NDT: Hi All, I’ve taken the plunge and started... - Thyroid UK

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NDT

Flossiewestie2020 profile image

Hi All,

I’ve taken the plunge and started taking NDT today! People on here suggested trying a combo of T4 and T3 first but I’d already purchased NDT and the consultant said there were lots of advantages of taking it over a combo so I thought I may as well try it.

I’m starting on one grain a day (half in the morning and half in the afternoon).

I was wondering what to expect and if people have any tips/advice? The dose seems low compared to the 100mcg of Levo I was on so I’m a bit worried I’ll have a mega-dip!

Changing medication is making me feel really anxious so any words of wisdom/reassurance would be appreciated!

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Flossiewestie2020
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15 Replies
siddooo1 profile image
siddooo1

Hi

Have you ever taken any T3 medication before? You may find starting on 1 grain too much, it is advised to start on a low dose and increase every 7 to 10 days or so. I started with just 1/2 Grain in the morning then folllowing week added 1/2 in the afternoon then carried on like this until I reached 2 grains, stayed on this dose for approx 6 weeks and then tested. Some take it more slowly and only increase by 1/4 grain each time. It depends on how well you tolerate the T3. I found that I didn't really experience any dips which I assume was down to the fact that I still had T4 sloshing around from the Levo. I was on 100mcg Levo and now on 1 and 3/4 grains of NDT (self medicating)

Hope this helps

Sidd0001

Flossiewestie2020 profile image
Flossiewestie2020 in reply to siddooo1

Thanks, that’s really helpful! I’ll see how I get on 😬 How do you split those tiny little pills into four?!

Others will advise against it but when changing from 150mcg levo to NDT, I started to take 2x grains per day and started to feel much better within a couple of days.I saw no problem with this as I was already feeling completely rotten right up to the change and didn't fancy being over-cautious.

Flossiewestie2020 profile image
Flossiewestie2020 in reply to

I’m tempted! Splitting the pills is such a faff 😂

serenfach profile image
serenfach

I have a pill cutter which is not always as accurate as exactly a quarter, and find myself licking a finger and dipping it in the crumbs.

One old fashioned way is to crush the pill completely by putting one in a spoon, putting another spoon on top, facing the same way, and then press down and rotate. This crushes without loosing any bits. You can then quarter the crushed pill easily (shades of making a line of coke!). I then find it easy to bung the powder into a spoonful of jam, and eat. I like jam.

I know this may not be the most convenient, but it works for me.

I did a straight swap because I did not know any better.

pennyannie profile image
pennyannie

Hello Flossiewestie :

I switched from 125mcg T4 to NDT the following day :

T4 - Levothyroine is a storage hormone takes around 6-8 weeks to fully leave the body and in that time you may well have built up your dose of NDT to optimal for you.

It is said that 1 grain NDT is equivalent to that of 100 T4 :

It's wise to take bench marks numers of your T3 and T4 before you start so you can plot your progress and I took my blood pressure, pluse and temperature twice daily .

I started with 1/2 grain taken at 3 00 am in the morning to dovetail in with the circadian rhythme of the body.

Week 2 I increased by 1/4 grain :

Week 3 I increaed by another 1/4 and so forth and so on :

If you get to 2 grains, hold this dose for 6 weeks and then take a blood test to see where your T3 and T4 now sit :

If your T3 hasn't moved much from your bench mark numbers and you still have symptoms NDT may not be the best treatment option for you to be taking.

If your T3 has moved and you are pleased with your progress but still with symptoms just continue low and slow until you sense " that one week " where it's as though it's not quite as good as the previous week, so then drop back down to the previous week's dose stay there 6 weeks, letting that dose bed in and have a blood test as then that's your best dose on NDT at that point in time.

I got to 1 + 3/4 grains but felt a little anxious and uncomfortable in my body so dropped back down to the previous weeks dose - gave that 6 weeks to let it bed in and then took a blood test.

