Add t3 or switch to ndt? : Hi there, after my... - Thyroid UK

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Add t3 or switch to ndt?

Rkx212 profile image
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Hi there, after my post a couple of days ago and the good help & info I received from members about t3, I started to think of the different options... If I have never been asymptomatic on levothyroxine should I be thinking of adding in t3 to address the issues or swaping to a ndt instead? Can anyone let me know the pros and cons of going with 2 separate synthetic meds versus one combo natural med?

Thanks in advance.

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Rkx212
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Heloise profile image
Heloise

There are many people on the synthetic combo, in fact I think they are making one tablet with both synthetics. Some believe NDT is superior because it contains T4,3,2,1 and calcitonin which is what your own thyroid produces. Stop the Thyroid Madness website feels T4 only has many drawbacks. If you don't convert it to T3 especially creates a hardship. Do you convert well from seeing your test results? If you have autoimmune thyroid, one doctor feels that NDT might draw an attack due to the fact it is closer to your natural T4, etc. but I wonder how many would be affected really. You should be more concerned about fighting the autoimmune issue since that is at the bottom of all this.

stopthethyroidmadness.com/2...

Rkx212 profile image
Rkx212 in reply to Heloise

Thanks for the reply. I do have autoimmune hypo and I don't convert t4 well which is why I'm at the stage of wanting to self medicate (increased levo from 100mg to 125mg 3 months ago, my t4 is at the top of the range and t3 is still at the bottom, with high rt3... I've attached my full results on my previous post) I have some supplements to take to optimise some vitamin levels, so I'm working on that too. The theory of the body attacking your thyroid further if you introduced a ndt could be logical - its what it attacked in the first place.. I just wanted to make sure I wasn't wasting my time trying to introduce and balance a new synthetic med (t3) if I really should have been trying to swap to ndt. So much time has already been wasted with unhelpful docs and endo.

Heloise profile image
Heloise in reply to Rkx212

I would just start trying it out although if T4 is not working for you, it may be better to stop the synthetic entirely and many do better on NDT. You will be getting the T3 you sorely need. I was on Synthroid for six years before I could get a script for NDT (obstinate doctor) but now you can get what you want on your own. I went directly to Armour and ten years later I could not get my T3 into a good range so I added T3 and when I found a supplier I took T3 only for two years which worked out very well. I don't know if I produce any T4 on my own. Then I had to go back to NDT only again and I was able to raise the dose without a problem. I had a chance to acquire a small amount T3 again so I take NDT and T3. My body did not mind all these changes so it was all good.

Chances are that large reverse t3 number is saying your body doesn't like T4 or can't use T4 but I don't know if anyone can tell with certainty. Don't be afraid to try different combinations. I think your body will tell you what is good.

Marialoring profile image
Marialoring

Ive been wondering about this as well. I've been on Levothyroxine for a year now and am pleased that things are much better- hair not falling out, no aches and pains at all these days, and many other benefits. TSH general about 1. But I've found it impossible to lose weight, and I've really been trying. Other than that I've got no complaints but how can you know what you may be missing?

I'd like to ask the GP if it is ok for me to switch. Can you get it prescribed in the UK? I wouldn't mind paying privately if I had to...anything to lose some weight! I'm about a stone heavier than I was when diagnosed. And I've been on a diet all this time :-(

Rkx212 profile image
Rkx212 in reply to Marialoring

Thanks for the message, I've never been good on levo (9 yrs now) - significant hair loss, weight gain, lethargy, fluid retention - i could go on. My endo refuses to consider anything other than levo, won't even do a full thyroid panel blood test. So, I'm getting private blood tests and looking at self medication.

I've started to shift some weight now my levo has been increased, but still with a very restricted diet and daily exercise regime. Nothings easy 😕😔

thyroidnodules profile image
thyroidnodules in reply to Rkx212

I was scared to try ndt but took the plunge and listened to all the advice on this forum. it has been a year now and I feel normal and the weight has started to come off for the first time in 4 years. see my previous reply above

thyroidnodules profile image
thyroidnodules in reply to Marialoring

you sound like I was when I was on levo. see my reply above

dang profile image
dang

Some people do well with T3/T4 combo (like me), others do well on NDT, others do well on T3 alone. It's hard to say what will work best for you, since you could have a bad reaction to NDT but find that T3 works well.

I know there is a link to vitamin deficiencies and adrenal fatigue or stress that causes some people to do poorly on NDT or T4 alone, hopefully a more knowledgable member can step in with some info on that.

I think in the end you would have to try it to see what works for you. I think most Endos would try adding T3 first, then NDT if that didn't work.

So the pros/cons are personal, being that you'll probably do well on one and maybe not so well on another, and since each individual is different we can't really say which is right for you.

One thing that might help is if you post your latest results. For example if your FT4 is high and your FT3 is low, then maybe it would make sense to try adding T3 first and see how you do on it.

Rkx212 profile image
Rkx212 in reply to dang

Thank you for the reply.

I've included my latest results on my previous post - shows repressed tsh (as expected), t4 top end of range, t3 bottom of range, rt3 high. Some things to work on to optimise vitamin levels but my endo won't consider anything other than levo meds. My thoughts were to start introducing t3, just wanted to check before I went down that road it wasn't inferior to straight swap to ndt. I think I'll stick with the original plan of introducing t3.

dang profile image
dang in reply to Rkx212

Sorry I should have checked your previous posts before replying.

So I'm not knowledgable enough to answer your original question in terms of what is the right medication for you, I wish I had the answer. What I can do is give you my own experience which is similar, but please take it with a grain of salt, not as advice. This might be a bit long:

On Levo alone my GP was able to bring my TSH from 20 down to 0.8 with 100mcg dose. But I didn't feel great, I got hyper symptoms on top of hypo. They tested FT3 and FT4, FT4 was over range and FT3 was low.

