I don't understand: if I remember correctly, the... - Thyroid UK

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I don't understand

Naomi8 profile image
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if I remember correctly, the average thyroxine prescription is 125-150mcgs.

I was on 125mcgs for 16 years.I then moved onto T3-only before switching to NDT.My FT3 is at the top of the range,my TSH is suppressed to the .00s.That is on 2 grains.

Re-reading "Stop The Thyroid Madness"2nd edition,I see they say that the average NDT dose to be symptom-free is 5 grains.They advise that if unable to raise to this dose,there is another issue(eg adrenals,iron deficiency etc)

Surely the FT3 would be well over-range on this dose?

Are there 2 schools of thought,one of which says ignore blood tests completely if feeling well?

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Naomi8 profile image
Naomi8
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shaws profile image
shawsAdministrator

One of Thyroiduk's Advisers (now deceased due to an accident) only took one blood test for the initial diagnosis. He'd only prescribed NDT for hypo patients and T3 for those who are 'thyroid hormone resistant',

His viewpoint was that it was the aim to slowly resolve all clinical symptoms and that was done by small increases. This is a link which might be helpful.

naturalthyroidsolutions.com...

Bear in mind that the blood tests were introduced along with levothyroxine (T4 only). Before that it was NDT alone which contains T4, T3, T2, T1 and calcitonin and the reliance was upon reaching an optimum dose bringing relief of symptoms due to small increases. If we take T4/T3 or NDT the blood tests cannot correlate as they were for levothyroxine only. So it is relief of symptoms which guides us slowly to good health.

jimh111 profile image
jimh111

I don't have experience of taking NDT but the manufacturers state 1 grain of NDT is equivalent to 100 mcg levothyroxine. Although 1 grain usually contains 38 mcg T4 plus 9 mcg T3 you can't directly compare this with the 100 mcg of L-T4 in levothyroxine. This is because of the different pharmacokinetics of the two drugs, different absorption rates and different elimination rates. Thus, going by TSH is the best measure we have to compare the two. There are potential flaws in using TSH. The pituitary is better able to convert T4 to T3, so TSH is more likely to respond to the T4 in levothyroxine. On the other hand we don't know how the pituitary responds to T3. For example, does it respond to average or peak T3 levels.

Thus, the best marker we have is TSH. Many patients need higher doses of NDT, this is likely due to them having a need for supraphysiological doses of thyroid hormone. When given supraphysiological doses of levothyroxine the body responds by converting much of the T4 to reverse T3 in an attempt to protect against thyrotoxicosis. I would not go beyond two gains of NDT unless you really need to.

I haven't read the "Stop The Thyroid Madness" but IF they say the average NDT dose is five grains and being unable to raise the dose to five grains is a consequence of other isssues such as adrenal failure or anaemia then I would completely ignore this book. I'm doubtful that they really say this (I'd need to read the book), it would be a very dangerous statement to make.

MaisieGray profile image
MaisieGray in reply to jimh111

I'm not close to my book to check, but the website doesn't say an average dose is 5 grains. Rather, it states "After raising every few weeks as explained above in search of one’s optimal dose, many end up in the 3-5 grain area, but some are optimal lower, some are optimal higher."

greygoose profile image
greygoose

I think it's more likely there are two schools of thought about STTM: those that love it and those that find them far too gung ho and lacking in comprehension that not everyone is the same.

I have never heard it said anywhere - not even on STTM - that the average dose of NDT is 5 grains. That would be far, far to much for most people. Admittedly, for some people there's not enough T3 in NDT - especially if they don't convert very well. But, 5 grains would give them far too much T4, so they would be more likely to stick at 3 and add in some T3. But, that is the exception, not the rule.

You're right to query this. You're far more likely to get good advice on here than anywhere else. :)

Naomi8 profile image
Naomi8 in reply to greygoose

Fab reply-that's me sorted.I did the gene test last autumn,& found I have the DlO2 varient from BOTH parents.I tried adding a bit of thyroxine to my NDT,but I cannot get on with thyroxine anymore(tachy & ectopics)I did this following the theory that NDT contains a far higher proportion of T3 than human thyroid.

However,after previously being on 55mcgs of T3-only,I find a quarter of a tablet of T3 on top of my 2 grains of NDT is good.Half a tablet causes me mood/energy swings.

Its such an individual thing,so trial & error seems inevitable.

greygoose profile image
greygoose in reply to Naomi8

Oh, it is indeed and individual thing. If only doctors understood that!

SeasideSusie profile image
SeasideSusieRemembering

Naomi8

if I remember correctly, the average thyroxine prescription is 125-150mcgs.

According to NICE Clinical Knowledge Summary

cks.nice.org.uk/hypothyroid...

Prescribing Information > Levothyroxine:

.....

The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response.

...........

The usual maintenance dose is 100–200 micrograms once daily.

.....

We have to remember that whatever thyroid hormone replacement we take is individual to us, one person may be fine on 100mcg Levo, another may need 300mcg, others anywhere inbetween. Same with NDT, one person can do well on 2 or 2.5grains, another may need 5 grains and again others anywhere inbetween. We just have to find what is right for us and ignore what anyone says about "averages".

Naomi8 profile image
Naomi8 in reply to SeasideSusie

Thanks,SeasideSusie

Naomi8 profile image
Naomi8

Thank you SeasideSusie.I am still on that journey of trying to find what suits me.At present I am sticking with a quarter tablet of T3 in addition to my 2 grains of NDT.I tried two & a half grains of NDT & found it was too much T4(tachy & ectopics,as with thyroxine).

