you take supplements containing iron (eg. ferrous sulphate) or calcium, these should be taken at an entirely different time of day.

    >i;d thought of taking before i go to bed..

    You could, but if you've been eating in the evening, your stomach may not be empty. Dosing on waking is more common.

    >is there a list of foods and drinks that can interfere with absorption?

    In general, the foods which may interfere with absorption are only likely to do so if taken at the same time, or near the dose so that they 'mix' in your digestive system. This is why you take your dose on an empty stomach and avoid eating for one hour. Calcium containing foods such as milk may be a problem, as may high fibre foods. Taking a dose with cereal and milk is not a great idea.

  • I started off on 100 a day following total thyroidectomy. My blood test after that showed tsh too high at 30+

    The doctor called me and said take 200 a day from now on.

    I wasn't overweight then but 2 years later I am . Also I'm still on 200 a day

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