3 month trial of NDT: After years of not feeling... - Thyroid UK

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3 month trial of NDT

Axleg profile image
11 Replies

After years of not feeling right on Levo Thyroxine and having to do a private Blood test to prove I am not converting T3 correctly I have been offered a 3 month trial of NDT.

Does anyone have any advice of which brand to go for? Does one do anything better than the other or is one easier to get in the long term than another?

Any info would be great, thanks.

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Axleg profile image
Axleg
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11 Replies
marsaday profile image
marsaday

Why haven't you gone to the next stage and try T3 added to the T4 ?

Axleg profile image
Axleg in reply to marsaday

I think mainly there is no route via the NHS for T3, if anything they are stopping it as we all know. I have got some T3 but not yet gone down that route, I wanted to speak to the consultant first to see what he thought. Why do you think added T3 would be better than the NDT route?

Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Axleg

You can have it on NHS. And after the consultation highlighting the current situation, it's likely to be reinstated across all CCG's

(Yes I am an optimist!)

Look up your local CCG guidelines on Liothyronine

Eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

Excellent summary by the Patients Association

patients-association.org.uk...

Mike374 profile image
Mike374

All the main brands of NDT are essentially the same, usually coming in 60mg tablets (1 grain) of thyroid extract, with each pill containing approx 39mcg T4 & 9mcg T3 (the key active ingredients). The only thing that will differ between brands are the fillers used to bind the active ingredients - different makes use different fillers, with some brands using more/less fillers than others. Some users prefer particular brands (they just seem to work better for them) but basically all mainstream brands should be equally effective.

Axleg profile image
Axleg in reply to Mike374

Thanks for the info..

marsaday profile image
marsaday

Well T3 seems more supported than NTH, even though it is being squeezed out BUT i think that will change eventually as it is not a drug, just a simple hormone and so really the NHS should see reason to source it cheaply.

Also you cannot compare NTH to T4, they are entirely different because NTH is T4 and T3 essentially. So you would need to try T4 and T3 first to see if the T3 element is the bit you are missing. If still not well then i would try the NTH route.

If you get the T4 on the NHS, it is pretty cheap to get some T3 from europe. So you still get help within the NHS, but add a little T3.

ALSO T4/T3 allows the user to work out their own ratio of T4 to T3. This is key quite often and some people need a little bit of T3, but others need a lot.

SlowDragon profile image
SlowDragonAdministrator in reply to marsaday

I would agree, for many NDT has too much T3 in proportion to T4.

Plus more endo's will consider prescribing T3, but will not consider prescribing NDT.

A private prescription for T3 means you can source from France or Germany very cheaply and easily IF your CCG initially refuses. You can then appeal via individual funding request for 3 month trial on NHS and lobby MP etc

Axleg profile image
Axleg in reply to SlowDragon

Thanks very helpful. I've got some T3 but didn't want to start it until I see if the NDT is successful or not. It's a minefield but the annoying thing is the time it takes to do anything...

SlowDragon profile image
SlowDragonAdministrator in reply to Axleg

I opted for T3 because I find taking T4 at bedtime most successful

T3 I split in 3 doses during day (on advice from endo)

6am, noon and 6pm approx

10mcg, 5mcg and 5mcg

LAHs profile image
LAHs

I have found Activis/Forest Amour thyroid to be great but it is expensive. You might want to try the "adding T3" method first because it is a lot cheaper. You will have to put some effort into sourcing the T3 and I am not up to date on how you do that now. I used to get mine from Greece, UniPharma but I think that has changed now according to recent posts.

Axleg profile image
Axleg

While I'm waiting for the NHS to sort out my NDT I've stated taking 6mgs of T3 along side my Levothyroxine 150mgs a day. I've not found any difference yet, didn't expect to straight away. How long would you give it before increasing the T3 level and would you reduce the Levo at the same time?

My TSH on the above does is 0.4 with the T4 at 19, it was just the T3 at 3.1 that was lacking.

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