Has anyone whose tried T3 and NDT felt better o... - Thyroid UK

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Has anyone whose tried T3 and NDT felt better on just T4?

Spangle15 profile image
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A little bit of history - thyroidectomy aged 21. More or less fine on just T4 for 20 plus years. I then saw an Endo about parathyroid issues in 2018 at which point he suggested ERFA because he felt lots of my symptoms were related to my thyroid and T3 conversion. Since then I’ve tried many different doses of T3/T4, ERFA/T4 and briefly just ERFA but except about a week in 2022 when I felt “normal” I’ve never felt great. That week was after I’d been back on T4/ERFA for about a month after just T4 for 6 weeks (having stopped T3).

Hopefully that makes sense. But I now wonder if T3/NDT just isn’t right for me.

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VSHchocolate profile image
VSHchocolate

I would be interested in responses to this I was previously on Levo for 22 years and felt ok, then they started changing my doses and I felt dreadful but endocrinologist wouldn’t change anything. I have Armour NDT prescribed privately and feel better than I did but only have the occasional day when I feel really well. I have an appointment with NHS endocrinologist soon to discuss them prescribing T3, I am wondering if it will make any difference.

pennyannie profile image
pennyannie

Hello Spangle :

I'm with Graves post RAI thyroid ablation 2005:

I was ok on T4 monotherapy for around 6/7 years but then not allowed to run on a suppressed TSH and my T4 dose decreased and ultimately became extrememly unwell - details on my profile page ;

I started self mdication in 2018 - I first ensured my ferritin, folate, B12 and vitamin D were all up and maintained at optimally so to give myself the best chance of finding an alternative to T4 monotherapy.

A T3/T4 combo did work but I found the T3 a bit too powerful compared to NDT which I find much softer on my body and which I have now been taking for some 5 years.

NDT does take time to bed in and settle in the body - and does not present in the same way in blood tests as the synthetic T3 and T4 treatment options.

When optimally medicated on NDT you will likely have a suppressed, low TSH and a T4 likely lower in the range but with aT3 proportionately higher in the range -

which can confuse some doctors interpretation which results in your not being optimally medicated.

Spangle15 profile image
Spangle15 in reply to pennyannie

Thank you.

AKatieD profile image
AKatieD

Would have thought in general no, as most people start on T4 and only go to NDT and T3 if the T4 does not work for them, so you are probably not going to go there if T4 is ok.

grumpyold profile image
grumpyold

I have tried T4 alone, NDT and T4/T3 combo.

I was on T4 for about 10 years, becoming increasingly overweight and unwell.

Following much reading, research and an appointment with the wonderful Dr. P, I went onto NDT, self sourcing and self funding Armour. I felt amazing for the year I took it. Back to my "normal" self and the 3 stone I had gained on T4 melted away almost effortlessly. I was unable to afford to continue, so went back onto NHS T4. Regained a stone of the weight I previously lost and definitely wasn't feeling as good as when I was on Armour.

I had to go back onto NHS levo for the next few years until I managed to self source T3. For the past 2 years I have been on T4 / T3 combo.

I'm still finding a T3 which suits me. Recently switched from Roma capsules to Thybon Henning and I am feeling better already and have lost 3 pounds without hardly trying.

So, in answer to your question, no, I never felt better on T4 alone.

But we are all different of course, so what suits me, may not suit you. It's such a puzzle....I hope you can work out what suits you best.

Spangle15 profile image
Spangle15 in reply to grumpyold

Thank you so much for such a detailed reply, it’s very helpful.

grumpyold profile image
grumpyold in reply to Spangle15

You are welcome.

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