eating and NDT advice please: hi all please may... - Thyroid UK

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eating and NDT advice please

Knackeredandcross profile image
44 Replies

hi all

please may I ask for advice regarding NDT?

I’ve been taking my morning dose as I would t4; empty stomach and nothing for an hour after. I’m due to add in my afternoon dose this week and wondered how to time that with having lunch?

it’s supposed to be taken in an empty stomach so is it near an hour before lunch and three/four hours after breakfast? That seems too soon for the extra dose but I can work out how to fit it in mid afternoon if I eat lunch 12.30-1? And can I still have cups of tea with milk in for the three hours before?

what’s everyone’s routine please?

Thanks in advance 🙏🏽

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Knackeredandcross profile image
Knackeredandcross
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44 Replies
pennyannie profile image
pennyannie

Hello Knackeredandcross :

So what about taking your second dose after lunch at around 3 PM :

What time do you take your first dose, how much are you taking and have you noticed any changes and feel any better since switching to NDT ?

Did you take bench readings of T3 and T4 before this NDT trial so have something to compare and track your T3 on when it's time for a blood test ?

Are you monitoring your blood pressure, pulse and temperature throughout this trial so you have some idea what is happening within your body ?

I found my AM and PM pulse and blood pressure remained constant but found my body temperature slowly increased from 35.4 to 36.6 where it tends to be now, some 5 years later and have remained on NDT and much improved.

I only take 1 dose of NDT at around 3 AM at a toilet break so I've no additional worry about having to fit it in around food and life style.

You can have tea and coffee etc - but try and leave a good hour either side of taking the NDT and take the NDT with a full glass of water.:

Knackeredandcross profile image
Knackeredandcross in reply to pennyannie

that sounds like a plan. I was on a 25 mcg t3/125mcg t4 combo and have only recently switched but I’m not sure the dosing is correct. My endo said I should be building up to 3 grains but from what I’ve read about the actual effect on the body I’m working it out between 1.5-2 grains. I’m only on 1 grain at the moment which is not equivalent and I can feel the difference. I’m hoping adding the extra half will start moving in the right direction. I did have my bloods done just before starting but the endo said he’s going to go purely off symptoms and to not be too concerned.

It was him that said to split the dose to mimic the circadian rythym. Do you find just taking it all in one go works better? I usually do my first dose around 6am so if I can remember to eat lunch early I can try the later afternoon dose.

I need to start the temperature taking as I haven’t done it yet. Must it be a mercury thermometer or can you use digital?

Thank you for your advice 🙏🏽

pennyannie profile image
pennyannie in reply to Knackeredandcross

I don't think there is any point saying you need 3 grains or 1+1/2 grains :

You need what you need to relieve symptoms of hypothyroidism.

NDT does not work like synthetic T3 and T4 thyroid hormones nor will your blood tests look like they did when on synthetics - as you just need to track on the Free T3 readings.

Your previous dose was quite high - I wonder do you have Hashimoto's and likely absorption issues - thyroidpharmacist.com

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal - do you have current readings of ferritin, folate, B12 and vitamin D ?

Part of the reason for me taking my NDT at around 3.00 am is that I am following the circadian rhythm of the body - which I learnt about by reading Barry Durrant-Peatfield's excellent book Your Thyroid and How To Keep It Healthy - and because I need a toilet break then anyway and just seemed the easiest solution.

Knackeredandcross profile image
Knackeredandcross in reply to pennyannie

I do have hashis and I’m a poor converter but I was still symptomatic at that dose. Not sure about absorption. I am very tall and heavy though so it may be just under medicated. My vitamins are all optimal, I’ve been working on that for the last year and they are all at very good levels now. Fingers crossed the ndt will be the missing link 🤞

pennyannie profile image
pennyannie in reply to Knackeredandcross

Ok then - I'm around 5.10 and now around a UK size 18 :

My weight loss was the last improvement I saw and not until around a good 6 months into taking NDT and think I've dropped a couple of dress sizes.

