NDT β€” your experiences please πŸ™πŸ» : Hi all... - Thyroid UK

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NDT β€” your experiences please πŸ™πŸ»

KettlebellQueen profile image
β€’5 Replies

Hi all β€” after 5 years of trying to stabilise on T4/T3 combined treatment with LDN for 3 years, my endocrinologist has suggested I try NDT (EFRA).

I am extremely concerned given my past experience of not feeling any better on T4, and then only marginally better on T3 for periods of time (the latest setback was due to Covid β€” every time I get covid it affects thyroid function), that this could be a similar, or worse, experience.

Please comment with your experience of NDT to help dissuade my fears. I cannot continue as I am, the symptoms are too bad.

Thank you πŸ™πŸ»

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KettlebellQueen
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5 Replies
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Buddy195 profile image
Buddy195Administrator

As it’s been over a year since you last posted KettlebellQueen, can you share your most recent thyroid and key vitamin blood tests. What is your current dosage of Levo and Lio?

KettlebellQueen profile image
KettlebellQueenβ€’ in reply toBuddy195

Thank you for your response.

I took bloods back in Feb (8 hours after last dose meds). Dose was Levo 50mcg, lio 40mcg, LDN 6mg.

Results: T3; 4.4, TSH 0.57, T4 7.4

Then, Dr put up T3 to 60mcg and next read (3 hours after dose as GP booked test)

0.07 tsh

9.8 T3

7.4 T4

So Doctor then lowered T3 to 30mcg (which has caused my hands to swell up, face to become puffy and I am exhausted). Wants to increase T4 to 75mcg but in the past my RT3 has been high and Levo makes me feel ill.

Vitamin D was elevated at 380 β€” so I have stopped supplementing. Calcium and phosphate were normal. B12 was 1000.

Thanks πŸ™πŸ»

Buddy195 profile image
Buddy195Administratorβ€’ in reply toKettlebellQueen

Please can you add ranges (in brackets after results) as these can vary between laboratories. Any results for ferritin, folate, B12?

Jazzw profile image
Jazzw

There are a lot of us here on NDT, if that helps to allay your fears even a little bit. I don’t take ERFA but I’ve taken Armour for over a decade and for the most part have been very settled on it.

It’s one of those things, how some meds, despite containing thyroid hormones in equal amounts, suit some and not others. But we are all different and the way our guts absorb and process nutrients etc varies enormously.

I’ve read before (and would ideally provide a reference but I’m short on time, sorry) that the molecules of thyroid hormones in NDT are bound together differently, which when it comes to digestion and absorption (breaking apart again to be utilised) means they’re a much better fit for some than synthetic hormones like levothyroxine and liothyronine.

It sounds like you have everything to gain and nothing to lose.

But it would be interesting to know whether you are currently on the right amount of thyroid replacement and whether your vitamin and mineral levels are optimised. Getting the levels right of all these things is vital for feeling well.

serenfach profile image
serenfach

I never felt well on just Levo, huge improvement when Lio was added and when they said they would take the Lio away, I went my own way and took NDT. It has been a few years now, and although not everything is tickety boo, it is a darn sight better than it was. I get mine from Thailand. You wont know until you try, but I think it is worth having a go to see how you get on.

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