NDT: How to change from Levothyroxine to NDT... - Thyroid UK

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helpme2 profile image
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How to change from Levothyroxine to NDT please?

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helpme2
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29 Replies
phoenix23002 profile image
phoenix23002

I can't speak to anyone else but I went from taking Synthroid one day to NDT the next. My TSH climbed over the treatment period but I felt fabulous. I slumped a little just before a few of the raises but NDT saved my life and resolved 90% of my hypo symptoms. Iodine supplementation took care of the remaining 10% (primarily cold intolerance). My primary hypo symptoms were brain fog, depression, horrible short term memory, crushing, profound fatigue and bone aches, especially thigh/leg bones.

It is recommended that if you are self-treating, start off with one grain (60 mgs) of NDT, track temps and heart rate each day and raise by 1/4 - 1/2 grain increments every 10 days to 14 days. You don't want to stay on too low a dose for too long. But... you don't want to raise too quickly either. You are trying to hit your 'sweet spot' without over-shooting the mark.

You should try to make sure that your D3, B 12 and iron levels are optimal before starting NDT if at all possible. It is difficult to stabilize NDT dosage if these are low. You should have labs done at about 6 weeks... TSH, Free T3, Free T 4 at the least.

stopthethyroidmadness.com/n...

adin profile image
adin in reply tophoenix23002

phoenix23002, you split your dose or take in one ?

thank you

sofluffy profile image
sofluffy in reply toadin

I split mine. Half an hour before I eat in the morning, the other half mid afternoon.

phoenix23002 profile image
phoenix23002 in reply toadin

Hi, adin. I split my dose and take it sublingually (let it dissolve) but for years before I started doing that, I just took the whole dose in the am.

sofluffy profile image
sofluffy in reply tophoenix23002

"You should try to make sure that your D3, B 12 and iron levels are optimal before starting NDT if at all possible. It is difficult to stabilize NDT dosage if these are low. You should have labs done at about 6 weeks... TSH, Free T3, Free T 4 at the least."

Agree with all of that. Forgot to mention it in my below comment.

I take Vit D and K2 for low Vitamin D and I do think its helped.

archipoeta53 profile image
archipoeta53 in reply tophoenix23002

Splendid reply. Succinctly and beautifully put.

LoopyLuP profile image
LoopyLuP

I'm looking to swap over to NDT as well. I tried to "optimally medicate" on the T4 but still have symptoms of hypothyroidism, and ended up over medicated (which was horrible) so now sat with a TSH at 0.42 but still not right :-( I'm under DR Myhill and she's agreed that I try NDT. She's advised that I start on 1grain AM, 1/2 grain lunch time and 1/2grain tea time. To start with. I'm currently in 175mcg of T4 which I take 100mcg AM and 75mcg around 5pm. I will let you all know how I get on. With this, initially just upping the T4 and splitting the dose helped some of my brain fog and headaches but the other symptoms still remain. X

adin profile image
adin in reply toLoopyLuP

I think is to much for the start(is 2 grain there).

lajoska profile image
lajoska in reply toLoopyLuP

If you go NDT you will feel better!

You could do a straight switch or bit by bit.

I did it bit by bit - reduced levo while upping ndt. If i had to do it again i would just do an immediate switch ie ditch all the synthetic stuff and start with ndt only, say 1 tab and move up gradually

adin profile image
adin in reply to

Sorry for resuming the discussion but I'm curious how long took you the transition and what it means " bit by bit ".

I tried to swap directly into ndt from levo (1grain split in two) and on day 5 I crashed. I felt very low, undermedicated, it was unbearable. Now I go back to ndt+levo and try to gradualy increase the ndt and decrease levo. I think the levo drains too quickly from my body and the ndt has no time to grow,this is my feeling.

Thank you.

sofluffy profile image
sofluffy

Wow, where to start?!

Firstly, you'll need to either get it on prescription from your doctor or endocrinologist (very difficult) or source it yourself. I can PM you the source I use if you like.

Then, read up on how to dose and how to know when you reach your optimal dose. I strongly recommend buying the STTM book for this - it's amazing.

I took my last Levothyroxine (t4 only) one day, and then started the NDT (I use Thyroid S) the next day, starting on 1 grain, split over the day. I took half an hour before breakfast, the other half mid afternoon. I didn't feel any better after 10 days, so I increased by half a grain a day. You raise by half a grain every 1-2 weeks depending on symptoms, until you reach the 2-3 grain area. Then you slow down and hold it for 4-6 weeks between increasing. If you need to.

You'll also need blood tests doing to show how you're doing in that. When optimal, you're looking for a suppressed TSH, Free T3 upper part of the range and Free T4 mid range.