Knackeredandcross profile image
Knackeredandcross in reply to pennyannie

that’s hopeful! I’ve put two stone in eighteen months so any weight loss would make my day. Thank you 🙏🏽

SmPea profile image
SmPea

I take NDT only, first dose 7.00am with plenty of water. Breakfast no earlier than 8.00am. Supplements at 11.00. Lunch time can vary a bit but try to take second dose no later than 3.00pm giving a full hour gap from lunch. Any later and it possibly causes disturbed sleep.

Knackeredandcross profile image
Knackeredandcross in reply to SmPea

thank you for this 🙏🏽

pennyannie profile image
pennyannie in reply to SmPea

I can't go past 10 am for a second dose of just 1/2 grain as I'll be kept awake 12 hours later and am not aware the second dose even had any effect on me so resorted to 1 dose a day in the middle night to dovetail in with circadian rhythm of the body.

I haven't a thyroid - RAI thyroid ablation 2005 for Graves Disease - so maybe that's why - it's interesting -

as we all have to find out for ourselves what suits us best.

meme profile image
meme

the late Dr Skinner thought NDT was better taken with food. Paul Robinson also advocates the same I understand. My morning dose was with food.

I am now trying synthetic with NHS Endo who doses by TSH only and not symptoms! It’s not going well so far🤭

Knackeredandcross profile image
Knackeredandcross in reply to meme

oh no, nothing worse than a tsh believer 😢 did you not feel the ndt was beneficial for you? Thanks for the info re: food, I’ll have a look at both of them 🙏🏽

meme profile image
meme in reply to Knackeredandcross

never 100% on NDT but it’s the availability of NDT that was becoming a problem. Also my palpitations (which I have had for years before hypo was diagnosed) were becoming much worse and GP thought it might be the NDT causing palpitations to become more frequent.

So an NHS Endo appointment was requested. Took a year to get it. He goes by TSH and not symptoms or free Ts. Only seen him the once which was in January.

My GP authorised a slight increase of T4 as the Endo had refused it. Even though I had several symptoms of hypo. Endo is unaware I have increased my dose and the hypo symptoms have now gone with the increase. I had bloods taken Tuesday. So it will be interesting to see what they are and what Endo thinks of them.

I did a private test in March TSH was 0.01 and frees below. TSH gone down from 0.04. I don’t think he will approve of that !

Bxw
jamesal0 profile image
jamesal0

I eat with both NDT and Levo. I just take more to compensate and use symptoms as a guide, just be consistent with whatever you do and it will work out fine

arTistapple profile image
arTistapple in reply to jamesal0

Might be a daft question. Do you stick with roughly the same type of food so you know that ‘balance’ remains or are you quite gung ho and eat whatever you want around your medication?

Knackeredandcross profile image
Knackeredandcross in reply to arTistapple

I tend to eat pretty much anything if I’m honest. It’s already complicated enough for me trying to remember to take all my different things at the different times 🤣 I also have supplements, progesterone and LDN to slot in so that’s enough to blow my mind!

arTistapple profile image
arTistapple in reply to Knackeredandcross

Same here. Fitting in supplements etc and for how long? Forever? Hardly bares thinking about.

jamesal0 profile image
jamesal0 in reply to arTistapple

Eat / drink anything. You should use your daily symptoms to drive dosage. ie Cold feet take more, mild headache take less, need granny nap at 5pm take more, insomnia take less, mild heart palps when resting take more, short on breath during exercise take more , dry eyes take more, going for a 5km jog take more prior etc. I keep a mental note on how much I've had over the last couple of days and it averages about 2 grains to 2.5 grains . So I'm only varying by about half a grain or 30mg perday.

arTistapple profile image
arTistapple in reply to jamesal0

Crikey jamesal0 that’s definitely in the gung ho category. You sound very confident. I envy you.

jamesal0 profile image
jamesal0 in reply to arTistapple

its your life

arTistapple profile image
arTistapple in reply to jamesal0

Once I get myself to having a life, I will take it on board.

Maldeerum profile image
Maldeerum

I take my morning NDT dose an hour before breakfast. I eat lunch at 12pm and take my second dose at 2.30pm and wait an hour before having a hot drink (I don’t have caffeine so I don’t factor that part in). That seems to work for me because I then fit my vitamins and iron in at intervals in the evening. All the best!