My T3 and T4 had actually swopped places from my bench mark numbers as now my T3 was 110% through and my T4 just 25% through with my TSH still coming in at 0,01.

I left around 10 hours between last dose and blood draw and had I waited 24 hours would have been " in range " if having to have a blood test for approval from most doctors.

I had no " hyper " type symptoms, my blood pressure and pulse remained constant but my temperature had risen from 35.4 to 36.6.

No thyroid hormone works well until your strength vitamins and minerals, ferritin, folate, B12 and vitamin D are at optimal levels.

Some people split their NDT into 2 doses within a 24 hour cycle - others don't - it's an option and something to think about :

With NDT you dose to the relief of symptoms and not a blood test result or range:

NDT as used successfully for over 100 years prior to the science of blood tests, and the guidelines that were all introduced to be used when Big Pharma launched synthetic thyroid hormones in the middle of the last century.

neckmed1 profile image
neckmed1

Hi Flo, I agree with Penny, after a TT 19 years ago I tried Levo for 3 years before my GP prescribed NDT and it has made a great difference to me. I just can't believe that they have stopped people getting this vital hormone that the majority of people prefer if given a choice, see the NHS special pharmacy report,

sps.nhs.uk/articles/what-cl...

Don't worry, it will do no harm and may let you feel much better!

Bluedragon profile image
Bluedragon in reply to neckmed1

I have to say that article annoyed me! Even when it was evident there was improvement in patients using DTE’s as they call NDT, they put negative slants on it- not a call for better trials…. Bah.

neckmed1 profile image
neckmed1 in reply to Bluedragon

Hi Bluedragon,

Yes, they seem to ignore the patients feelings, of 88% to 92% "feeling like a happy person" also the average dose on one study was 30mg. then 180mg. on another, with less than 100 people and just look at blood tests results. My private doctor says "TSH is irrelevant when taking NDT/DTE ", they seem to ban anything expensive like synthetic T3 even if you have no thyroid from cancer and don't convert T4 to T3, they have been told not to prescribe it to new patients and get everyone on T4.

I am very annoyed after buying NDT from Thailand for 15 years at £70 per 1,000 grains, to £1 per grain here in UK, and pay a private Dr. £160 to sell my prescription to me for £25, when we should get it from the NHS that we have paid for all our lives.

Also take afternoon dose by 3 so you do not to keep awake.

Tythrop profile image
Tythrop in reply to neckmed1

Hear Hear ref price

Ratkinson profile image
Ratkinson

Hi, I’ve just started NDT this week too, I was on 100 levothyroxine. My T 4 has been right at the top of the normal range and my T3 the bottom , hence the switch. I’ve started with 3 days of 1/2 grain then yesterday I took 1/2 a grain in the morning and 1/2 grain in the afternoon. I’ve had a really disturbed nights sleep and loads of dreams, not sure if that’s because of the afternoon dose of NDT ? Maybe I should have gone a week on 1/2 grain.It will be interesting to compare notes.

Flossiewestie2020 profile image
Flossiewestie2020 in reply to Ratkinson

My sleep has been pretty rubbish but it’s been a bit better since the switch if anything 🤷‍♀️ My levels were similar to yours but T4 was more like mid-range after it being above range on 125mcg - my T3 was low regardless. I’ve been on it a week now. Overall I’ve felt pretty well, like on my good days on Levo 👍

Hi Flossie,

How did you get on with your dosing? I've just switched from 150mcg levo to 75mcg levo & 1 grain of NDT and I'm curious to hear other people's experiences.

Flossiewestie2020 profile image
Flossiewestie2020 in reply to

Hi, I’ve stayed on one grain a day. I’m feeling pretty well but my blood test results are all over the place! Expect doctor will tell me to increase the dose. It’s all very confusing!

Capri2020 profile image
Capri2020

Hiya, can you please DM which NDT you started on? I'm looking for a different brand and keen to find one that works better for me, hopefully. Thanks

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