Should I transition from t3 only to NDT? - Thyroid UK

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Should I transition from t3 only to NDT?

Gooliajj profile image
15 Replies

Hi everyone,

I’ve been on t3 only 50mcg per day and using Paul Robinson’s circadian method. I feel great. I have more energy, I’m always toasty warm with my afternoon temps at 37°c, my mood has improved... life is good!!

My recent blood work and cortisol is:

Ft3- 4.47

Ft4- 0.32

TSH- 0.005

Cortisol- 11.8

However, I recently discussed everything with my doctor who now wants to drop the t3 (50mcg per day) only and transition me back onto NDT 1 grain per day (which I was on beforehand but didn’t do well on and was more hypo while taking NDT ).

I’m really worried that going back on NDT is going to make me feel worse again. The doctor’s reason for putting me back on NDT is to see if my own thyroid will work properly again and if not even talked about putting me on t4 only!!!

Should I trust my doctor and do what she says or should I take my health into my own hands and stay on t3 only? If I do stay on t3 only, will that stop my own thyroid from ever working again?

Any input would be gratefully received.

Thank you

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Gooliajj profile image
Gooliajj
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15 Replies
TSH110 profile image
TSH110

Sounds like a trick to me to dump you back on T4 - refuse and demand to stay on what is making you feel well, your current T3 dose.

If you have Hashimoto’s the antibodies will eventually destroy your thyroid so why it should suddenly work properly again when under an irreversible assault is to me absurd. You might get sudden releases of thyroid hormone as it dies bit by bit but this is temporary and will more likely make you feel hyperthyroid. The best way to reduce this is to keep the antibodies down and thyroid hormone. replacement should help. If your hypothyroidism is caused by pituitary problems (a lot rarer than autoimmune) I cannot comment. See what others more expert say in response.

SeasideSusie profile image
SeasideSusieRemembering

Gooliajj

Your opening paragraph says it all, backed up by

"which I was on beforehand but didn’t do well on and was more hypo while taking NDT"

It's a no-brainer! Why allow your GP to make you unwell again?

Jazzw profile image
Jazzw

“Should I trust my doctor?”

No.

The clue is in the words, “to see if my own thyroid will work properly again.”

He wants you to be his pet experiment? Er, no. No!

Kitten1978 profile image
Kitten1978

You already know what you need to do: take your health into your own hands and stay on t3 only.

Your doc is either an idiot (if he think your own thyroid would ever work again o ndt - it won't) or he is UNETHICAL (if he is using this lie to trick you into changing from T3-only to ndt).

Singoutloud profile image
Singoutloud

I went from T3 only to NDT out of necessity due to the shortage earlier this year. It was OK but never felt as well as when on T3 only and t4 is out if my system. I'm T3 only again now and doing ok (apart from a recent hiccough with a new brand)

I would say that if you're doing well on T3 only don't rock the boat. Stand your ground and say no.

greygoose profile image
greygoose

I agree with everyone else. Why on earth would your thyroid start working again? If he really believes that, he's an idiot, and someone should tell him that thyroid hormone replacement is not a cure for sluggish thyroids, it doesn't 'kick-start' them (had a GP who believed that) or in any way make them work again. And if he doesn't believe that, then he is a cheater and a liar, and who wants a cheater and a liar for a doctor?!?

Having been through this myself - T4 only > T4 + T3 > NDT > T3 only > NDT > T3 only - I will never allow myself to be willing coaxed or bullied into taking any form of T4 again. You know what makes you well, stick with it. :)

Your thyroid isn't ever going to work right again or it wouldn't have been not working for the last 20 years. Stay with what makes you feel well. Doctor is not being honest or sensible.

Gooliajj profile image
Gooliajj in reply to Angel_of_the_North

I really don’t know when my thyroid stopped functioning properly, probably 11 years ago triggered by pregnancy. Hypothyroidism, slowly crept up on me until I was diagnosed in June this year.

So is it really the case that once your thyroid stops working properly (high rt3 levels in my case, which have now lowered thanks to t3 only) it will never be the same again unless your on meds?

Angel_of_the_North profile image
Angel_of_the_North in reply to Gooliajj

As far as I know, once the thyroid becomes unable to produce enough hormones to keep the body running that's that. Don't think pituitary problems fix themselves either.

Before NDT was discovered, thyroid problems were a ticket to dementia and death.

A very few people report improvement/remission in early stages of Hashis, but as far as I know no one has ever followed their progress for years afterwards, so they could just be reporting a hyper or euthyroid stage/swing in the progress of hashis

"I feel great" - There's nothing more to be said or done, other than more of the same! ((Unless your Dr is performing medicine according to the dictates of the CCG budget, in which case her behaviour makes perfect sense ...)

Clutter profile image
Clutter

Gooliajj,

1 grain NDT is equivalent to 25mcg T3 so your doctor is only offering you half the dose you are currently feeling well on. If you are considering agreeing insist on 2 grains NDT. Personally, I would stick with the 50mcg T3 on which you feel well.

Kell-E profile image
Kell-E

I'm in no way saying that I think you should go back to NDT, but just as a technical point...1 grain of NDT is in no way equivalent to 50 mcg T3. 3 grains would be more like it. If you were really on 1 grain, no wonder you didn't do well.

Gooliajj profile image
Gooliajj

Thank you everyone for all your support.

I’ve decided to go it alone and follow your advice as well as my gut instincts to stick with the t3 only.

Just wondered what anyone thought of my blood work results?

Another question which I’m sure everyone asks is how to go about weight loss?

I’m on a paleo style way of eating and have been even before having thyroid issues. However I’m now much stricter and have cut gluten completely. A while back I also did an elimination diet so there are a few foods like coconut, garlic, dried fruits, apples etc that I steer clear of.

Exercise wise I walk 10-15 thousand steps a day with tennis once a week, but even so the weight still isn’t coming off.

What else should I be doing?

Lolojeebs profile image
Lolojeebs

I have been hypothyroid since childhood. Never had issues converting the T4. And I'm now trying to convert to NDT from T3 because it is giving me tremors, bone pain, muscle weakness, joint pain and hot flashes. I already have a fast, pounding heart rate from POTs so my adrenaline is already too high and gets worse with T3. I had no problems on NDT or T4 before but a STTM group now called TAWKI on Facebook recommended that I should be on T3 when on Cortisol and Florinef. I'm on very low doses of the steroids but the addition of T3 is not only causing so many issues but I can't afford it. Too expensive. I'm having trouble converting back to NDT now. I've tried all at once and little by little but it's like I'm on none at all and I collapse. I wished I had never listen ed to these so called experts on the FB group. I think that once we are on T3 it is impossible to go back on NDT or T4. It's the same thing when I had switched from T4 to NDT, couldn't go back on T4. I hate this so much. So frustrating and the side effects are too bothersome for me.

charley123 profile image
charley123 in reply to Lolojeebs

Hello i'm in the same boat. Was doing well for 2.5 years on t3 only and then got problems. Before t3 only was on NDT what also worked. Now was on NDT again but it dont work. T4 also not. I think the same like you it is not possible go back.

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