Levo + T3 v's NDT? : I would love to hear from... - Thyroid UK

Thyroid UK

137,720 members161,504 posts

Levo + T3 v's NDT?

Vikkiod profile image
14 Replies

I would love to hear from anyone that has had experience of some kind of NDT and then successfully switched to a T4 /T3 combo or vice versa?

I was on 100mg of Levo then had 18mths on 1.5 grains of Nature Throid. Switched back to Levo due to cost & convenience. Started to add T3 2 weeks ago as T4 alone wasn't working for me (not a great converter😕).

I suppose i'm wondering if I should just bite the bullet, raid the bank & start back on the NT or whether my T4/T3 combo will do an effective job when i find the right dose. Currently 75mg Levo & 10mcg T3.

Can the synthetic be as effective as the 'natural'? X

Written by
Vikkiod profile image
Vikkiod
To view profiles and participate in discussions please or .
Read more about...
14 Replies
SeasideSusie profile image
SeasideSusieRemembering

Twenty years ago I went down the NDT route, then NDT plus T3, then T3, all under the guidance of the most respected private doctor. It didn't work for me. After two years I ran out of money for private consultations and private meds and went back on Levo.

All these years later, doing far more tests than were ever suggested back then and addressing problems discovered, I now self source T3 and add it to my prescribed Levo. I'm still tweaking but am much better than I was.

So it's down to discovering what the problems are, addressing them, and finding the right meds for us as individuals​.

I think that as you've only been on a levo/T3 combination for two weeks, you really need to give it a fair go. It took months of tweaking doses before I could say I was definitely feeling the benefit. Don't forget that with the synthetic combo you have much greater control over the ratio of T4 to T3 and you may find it easier to find your optimal dose with that rather than with NDT.

Vikkiod profile image
Vikkiod in reply to SeasideSusie

Thanks for that. In hindsight I was great on NT but that is so expensive now. I do feel better already by just adding the 10mcg of T3 so I might leave it another week or two and see how I feel. I could always add a bit more. It's so cheap in comparison to Nature Throid! The flexibility is also ideal. I really appreciate your input and hearing your story has really given me more confidence in the combo. Million thanks. X

in reply to Vikkiod

After visiting literally hundreds of thyroid forums over the years (since being diagnosed with Hashimoto's disease 17 years ago), I know some people do better on synthetic thyroid drugs, some do better on NDT, and some seem to do equally well on both. So it's really trial and error.

Some claim that the other hormones in NDT (T1, T2, and calcitonin) also play a role, but I am not sure which one to be honest. Since many hypothyroid patients do well on synthetic drugs only, I guess they are not indispensable...

If you find NDT too expensive, there are three Thai brands of NDT available at a fraction of the cost of Armour, Naturethroid, etc. They are ordered over the internet and cost ca 100 USD for a bottle of 1000 pills. They are only available as 1 grain (60 mg) pills but can be cut into halves or quarters if needed.

I have used synthetic T3 and T4 in the past (combo drug Novothyral) and am now on Thai NDT. I felt good on synthetic thyroid drugs as well; the only difference I've noticed is that synthetic T3 seems to raise my heart rate more than NDT, suggesting to me that synthetic T3 is more fast acting. But that could also be because I take a brand of NDT called Thyroid-S which apparently contains a slow release substance.

katey profile image
katey

Hi vikkoid, this is a really good question. Does anyone else have any opinions or experience to share?

Vikkiod profile image
Vikkiod in reply to katey

Thanks Kathy, yes really interested to hear personal experiences & advice. The flexibility of doses seems to be one of the advantages of the T3/T4 combo. X

Vikkiod profile image
Vikkiod

Wow! Ok that's pretty extreme. Could you please let me have a bit more info when you get a minute. I appreciate you are probably really busy. X

Hashihouseman profile image
Hashihouseman

Good Question ! l have been on the horns of this dilemma for 2 years. Tried NDT, synthetic T4 alone and with T3 and to supplement T4 levels in NDT. My problem seems to be chronic intolerance to Levothyroxine, I feel very unwell, psychotic even on synthetic after a month and it never settles even after 6 months. However although NDT works much better it leaves me will ever decreasing T4 levels and upping the dose to anything over 15 µg of t3 in NDT is also intolerable, even if I divide the dose 4-6 times and take most overnight. The endocrinologist is totally useless and even the more switched on private endo seems to think it's all in my head! Well it isn't and I have years of private and NHS blood tests to show for it. Have done extensive review of research and academic texts and medical opinions which helps personal understanding and realisation that many clinicians over-simplify or are prejudiced or biased or ignorant! There is a particularly comprehensive and relevant paper on how to approach combination therapy published in 2012 and yet those of us that may well need it are all too often being left to fend for ourselves or suffer because authoritative advice like this is unknown or ignored. Anyway the paper is by no means a wholehearted advocate of combination therapy but it does seem to cover many of the arguments and issues in order to make sensible recommendations for those who are considering combination therapy that isn't NDT ! Here's the link .....

karger.com/Article/FullText...

Oh, and its advice to experiment with this under supervision of a qualified person is vital, problem will be finding one!

