Moving from Levo/T3 to NDT experiences

[Jefner]

I am wondering, after all these years, whether Levo and Liothyronine isn't the answer for me. I have read in many posts that many have moved over to NDT and doing much better.

I am looking for comments please from ANYONE that made the move to NDT and your experience in doing so, whether it be positive or negative. If the responses are more positive than negative, I may discuss the option with my GP on Monday (if she decides to turn up this time)

Was it also difficult and a long winded process in finding the sweet spot?

[GlowCoach Administrator]

Until you get your FT3 over 50% and reduce your Levo a little I don't think you can say that the T4/T3 combo isn't working. You need to give it a full run. You're pretty close to getting your FT3 off the floor, so switching now might be counterproductive and set you back further.

It's far harder to fine tune your dose with NDT than it is with T4/T3.

I hope some members come along with personal experience of this.

[Jefner in reply to GlowCoach]

i thought it might be harder, why is everything so damn difficult lol. My levels are always so up and down on every damn test so I don't think I will ever get my levels even tbh but I have downed the T4 by 25mcg and I think I will move my first dose of T3 from early morning to lunchtime, to see if it makes a little bit of difference to my anxiety levels because of my high morning cortisol

[GlowCoach Administrator in reply to Jefner]

When do you take your second dose? Have you tried it at bed time?

[Jefner]

I have shuffled stuff around so much over the years trying to fit all my meds and supps in I can't remember half of it now. I usually have my second dose around 5pm because I don't have my breakfast until around lunchtime as I am still working on getting my sleeping patterns back to some sort of normality.

Only time I had it at bedtime was before I tested the next morning but haven't otherwise as I take Magnesium about an hour before I go to bed and I try and keep stuff away from each other

If I do move my first dose to lunchtime, my second will be around 7'ish because I don't have my evening meal until around 8-9pm and a small sandwich around 5'ish

[Panda_26]

I switched many years ago and it was relatively straight forward but don't expect for a minute your gp to be onside ! Most know very little about it , so you'll probably have to find a private endo who's open to ndt . You'll also have to self fund it and getting supplies sent over from abroad isn't always easy . If I were you I'd make certain there's no other combo that works for you first as this routes not without its complications!

[Verde1]

Hello,

I went to see an endocrinologist in January to discuss how to help me with symptoms and get better. Explained to her and shown her a study done by tyroid org in US that people were more happier and less symptoms with NDT she told me NHS doesn't do it. If you want you have to do it privately. NHS according to her doesn't. they just started aproving combined T4/T3.

What usually people feel better than with just T4. In my case she told me if wanted to have a go to try T4/T3 to ring back to start with blood test and discuss.. as she asked for cortisol blood i thought she was going to help me. To find out that she dismissed me from the clinic.... without even discuss the cortisol results with me.... good luck for you but think Jaydee is right. Try for a bit longer try to adjust

[grumpyold]

I agree with Panda26.

I asked the endo my GP had referred me to, if I could try NDT and he dismissed it straightaway, calling it " pure quackery ".

For a year, I sourced my own (Armour) and self funded until I could no longer sustain the expense. For that year, I felt amazing. I gradually titrated up to 3 grains, the 3 stone I had gained on levo came off almost effortlessly and I felt like I got my life back.

That was back in 2008. When I could no longer afford to continue ordering from abroad, I had to go back onto NHS levo, and all my old problems returned.

It is only this past year, since I began self sourcing and self funding T3, that I have begun to feel half human again. If I could have afforded to continue with Armour, I would have, because nothing I have tried since, has suited me so well.

[shaws in reply to grumpyold]

The 'Endo's response is stupid:-

re NDT and" he dismissed it straightaway, calling it " pure quackery ".

He has no knowledge of NDTs whatsoever as it was the very first thyroid hormone replacement that saved people's lives from 1892 and still does today. So it certainly isn't "pure quackery".

There were no blood tests available in 1892 and it was all down to how the patient's doctor relieved the clinical symptoms by prescribing NDTs and I assume dose was slowly increased until patient was symptom-free.

[Litatamon]

If you self-source your NDT the positive note is you could keep your T3 prescription, just in case.

I read about a situation where someone was gaining or plateauing with weight (& other symptoms) on NDT but felt good with her choice in general; her doctor added some t3 and she felt fantastic. And lost all the weight as well.

I know everyone is different but it would be wonderful for you to have that option.

Not to mention being able to easily go back to T4/T3 without a blip if needed.

All the best to you..

[serenfach]

The move to take T3 from years of feeling ill in just T4 changed me to someone who was nearly well very quickly. I tried NDT and felt better. There was a time I took one that was a duff batch and went backwards fast. Now on Thyroid-S and am fine. My sweet spot seems to move so I up by half a pill, or down by half a pill, but I know how I should feel and if I cut a pill in half and my hand moves to the larger half, I know my brain is telling me something. Currently on 2 and a half, with one whole one at bed time. I hope this helps.