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

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starting NDT

Sonicfairydust profile image
23 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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23 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 toJazzw

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

Sonicfairydust profile image
Sonicfairydust in reply toJazzw

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

TSH110 profile image
TSH110 in reply toSonicfairydust

I was on 120/125 alternating levo (never felt good but that was as close to optimisation as I could get on it) and found 1.25 grains of erfa the right amount (75mg). I used the thyroid patient advocacy NDT protocol to títrate upwards to optimisation. and dropped levo by 25mg each time I added 1/4 grain of NDT just in case I had to revert to Levo, but I never looked back improvements were virtually instant.

Hope it goes ok for you too!

Sonicfairydust profile image
Sonicfairydust in reply toTSH110

is this a book? I’m still on 15mg of erfa and feel awful, I know I dropped from 81.25 mcg of t4 to 9mcg so despite difficult symptoms I must increase. How much did you increase by and how often?

I’m glad you are feeling much better! I hope to get there too ☺️

TSH110 profile image
TSH110 in reply toSonicfairydust

No it’s a web page. Helvella says some of it is not correct but the actual dosing protocol bit is fine. I’ll link to it so you can read up what they advise and on what time scale. I had to split my dose to twice a day or I felt weird I started with 1/4 grain I think that was ok it was the next increase that I had to take very slowly it was fine after that but everyone is different. If you’ve been starved of t3 it can hit you like a brick when you get some

tpauk.com/main/article/trea...

The only think I did different was stopping on levo and dropping it 25mcg each time i increased NDT by a 1/4 grain

Sonicfairydust profile image
Sonicfairydust in reply toTSH110

Thank you 🙏🏽

TSH110 profile image
TSH110 in reply toSonicfairydust

I do hope it helps you as much as it did me. I finally got my life back again that thyroid disorder had stolen for decades.

Sonicfairydust profile image
Sonicfairydust in reply toTSH110

When the thyroid is out of balance we feel so lousy it’s so important for general wellbeing! Thank you I hope so too, I have lots of things going on with my health but hoping that fine tuning NDT and LDN will give me a much better quality of life :)

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 topennyannie

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 toElle2024

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 topennyannie

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 toElle2024

No - not really :

TSH110 profile image
TSH110 in reply toElle2024

I used to dose twice daily but after being on it for some time I discovered one dose a day was fine. I took it on waking for a long time but switched to before bed when I read more is absorbed. First time I tried it I couldn’t sleep but had a go again some time later and was ok, no insomnia at all. I take mine at night but I’m not sure it makes a huge difference.

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 toElle2024

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

Elle2024 profile image
Elle2024 in reply toSonicfairydust

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.,

TSH110 profile image
TSH110 in reply toElle2024

My first 1/4 grain improved me fast, like the next day fast- it was like being a jigsaw with a piece missing that suddenly slotted back in place and I felt whole again, colour came back into my life quite literally it had been murky for so long, (colour vision can be affected by severe hypothyroidism) and I started to warm up after being freezing cold for what seemed like an eternity. Things just got better and better - it was like living a miracle almost like a having a divine experience. I’m a super fast reactor to medications according by to my 23&me data and it fits with my experience with any medicines including NDT. So may be that is why I got improvement so rapidly plus my T3 was rock bottom basement on Levothyroxine so I’d been starved of it.

TSH110 profile image
TSH110 in reply toElle2024

deffo I was, as close relatives with thyroid disorder loved the stuff but I felt dreadful on it after two years and I knew something was not right because of them getting such a completely different outcome and very quickly . No amount of levo above the “optimised” dose I was put on made one jot of difference I just felt half dead

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.

TSH110 profile image
TSH110 in reply toLitatamon

yes I’ve heard some can just switch to a full replacement dose and feel fine. To think they had me fanning around on levo for 9 months and I still felt lousy yet I got a very satisfactory NDT dose in just a month and a half - what on earth were they playing at? Even better if you can get there in just two weeks!

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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