Half a tablet of T3 is too much(mood/energy highs & lows,insomnia)

I am taking gastric-coated NDT so do not want to split these.My only problem is getting an accurate split of T3 into 4.(Crumbling & unequal sizes.I have 2 good pill cutters)

jimh111 profile image
jimh111

Thanks everyone for your comments that clarify the situation. An average of five grains was alarming. I guess we have to remember that those patients that eventually migrate to NDT are usually the ones with more difficult thyroid problems and more likely to need higher doses. I suspect that if the general hypothyroid population were all put on NDT they might settle somewhere between one or two gains but these patients are generally not the ones who have to use NDT and often need higher hormone levels.

MaisieGray profile image
MaisieGray in reply to jimh111

I don't think that's necessarily the case in the US is it? Aren't patients far more likely than here, to be prescribed an NDT as first choice, when first diagnosed?

jimh111 profile image
jimh111 in reply to MaisieGray

Possibly but I don't know what doses they are on.

silverfox7 profile image
silverfox7

The crux of the matter is that it's the amount you need which is the correct one. I started out with NDT from the NHS and took one tablet which I now assume wasone grain. Somewhere down the line I must have had more symptoms so another grain was added but eventually there wasa prolonged strike so the NHS couldn't get a supply so after several months I went onto Levo but during my time-about 4-5 years I never had any testing and was perfectly well.

I'm now now back on NDT and again at 4-5 years but tested religiously! But I now take 1.75 grains two days and 1.5 the third so a little lower than before and again perfectly well. Invetween I was on 125/100 Levo. I have but my slightly lower dose as I went down the checking of vits and minerals and it does make a difference to levels and thanks to the very informative post from Diogenes I know understand more on how the dosing works on NDT though I've expected the same myself that the T3 component is used first so the body is taking what it really needs. But don't get panicky over suggested levels. We can all be very different, so just concentrate what is right for you. Your body will be the first to tell you if you have got it wrong.

Naomi8 profile image
Naomi8 in reply to silverfox7

Many thanks for your reply.Can you post the relevant Diogenes link on this thread?(I have to admit I don't know how to do links!)

I have made sure I have good levels of the appropriate vits & mins & have tested privately where necessary(last autumn)Just sent off a female hormone balance test.Am post-menopausal & been using natural progesterone cream on & off since perimenopause.

I also take LDN & started that in 2015,working up to 4.0 very very slowly.

The main symptoms I still struggle with are poor energy levels & weak & aching joints.Just had my second bout of gout.(I don't drink & eat meat rarely)Been overweight since 18 months on an SSRI,which I weaned off ultra cautiously 6 months ago.

I know my very weak hip joints can be made worse by too much T3,as well as too little thyroid hormone.Finding the balance,or sweet spot as some call it,is a long process.Been at this tweaking since 2014....

silverfox7 profile image
silverfox7

It's just basically as I said. Someone posted recently about how taking NDT works and Diogenes replied that the T3 component is used first so the T4 component is more a filler. I'm not good at saving or searching for links either but if you search for him it should be in the thread. I'm taking NDT at the moment but I wasalso started it when first diagnosed and always found it to be very stable. I only went over to Levo as a strike in Canada stopped my NDT and to be fair imince sorted I was good on Levo as well until menopausal but could get it right for me anymore so went back eventually on NDT. Been fine but there's always someone who things I should take less or not at all but it's a battle I'm happy to win!

london81 profile image
london81

I am on 5 sometimes 6 grains of nature throid. my t3 is only at the lower top of range and my other levels are ‘normal’, strangely this is my optimal dose, i don’t have any palpitations or bone issues, i think i ruined my tolerance levels when i took loads of caffeine pills, red bull etc in my early 20’s because i was so tired ( which i now know is due to hashimotos!)

it’s very expensive and i’m constantly worried that the supply from america might not always be available. i’m in contact with my MP re: the investigation into the supplier over charging of T3 to nhs and hope one day the price might come down, and the nhs might prescribe!

Naomi8 profile image
Naomi8 in reply to london81

You are responding to a thread that is 4 months old.Better to start a new thread.I used to buy Naturethroid from the US but its SO expensive.There is VAT on top,Border Force UK add this,then the PO adds their handling charge,then I have to go & pay this & collect it.

I now take Thai NDT & find it as good,but a lot cheaper.

I have dropped the T3 & am on 2 grains NDT.NHS blood test due shortly.Not sure if this will include FT3 this time,due to ghastly GP, but will repeat Medichecks if not.

london81 profile image
london81 in reply to Naomi8

i know it’s an old post i was just giving insight into why some need high doses

I bought thai ndt (thyroid s ) but it made me feel really puffy and tired

Naomi8 profile image
Naomi8 in reply to london81

that's a shame-did you try upping the dose?

london81 profile image
london81 in reply to Naomi8

i wasn’t sure it would be wise because i’m on such a high dose. i think i’ve read it could be the fillers! i have a load at home i might try and add a couple a day in replacement of the Nature throid and see how i get on!

NWA6 profile image
NWA6

So for me it’s like this. The introduction of calories to the modern world as a method to reduce ones body mass. Well you can eat a 100 calories of chocolate or 100 calories of carrots. Each will have a different effect on ones body. They’re not the same no matter how much ‘weight watchers’ tries to tell you they are.

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