Vikkiod profile image
Vikkiod in reply to Hashihouseman

I think we would all love to keep trying diff meds & combos until we felt well under the supervision of a doctor. The problem is that most of us on the forum are far better educated in terms of the thyroid than most of them😕 Sad but true. Thankfully we all have the support of this amazing group which gives us the confidence we need to find our own solutions to our very individual health issues. Thanks so much for sharing & good luck with finding your perfect combo & doseage. X

Hashihouseman profile image
Hashihouseman in reply to Vikkiod

I have found this to be the case for me too, often seeming to know more about managing hypothyroidism than the average GP, or even the average endocrinologist!. My comment about us seeking supervision is partly serious partly ironic and partly because I believe we should keep pushing these issues back at the clinicians because its only then they will be motivated to be better themselves and take more of our voices seriously. I suspect that taking our knowledge back to our doctors is what motivated that European Thyroid Association of professionals to respond and produce that report I linked you to. That report has a split personality because we keep taking the issues back to them. That report continues to try and maintain the all or nothing significance of their standard treatment, and yet goes on to explore and almost explain why many of us continue to suffer, it even makes recommendations to treat patients with combined therapy and to investigate further. All of those are actually wins we need to pursue. If we wash our hands of the medical establishment it will be a kind of apartheid, they will go their way we will go ours, we should all be working together, as equals.

mtcorr profile image
mtcorr

Hi Vikkiod

I switched to Thiroyd NDT in Nov16 after finding this forum. Like the other comment I will never go back on Levo I feel it robbed me of 25years of my life. As well as the ndt I supplement and stay gluten free. I am nearing my fiftieth birthday and I feel amazing. I have lost 18lb since January and I don't miss the chronic pain, brain fog, hair loss and skin rashes! It did take some tweaking to get the dosage and times right for me (we are all different). People are now commenting on how I look and this is for someone who used to avoid mirrors like the plague.. they also ask how and tell them and direct them to here. Oh and last w/end I walked 8.85 miles of the challenging walk of the Ulster way followed by 2.5 miles the next day with no adverse effects if I had still been on Levo I think i would have been in a coma lol..

Vikkiod profile image
Vikkiod in reply to mtcorr

You are an inspiration to us all! What a fabulous success story. I do know that foggy T4 coma feeling! Mines def been slightly relieved since adding the T3. I'm going to see how things feel over the next few months (although I do often feel better during the spring/summer anyway). I know that I can always go back to NDT. I did get some Thiroyd before I started the Naturethroid but I didn't really get on with it. I didn't feel anything...so I moved on. Maybe I didn't give it long enough? Anyway I loved Naturethroid from the very first day I tried it so I know that one works for me. We are all so different, aren't we? Thank goodness we have the support of the forum. Thanks for sharing & keep up with those challenging walks. X

mtcorr profile image
mtcorr in reply to Vikkiod

It is all down to all the contibuters to this forum (I direct everyone to here) and I read everthing. I think my turning point when I took ownership of my health no Dr or endo was going to look after me better than me. Then the scary part was ditching the Levo and starting the ndt but I had my families full support. I soon learnt that I had to experiment and listen to my body and not be afraid of slowly increasing. I used to take,when required which was a lot) naproxen, cocodamol 15/500, Brufen, migraleve, antibiotic for roscea and various cream for rashes. I haven't taken any since switching. Once plagued with headaches and migraines I haven't had one. The girls at work are taking me away for a surprise w/end for my birthday I could end up doing anything but for once in my life I am truly looking forward to it not the usual dread that comes with being hypo and the sickly person in the corner. I would encourage anyone thinking of changing (to whichever method is right for them) to just do it, what are you waiting for, you need noones approval but your own. Best of luck and I hope everyone's journey is as successful.

I would add one caveat if anyone is expecting a tablet alone to work without addressing your diet, lifestyle and vitamin levels then it's just not going to work.

Vikkiod profile image
Vikkiod in reply to mtcorr

I agree - diet is a medicine in itself. All the vitamins & supplements are crucial too as we've been ravaged due to our hypo state. Your weekend sounds like fun. Enjoy. X

Vikkiod profile image
Vikkiod

That's one heck of a journey. Thank goodness he's in a better place now. Just shows that we are all different and need different meds. Imagine if they only had 1 type on antibiotic or 1 painkiller? It's ridiculous that we are all only offered Levo. Thanks for your reply. Good luck with your wellness journey❤️

You may also like...

NDT versus Levo/T3 & Vitamin support Advice

are my last bloods before starting NDT. Should I now stop and go back to levo and supplement with...

NDT to levo + T3 conversion?

changing over to Levo plus T3 (unless you have other suggestions). I'm taking 2.5 grains of NDT...

headaches when moving from NDT to t3 and Levo.

dropped my NDT from 200mg to 40mg and started the t3 2 weeks ago expecting to start Levo a few days...

T4 in Levo v T4 in NDT

Taking NDT I have often wondered how long the T4 in NDT starts to work and how. In Levo everyone...

Increase NDT or Switch back to Levo+T3?

forward to my latest results a month ago on 1.5 grains Nature-throid: TSH was 0.695, FT4 was 0.86...