Knackeredandcross profile image
Knackeredandcross in reply to Maldeerum

this could definitely work for me, thank you. My only issue is I sometimes don’t eat lunch until 2/2.30 so I don’t want it to get too late. I don’t have caffeine either but I do have oat milk so wasn’t sure if that would be an issue.

Brightness14 profile image
Brightness14

I take 1.25 grain at around 6/7am and the other grain at 1.30pm. I have my lunch at 12 noon which is just a sandwich anyway. This leaves just over one hour prior to the second dose. It depends on your lifestyle.

Knackeredandcross profile image
Knackeredandcross in reply to Brightness14

thank you, I wasn’t sure how long after eating it had to be. I assumed the same as Levi which I used to do 3-4 hours but if I can do it after just two then that’s much more workable 👌

Brightness14 profile image
Brightness14 in reply to Knackeredandcross

1.5 hours is fine.

FoggyThinker profile image
FoggyThinker

Thanks for posting, I've been wondering the same - my instructions are to take a dose first thing (about 6 - 6:30 for me) then one between 2 - 3. Morning is fine as I often don't have breakfast til 10ish, but like you, I used to wait til 2ish for lunch. I'm adapting OK to an earlier lunch now, around 12 - 12:30, and have been sleeping in general the best I have for years with a 3pm-ish dose.

Knackeredandcross profile image
Knackeredandcross in reply to FoggyThinker

we are very similar! I do first dose at 6am and definitely prefer a later lunch. I’m hoping I can push the later dose back if required without it affecting my sleep too much 😴

FoggyThinker profile image
FoggyThinker in reply to Knackeredandcross

I have hashimoto's too (so another similarity). Hope it works out well for you one way or the other :)

SilverAvocado profile image
SilverAvocado in reply to Knackeredandcross

Knackeredandcross,

I wouldn't worry at all about it impacting your sleep at this stage. This is something people vary in a lot, some people may find they can't sleep too close to a dose, but another group of people will be the exact opposite and find it improves their sleep. And probably the larger group will feel no particular difference.

It is just one of those things to keep an eye on and if you find your sleep is disturbed later in the experimental process then adjust based on that.

I think timings of doses is one of the biggest trial and error elements of dosing. Many people will do fine with almost any dose split. Some will find it makes a big difference and they feel better for a few hours after their dose and noticeably more sluggish maybe six-twelve hours later so they want to space them more evenly. Still others want the bulk of their dose in the morning and just a tiny piece in the afternoon or evening. All you can do is try things out, pay attention to what you feel. Don't be fearful of maybe feeling a bit worse for a few days or weeks, as you can always change things back or try other things quite easily.

Personally I split my dose into four doses including one at night, and I'd split them even further if I could manage the logistics. I just feel better with a more even level of hormone in my body across the day. But it took me years of experiementation to get to the point where I knew that, so don't worry too much about anything complex at this point. Just find something that fits in with your day, and notice how you feel once you make the switch.

Knackeredandcross profile image
Knackeredandcross in reply to SilverAvocado

thank you kindly, I do prefer the splitting of dose even though it’s less convenient it’s just trying to plan it around food and other supplements so there’s maximum absorption.

Hi Knackeredandcross.

I've been wondering the same thing (only just started on one dose of ndt, so no experience so far) and I came across this:

vitalithyndt.com/blogs/natu...

“The general rule is to wait at least 2 to 4 hours after your last meal before you take thyroid medication."

-That would mean a mid afternoon dose, dependent on when lunch was eaten and then a late tea, perhaps.

Incidentally, also found: academic.oup.com/edrv/artic... where it lists lots of T4 interferers/blockers with the longest acting listed as soy: "....… the efficacy of T4 treatment was regained when separating T4 from soy ingestion by 12 hours."

Haven't found anything, yet, on tea?

Knackeredandcross profile image
Knackeredandcross in reply to

thank you for this! Following advice I have been making sure i eat lunch by 1-2pm and then taking afternoon dose 2 hours later. It seems to work like that but only the blood tests will confirm. I never eat soy as I’ve heard it’s bad for hashimotos and I always take my supplements 4 hours after my afternoon ndt so that’s working ok 👌🏽 How are you finding the ndt? Have you felt any differently on it?

in reply to Knackeredandcross

You got this, Knackeredandcross. Sounds like you're all organised. 🙂

When I drank soya milk years ago, it caused acne. Probably because of thyroid.

