Hi
I started NDT five months ago after previously been on levo. I am currently on 3 grains prescribed by naturopath.
I am finding very little improvement on NDT even though my FTs are on top of the range and TSH supressed. I have been diagnosed with hashi's. I wonder if I am not tolerating T4 in the NDT as well.
Do you think I would be better on T3 ?
Before I went back onto NDT I checked everything else out first, was I converting well, were my essential vits etc optimal so tested Vit D, B12, folate and Ferritin. Some were low so had to supplement. So basically I took on board all the suggestions I had read to make it work and I crossed over with no issues. But I had started my thyroid journey many years ago now so at least I knew it worked for me previously. But if you haven’t done the things I’ve mentioned that may well be a good place to start. To know if you have a conversion issue though you would need to go back on Levo as you need to compare FT4 and FT3 readings taken on the same blood draw. When taking any form of T3 then T3 is the only accurate reading so you won’t be able to check that on NDT. Also when I was first given NDT then I was never tested but when I felt symptoms returning then my GP just raised my dose from one grain to two but I can’t envisage the present regime would be happy doing that! But I was told back then that your body just takes the amount of T3 it needs from the NDT but I believe that is on NDT only and not adding in some T4 as some do or extra T3.
Thank you for your reply, silverfox7 . My nutrients are all optimal, me and my doctor don’t see any problems there. I was very ill on Levo alone an got a little better on NDT. My doc goes mostly by how I feel and I feel very hypo. Cold, low body temperature and a lot of other symptoms from head to toe. I do not feel overmedicated with my FTs on top of the range.
I tried to increase NDT dose by 1/5 grain and felt even colder.
I suspect that I can’t tolerate T4 in any form and it stands somehow on the way of T3 getting into the cells. Is it possible? I understand that greygoose was a good converter, still couldn’t tolerate NDT. My question is to those who switched to T3 only from NDT, what was the first clue?
I have not tried T3 only so others will have to comment on that. I believe you are referring to T4 being converted to reverse T3 instead of free T3; previously, rt3 (being inactive) was thought to block the action of free T3. However, that myth has recently been debunked, and it now seems rT3 and fT3 don't compete for the same cell receptors. greygoose has commented on this in several posts.
A possibility, maybe that is what the OP is thinking. 
And, if olga67 would post her results, with ranges, we'd have a better idea.
I suspect that I can’t tolerate T4 in any form and it stands somehow on the way of T3 getting into the cells. Is it possible?
No, that's not the way it works.
I understand that greygoose was a good converter, still couldn’t tolerate NDT.
That is true. And, I have no idea why. Maybe because I have Hashi's? As you know the hormone in NDT is bound to proteins, and it's said that that could trigger immune system attacks. But, somehow, I doubt that that was my problem. There was just too much T4, I think. I don't know.
My question is to those who switched to T3 only from NDT, what was the first clue?
I got up to six grains and still felt hypo. Previously I'd been on T4 only, and T4+T3, though, and never felt really well, so pretty certain it was the T4 not agreeing with me. It was just worse on NDT for some reason. So, the logical progression was to try T3 only, and that worked.
May I ask what you felt when you say you felt worse?
I put on a ton in weight and ended up bed-bound, no energy, crying most of the time, no strength in my muscles... Just all the hypos symptoms got worse.
Lovely
been there worn the t shirt 2011 but a tab better now bit to go
....how are you now please say 0 to 10 and from back then? Do you have bad days now Gg! What denotes a bad day
Oh, compared to then, 10, without a doubt. But, I do still have bad days - doesn't everyone? A bad day is fatigue, lack of inspiration, apathy. And, of course, I do have other problems that I don't put down to thyroid, like constipation. Yes, I know that's a thyroid symptom, but I never had it until a bunch of bungling butchers - otherwise known as 'doctors' - put me on PPIs when I was too ill to protest - didn't even know what I was taking, actually. Since, then, digestion, etc. shot to pieces, and I can't get it back on track.
....have you tried a good probiotic, kefir or Live Greek yoghurt etc. May be just the gut Gg as many have this as we age
I lost the weight when I was blob on with gut health. So experienced it both ways, nothing to loose aye, gf isn't the monster it sounds. Mum had the best gf cake yesterday my daughter made it with gf flour
....maybe worth a trial anyway as gluten does take quite a bit of digesting and if the gut is leaking a bit it will affect your other bits for sure 😬
Gluten in France is not at all the same as gluten in the UK. It's a different strain of wheat. And, I did try GF. Did nothing for me.
Oh pity, the live yoghurt is quite easy to make and really inexpensive as from just one small culture
Yes I found that I'm ok with Durham wheat! The keniesiologist brought that one up, which certainly helps. Different wheats for sure !
