starting NDT: hello I’ve been on levothyroxine... - Thyroid UK

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starting NDT

Sonicfairydust profile image
13 Replies

hello

I’ve been on levothyroxine for about 15 years and today I’m switching to NDT.

My practioner told me to start at 15mg then increase to 30mg ,60mg being the maximum.

As I hadn’t received her email yet I took 30 mg today which was too much. Tomorrow I’ll start at 15 mg,how often should I increase my dose til I reach my optimum dose?

Will have a full thyroid blood test in 3 months .

Many thanks

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Sonicfairydust profile image
Sonicfairydust
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13 Replies
Jazzw profile image
Jazzw

I think that might be unnecessarily cautious but it depends. How much levo were you on—and when did you stop taking it?

Also a bit perturbed by the notion that 60mg is the maximum—you need what you need, and those of us on NDT usually need more than that.

FancyPants54 profile image
FancyPants54 in reply to Jazzw

One grain is terribly low. Hopefully this doctor wants to hold it for a while and then test.

Sonicfairydust profile image
Sonicfairydust in reply to Jazzw

I was on 81.25mcg of levo and since yesterday on 15mg of Erfa NDT. I think the 60mg max is referring to my dose on levothyroxine prior switching

pennyannie profile image
pennyannie

Hello Sonicfairydust:

Yes - that is how I started taking NDT -

Did you run some blood test first of your T3 and T4 - so have some bench mark readings to refer back to -

it's advised to take NDT on an empty stomach and wait around an hour before you eat or drink anything other than water -

slowly build up your dose and you should experience a reduction in the symptoms of hypothyroidism - as your T3 reading slowly increases.

I monitored myself on blood pressure, pulse and temperature twice daily AM & PM until I found a dose I felt well on - and whilst these first 2 physical checks remained constant I saw my temperature slowly rise from 35.4 to 36.6 - where it is today some 6 years later.

I increased my dose by 1/4 grains weekly - some suggest every 2 weeks -

Some take just 1 dose a day - others take a second dose around 8/12 hours later -

There came a week where I didn't feel as well as the previous week, just a bit edgey and uncomfortable in my skin -

so I dropped back down to the previous dose -

stayed on that lower dose for 8 weeks and then ran a blood test -

I felt very well but wanted to see what my T3 and T4 blood test results then looked like.

My T3 and T4 had ' swopped places ' as my T3 was at 110% through the range with my T4 at just 25% - job done for me :

I'm with Graves Disease and post RAI thyroid ablation 2005 -

I only seem to need a small dose of NDT - and take 1 + 1/2 grains - all in one go - in the middle of the night to dovetail in with the circadian rhythm of the body:

It is suggested that if and when you reach 2 grains - you stay on this dose 8 weeks and then run a blood test - if your T3 hasn't moved much and you still have all of your symptoms maybe NDT is not the most appropriate treatment option for you.

No thyroid hormone replacement works well until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels within the ranges.

Elle2024 profile image
Elle2024 in reply to pennyannie

That’s so interesting about circadian rhythm timing. Can you explain please ?

I have chronic insomnia so was very wary of taking wrong time of day. First few days I took around 4 am as awake then, sleep wasn’t great. Then read up , saw it can be stimulating for some so moved it to 8am.

but think now it’s better since I take it this time .. will know more in few weeks I guess

pennyannie profile image
pennyannie in reply to Elle2024

Well it' a bit long winded to go into in any depth here - basically to body has its own natural rhythm and 24 hour clock - prompted by light and darkness - and sleep is needed so that the body can ' close down ' reset, repair and restore itself for the next day and read the body starts up again in the early hours of the morning hours before daybreak.

Elle2024 profile image
Elle2024 in reply to pennyannie

Thanks yes have been trying to do more circadian rhythm alignment in general like screen time etc . Daylight in morning .. just wondering did you find for NDT a ‘better time ‘ for circadian. Alignment? Thanks

pennyannie profile image
pennyannie in reply to Elle2024

No - not really :

Elle2024 profile image
Elle2024

I started it straight away on 30mg and it’s been fine so far ( 1 week in). I would be quite sensitive to some meds in reactions so I’ve been pleased with this. ( note I took levo few years ago for 3/4 months and it did not suit me ).

Yes as mentioned take it empty stomach and only water for hour after.

Good luck and hope you get the response you’re hoping for .

Sonicfairydust profile image
Sonicfairydust in reply to Elle2024

How many mcg of levo were you on and what difference have you felt between levo and NDT?

Elle2024 profile image
Elle2024 in reply to Sonicfairydust

I’m sorry I don’t remember but was starting dose. I just felt low and ‘off’ can’t really explain it . Mood and form were not great.

But i definitely don’t feel like that now on NDT. Guess im not seeing the therapeutic benefits yet as too soon but hoping for the best.

Ps I know most people suit Levo maybe I j was just unlucky.,

Litatamon profile image
Litatamon

Just want to add that slow & steady **for NDT** is great advice, for most people.

But it was not for me. I had horrendous symptoms that might have made me think NDT was not for me.

About two weeks in, after feeling like I was a drug addict in withdrawal, I jumped to what I calculated might be the best equivalent & all the bad symptoms disappeared and I felt fantastic.

Just want to point out it is not a one size fits all with introducing NDT.

Beingreal99 profile image
Beingreal99

FOR me when i transitioned, i split my dose half in the early morning and half noon and i could feel the t3 . If it was too much i would get a bad headache....... and within weeks to months i was taking it all at once w no issue hence there was a transition time for my body to get used to getting t3 in my meds directly

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