They lowered my dose to 75, FT4 stayed at the exact top of the range, FT3 went lower, and TSH went up to 3.5.

After going through a few Endos who all had different ideas, I found one who prescribed both T3 and NDT to his patients (before you ask I'm in Germany). In his words (not mine) he prefers to start with T3 first and have NDT as a last resort, he said it's easier to dose correctly, and easier for the patient if it works. He added a bit of T3 to my dose (5mcg), I felt better, TSH stayed at 3.5 but FT4 went down. Then he upped my dose to 100mcg of T4 and 10mcg of T3 which I have to split during the day.

Latest results were FT3 now at top of the range, FT4 is much lower, under halfway, and TSH is a little suppressed at 0.2. I feel much better, not as cold, more energetic, I stopped losing weight (yes I was losing weight on T4 at a fast rate and T3 actually helped to balance that off, I think I'm a strange case in this regard). However I'm still not 100%, I still have low ferritin which I'm just supplement now finally, and my remaining symptoms do seem to be ferritin related.

So for me T3 added to Levo has helped a lot, but it's still too soon for me to say this is "the right" medication and dose, maybe eventually I will end up trying NDT.

I believe whatever you need, you won't feel good until your FT3 goes higher in the range, and that should lower your FT4 and help with the RT3 ratio, if you don't have bad reactions to Levo then it could be easier to try T3 first.

Rkx212 profile image
Rkx212 in reply to dang

Thank you, all these experiences and advice definitely help!

ElRR profile image
ElRR

Personally, I have tried both ways, and found ndt to be better. But, as people here have said, it's likely a personal matter.

SilverAvocado profile image
SilverAvocado

As Dang said, I don't think it's a matter of pros and cons, just that some people do better on one, and some on the other. It's not something that can be predicted from blood tests, just by trial and error. Both T4+T3 and NDT are giving you both forms of the hormone. But some people need T3-only.

The only real pro or con is that in order to get NDT you will have to self medicate, but you may be able to get T3 from the NHS. Unfortunately it's being seriously cut back, but occasionally people still get it.

Personally I would still try T4 +T3 first, even if you have to buy your own T3, as NHS doctors will still understand it better, say if you go in for an unrelated operation or something, and you will still be getting your Levothyroxine paid for.

thyroidnodules profile image
thyroidnodules

I can only say that after becoming hypothyroid after being quite ill with hyperthyroidism, that in spite of feeling better the weight just went on and on. I was eventually (too long) put on levo. I thought great my weight will come off but no I couldn't get the dosage right and the weight went on even faster. after listening to all the advice on this forum and 3 years later I decided to try NDT - I use thiroyd. I feel better and the weight stopped going on but I didn't lose. so bright idea to try a proper diet and cut out all the crap. I joined a slimming club to help my willpower. I was pretty sceptical as I had tried every diet under the sun and had read countless books on dieting, thyroid help and the science of good and bad food but nothing made a difference, probably because my metabolism had not been raised by the levo. however, I am now starting to lose weight at a normal level and I feel I have lots more energy. so in summary, levo did nothing for me but ndt has made me feel normal again. I was so depressed about my weight and my frustrating attempts to lose weight and to have more energy that I had almost given up. ndt has given me a new lease of life. I did not think to try t3 to my levo as I just didn't like levo. I did try t3 on its own but that didn't suit either. good luck

It's personal preference that matters most. At least you are now fully aware of the options available to you. My doc was so ignorant that I was not informed there was any alternative to levo monotherapy for 8 years. I had to do my own research, decided on NDT, felt much better and now I do not want to run the risk of feeling so rotten again by taking a T3/T4 trial even though it has now been offered to me by a consultant endo 2 years after starting NDT.

I gained a considerable amount of weight whilst on levo and 2+ years on Thyroid-S saw no reduction. I have now got a trial tub of Thiroyd and have lost well over a stone since Christmas even though I have had to take 3 tabs per day instead of 2 of the Thyroid-S (my hands were shaking).

As has been said many, many times on the forum, everybody is different and you have to trial each alternative until you find the right one to suit you. The docs are now being threatened to prescribe ONLY levo in the belief it is the "gold standard" but it is very much wicked for them to have to do this when the only basic reason for the current situation is the greed of the big pharmaceutical companies whose profits depend upon people failing to get well and therefore continuing to be prescribed medicines that they would not need if they were prescribed the correct medication in the first place.

Isabelle99 profile image
Isabelle99

It was suggested to me by my physician who was on desiccated thyroid that the sympathetic with adding T3 to it might be a better option as it was for him. He said he was getting such variation and how he felt on the desiccated. He said he thinks it was because the strength can vary due to the individual pig that the desiccated is taken from. He said it depends on the age of the pig. I know that may sound a little Bizzarre, but I've noticed a difference in my medicine when I get it refilled even if it's the same strength. So if I had my druthers, I would go back to synthetic and add T3 especially if I did well on the synthetic.

dang profile image
dang in reply to Isabelle99

My Endo said the same thing, that NDT is hard to correctly dose as the active ingredients can vary a lot for so many reasons.

SilverAvocado profile image
SilverAvocado in reply to dang

I believe this is one of those myths that go around doctors. The dessicated do not vary any more than synthetics.

dang profile image
dang in reply to SilverAvocado

I suspected as much 🙂. Having never tried NDT myself I wouldn't know

lucylocks profile image
lucylocks in reply to SilverAvocado

I think that it is maybe the ratio of T3 and T4 in NDT is not right for some people.

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