I got to 2 grains a day, felt a lot better but not 100%. Had my blood tests done and my TSH and Free T4 was good, but Free T3 was too high, indicating 'pooling'. This is where the T3 stays in your blood and doesn't reach everywhere it should be in your body, which is why I didn't feel completely better on it. This is often caused by adrenal glands dysfunctioning. So I had a 24 hour saliva test done, and this revealed cortisol high at all 4 points. My adrenals were dysfunctioning! I'm currently working on correcting this with Holy Basil. I expect this to be my last 10%. :)

It's worth bearing in mind that many doctors won't help you do all this. I've done it all by myself, going private and doing my own research. I run my own Facebook support group so I see a lot of these cases.

Good luck!

adin profile image
adin in reply tosofluffy

I tried take 1grain ndt (split dose) and I don't know for what reasons next day I felt awful(very low and collapsed) and go back to the mix, levo+ndt. I hope in the near future to be able drop my levo and up the ndt. I also tried the levo+T3 mix but not worked well for me and I' ve got vry bad acne on my face.

sofluffy profile image
sofluffy in reply toadin

You need to give NDT a good week or two to start kicking in. Your body won;t have had direct T3 for quite some time and it takes some adjusting. The first 3 days on NDT for me were hell. I thought I was dying lol.

adin profile image
adin in reply tosofluffy

I understand, thinking about and try again(just ndt). Thank you very much for advise.

sofluffy profile image
sofluffy in reply toadin

No worries :) Happy to help. We're all in the same boat here!

SilverAvocado profile image
SilverAvocado in reply tosofluffy

I've also felt terrible at some points during the process. My first 2 days on NDT were some of my worst ever. But within weeks it was the best I've felt - even on just 1 grain.

LAHs profile image
LAHs in reply tosofluffy

Sofluffy that's Sofunny - first 3 days you thought your were dying!

I wish those bl**dy useless Endo's would read this forum so that they know what we have to muddle through to get well, trying this and trying that to find out what they were supposed to have learned in Med. school.

sofluffy profile image
sofluffy in reply toLAHs

Exactly! They think we're all mad. So many of us take it into our own hands and have no other option than to self teach and trial and error. We're so desperate, while they're sat in their office, earning £100,000 and thinking they're doing a grand job!

I just wish they would listen to us and READ.

Joyia profile image
Joyia in reply toadin

Evening Primrose Oil is said to help acne.

helpme2 profile image
helpme2 in reply tosofluffy

What is your facebook support group my daughter says she will help me with this as I am not on facebook and what is STTM book please? Thanks Jasmina

thyroidnodules profile image
thyroidnodules in reply tohelpme2

I would like to know what STTM book is as well please

sofluffy profile image
sofluffy in reply tohelpme2

The facebook group is here: facebook.com/groups/4495863...

And STTM is Stop The Thyroid Madness. They have a website and this is the book - amazon.co.uk/gp/product/061...

SilverAvocado profile image
SilverAvocado

I think taking temperatures and pulse are essential. Get at least a week of measures before you make any changes. The numbers start making sense once you can look at the overall pattern.

LAHs profile image
LAHs in reply toSilverAvocado

Yep, agreed. That is what I do to make sure I am not overdosing, and what made me realize I was under medicated (Basal Temp more than one degree F below normal, pulse OK at 60 bpm but blood pressure elevated.)

lajoska profile image
lajoska in reply toSilverAvocado

Hi,tell me please why is so important to check the body temperature and pulse before you increase your NDT

lajoska profile image
lajoska in reply tolajoska

And how to read the result

SilverAvocado profile image
SilverAvocado in reply tolajoska

Lajoska, these measures both give an indicator of how fast your metabolism is running. When hypothyroid your temperature will be low. Pulse is more complicated, as it can be high or racing when hypo, or slow.

It's important to do it regularly, as the pattern of change for you is more meaningful than the absolute values.

jacrjacr profile image
jacrjacr

I had to slowly transitions, at first I had more aches and pains but read that sometimes that happens and push through it so I did and surely 2 mths later it kept getting better but I started on a very low dose, and for some that t3 rush can get a little getting used to but that goes away the longer you take it.....at first I had to take at least 6 hours apart and took at 6am in the morning and then at noon b4 lunch 30 minutes and then took vitamins at 4pm......4 hours later.....or I took vitamins a lunch and last dose at 4pm......I am glad I stuck with it now......so much better.....and now I don't get the t3 rush and can take closer together if I wake up too late etc.....t3 doesn't last long in the body which is why I divide my dosage ....more level energy

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