Just curious. Do you know where you got the info. that body just takes the amount of T3 that it needs from NDT? Thanks
Gosh that’s such a long time ago now! My doctor was diagnosed at the same time and researched it and I know he asked my now late husband a lot-husband was a science based Endo doing research on the thyroid so may be doctor or husband but it’s getting onto 40 years ago. I think diogenes said something similar fairly recently as well. Now the hospital have said there is no point of me seeing them as I know what I’m doing (!) I’ve changed my NDT amount. I was on a 3 day cycle with medication but I thought it makes more sense to take the same amount each day so I’ve upped one lower dose and I haven’t had any palpitations or anything else that would indicate I wasn’t on enough medication or taking too much. Of course I was still being sent for bloods which were never tested when I first took NDT but the readings are fine 5.I in a range that I think starts low and finishes at around 5.7.
I see from your profile that you have pernicious anaemia. How often are you having injections?
Once you’re on B12 jabs you just can’t tell whether you’re having them regularly enough because your levels will always look good.
If you’re having B12 jabs daily, then it could be the type of B12 you’re injecting—some people do better on one type or another.
If you’ve tried all that—and you probably have—then maybe this comes down to patience, which is sooo hard. When you’ve been very unwell it can take a while to start feeling better. Big hug
Do you have some blood test results to share? I know you and your doctor think they look optimal but what we can’t see is whether everything’s been tested and what “optimal” might look like.
Finally, how are you taking your NDT? Split doses or all at once? And have you tried taking a different NDT? Alas, one size doesn’t fit all with NDT brands.
Big hug back Jazzw
2 grains
TSH <0.01(0.3-4.2)
FT4 15.4(12-22)
FT3 5.5(3.1-6.8)
3 grains
TSH <0.01(0.3-4.2)
FT4 18.1(12-22)
FT3 6.2(3.1-6.8)
Ferritin 122 (15-150) stopped supplementing
Folate >45 (10-42) stopped supplementing
Vit D 87 (25-150)
Bloods done 24 hours after last dose. I take all NDT at once in the morning, suits me best. I
I self-inject B12 hydroxy twice a week now after being on daily injections for about 9 month. I’ve tried methyl as well and felt no difference. I feel that my symptoms are mostly thyroid related as they change with the hormone type and dosage.
I strongly feel that T4 is not agreeing with me, as greygoose said.
My doc can prescribe T3 and it wouldn’t cost me anything as it is covered by my insurance.
I am not sure whether to do it gradually or just swap right away.
Bloods done 24 hours after last dose.
OK, so you have a false 'low' FT3 there. It's actually higher than that - and that's top of the range. So, I would conclude that you're taking too much NDT. Try reducing by 1/4 grain, see if you feel any better. Too much can be as bad as too little.
Done that, felt worse, breathless, more aches. Went back on 3, breathing better, but feeling colder and more tired :(.
I’ve hit the wall, that’s why considering T3 only
Maybe you could start taking folate again.
Your level wasn't that-that high, and if that was the level when you were supplementing, it may be lower now, and is needed for iron and other things to work. I don't think it would hurt. But I know that's not what you're asking..
OK, thanks for sharing those. There certainly isn’t anything obvious, is there?
I suppose then, the choices come down to this:
(1) Hang on for another month before changing anything (just to see if it’s merely a question of time to heal a bit more)
(2) Try a different brand of NDT (which one are you taking?)
(3) Or switch to T3 only.
But it does seem to me that 5m isn’t that long. I know it is when you feel rubbish, but not when you consider you’re getting over years of your body being damaged by deficiencies. I’d be minded to wait just a bit longer before changing anything at all, just to see whether some stability helps. Swapping and changing will just confuse things further and heaven forbid, could just make things worse.
What are your symptoms at the moment? For example, if you could wave a magic wand and change one thing about how you feel, what would it be?
Thank you very much for your reply. I am taking Thyreoideum NDT. It is the only prescription NDT in Holland and I can’t get non-prescription ones through the customs.
My symptoms are: feeling cold, aches and pains, stiffness, dizziness, fogginess, poor appetite, insomnia, poor mobility, tremors, constipation, exhaustion and I can go on.
If I could regain my mobility and better sleep I would be a much happier person.
What is puzzling me is why my morning temperature is 35.1C with this bloods? I had a higher one before meds.
I recongnise the greygoose description My joints are popping and cracking and nothing bends as it should
I sought about waiting longer on this meds, but I just can’t shake the feeling that T4 is making me ill. I am inclining towards T3 only and looking for reassurance, I guess.
Then do it—see if you can get switched across to T3 only. It’s hard to know exactly what’s causing your symptoms but I guess you’ve reached the stage where you need to rule things out.
It doesn’t sound like it’s going to make things worse. But keep in mind that most doctors have no idea how to prescribe T3 so do ask lots of questions here about how best to take it and don’t let the doctor keep you on too low a dose for too long.
Switching from NDT to T4 + T3
Add T3 to NDT...?
Going from NDT to T3 - advice please
Transitioning from T3 to NDT query
NDT and T3