As for my first ever thyroid medi and on ndt, not feeling any different on 50mg USP after two weeks. May get the doc to raise doseage when I see him on Monday. Here's hoping!

Knackeredandcross profile image
Knackeredandcross in reply to

that doesn’t sound like a lot but I think they always start low and work up. My doc goes purely on symptoms with it. Good luck at your appointment ❤️

in reply to Knackeredandcross

Brilliant that you have a doc who goes by symptoms!

Knackeredandcross profile image
Knackeredandcross in reply to

he is very much about how you feel. He’s fantastic! My own GP hasn’t got much of a clue really so I needed him to verify everything I’ve been trying to tell them and luckily they are happy to hand over all my thyroid care to him. One less job for them I suppose…

arTistapple profile image
arTistapple in reply to

Very interesting Dioryth. I did have a period of eating macrobiotic food where soy is obviously used a lot! Gluten too in the form of - can’t remember what it was called but it was good to eat. I was not diagnosed then but it was a period when my migraines (denied by doctor that they were migraines and after everything we learn on this forum maybe not strictly speaking migraines but perhaps cluster headaches would describe them also) were truly terrible. So even without medication, could be soy interferes with thyroid production. By the way I undertook eating macrobiotic to help me! Ha!

Knackeredandcross, pleased to report an update on 15th day where I experienced motivation....got some jobs done that were overdue for months, and in one case, years.

Just a little problem of hayfever/mild asthma that started on the 13th day and hoping that is temporary, and not a reaction to the usp.

Oh, and I found the equivalent of usp to levothyroxine.

According to naturalthyroidguide.com/sta... and working it out from their chart: 50mg Armour [source of the usp I'm on?] is roughly equivalent to 80mcg of Levo.

Knackeredandcross profile image
Knackeredandcross

that’s fantastic to hear you are feeling an improvement. I heard it can take a while to build up to feel the benefit. Fingers crossed it’s onwards and upwards! I must be feeling a it better as I’m considering doing some exercise today which never happens on a Monday 🤣

in reply to Knackeredandcross

Yep, definitely progress when you start thinking about exercising, Knackeredandcross. 👍

-The killing of motivation has been a significant factor with my thyroid decline.

Knackeredandcross profile image
Knackeredandcross in reply to

I’ve been exactly the same. I seemed to lose any ‘oomph’ to do anything. Even getting out of bed seemed momentous. I’ve actually got up and gone swimming twice this week and I’ve felt positive for the first time in two years ❤️ Im praying it continues… 🙏🏽

in reply to Knackeredandcross

Going swimming is major, let alone twice in a week: good on you, Knackeredandcross!

And feeling positive for the first time in two years is amazing. One, for feeling positive and two, for it being that long.

Feeling positive is such a gift of good health.

(I still haven't got back to the pool, and haven't moved much from the lounge today. Haven't yet done titration tests as it's only five weeks since I started.)

Knackeredandcross profile image
Knackeredandcross in reply to

hopefully you are moving in the right direction though if you’re still symptomatic maybe a dose increase will help. Are you having your bloods done at 6 weeks?

I find if I do a lot one day it can impact on my tiredness still the following day or so so maybe I’ve room for a small increase. My next appointment isn’t until July so my blood test will be in two weeks and I can see where I’m at then.

Wishing you luck for continued improvement ❤️

in reply to Knackeredandcross

Thanks, Knackeredandcross. Early days and I have a doc who professess to know nothing about NDT, so will see if he will agree to 6 week titration blood tests. (He originally said to get retested in 12 weeks & dropped it down to 10 when I questioned.)

Good to know someone else understands the one-day recovery routine.

Ever since a bad reaction to an iodine test years ago where I went hyper, then into hypo (now I realise from all the helpful info/experiences of people on this forum), where I had to take a day to recover after one normal day doing bits and pieces.

That started changing about two years ago to eventually needing two days to recover from one day of going out doing a few errands. Ridiculous. Then I gradually ended up basically not moving from the lounge unless I absolutely had to get something done. Still not wanting to go out, socialise. Hoping I'll get that back eventually if the doc will agree to a second daily dose.

How are you recovering from your swimming?

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