Hi everyone, has anyone managed to lower their dose in a T3 containing medication (NDT/metavive/T4&T3combo) ? Your TSH is suppressed so I’m wondering if it’s ever possible?
A friend who tolerates T4 well has said she adjusts hers up and down according to her labs as it gets better or worse (with her dr). And I know people’s who have improved with various strategies but they again are on T4 meds. Aside from whether you believe you can improve or not, is it possible theoretically to ever lower your dose on a T3 containing med? Will your body start making more of the signal to do so is repressed?
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Sunseasky
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Not really sure what you're asking here. Why would you want to reduce your dose, anyway? Unless, of course you're over-medicated.
Your friend that adjusts her dose up or down, according to her labs, sounds as if her doctor is dosing by the TSH - or else she has Hashi's - because it's not usually necessary to keep adjusting the dose unless dosing by the TSH. And, that is the wrong way to do it.
Will your body start making more of the signal to do so is repressed?
With or without the signal, it's doubtful if your thyroid would be capable of making T3 is you're hypo. That's what being hypo is all about: a thyroid that is incapable - for whatever reason - of making enough thyroid hormone to keep you well. Why would that change?
It’s not about changing but about if your thyroid improves. I’m using a neural retraining programme which gets to the root of what caused the Hashimotos in the first place - nervous system on overdrive stuck in sympathetic mode. Many people on it have reversed their Hashimotos or significantly improved it and lowered their meds. (As well as other AI conditions and other chronic conditions ). For some the damage isn’t permanent. Given most people are just on T4 this is possible to lower the dose since they start producing too much because the TSH is still effective and their levels thus become too high so they lower their meds. I’m wondering if this is possible on T3 containing meds at all.
Highly unlikely that your thyroid will improve if you have Hashi's.
So, have you found the cause of your Hashi's? I would be deeply distrustful of a 'retraining programme' because it's not about training in the first place.
I have heard so many people, during my years on forums, saying that they have reversed/cured/improved their Hashi's. And that they've been able to stop their thyroid hormone replacement. It never last long. Sooner or later they are back, asking for advice, being obliged to restart their THR.
Do you know how Hashi's works? You have these swings between hypo and false hyper, and back again. And, often, between the 'hyper' phase and back to hypo, you can have a period of euthyroidism, that can last for several years. And, that's when people start believing that they've 'cured' their Hashi's. But it never lasts.
And the damage done to the thyroid is permanent. The thyroid cannot fully regenerate.
Given most people are just on T4 this is possible to lower the dose since they start producing too much because the TSH is still effective and their levels thus become too high so they lower their meds.
I'm sorry, that just doesn't make any sense. I can't see how that would be possible.
I very much appreciate your reply but to each their own, not here to convince anyone of anything just wanted to see if anyone had adjusted their meds in that direction with a suppressed TSH or knew if it were possible.
I do know the root cause of my hashis yes - it came from an extreme period of stress as did other health conditions. I am slowly reversing those through retraining my neural pathways and relaxing my nervous system which has learnt to be in a permanent state of fight if flight. I have already reversed one AI condition and had significant other improvements and reversed other ‘chronic’ health conditions. I know hashis is just a matter of time as I see my antibodies reduce. Whether there is permanent damage remains to be seen but I’d be happy to have it under control on a maintenance dose and a calm immune system.
I appreciate we all are on different paths as we navigate our health and so not looking for any argument or to convince anyone on here on this since I know it’s not for everyone. I was just asking here purely to find out more about a suppressed TSH and what that meant regarding change in the thyroid.
Well, as tattybogle said, you're asking the unanswerble. I doubt if anyone could help you there.
I know hashis is just a matter of time as I see my antibodies reduce.
I'm afraid that antibodies reducing is meaningless. Not trying to convince you of anything, just telling you a well-known fact. It's not the antibodies that are the problem, they are not responsible for the attacks on your thyroid, they are the result. And, they fluctuate all the time, but this has no bearing on your disease: Hashi's. Even if your antibodies disappeared completely, you would still have Hashi's, I'm afraid.
I do understand what you're asking , but there are some issue with the question, that make it hard to answer. It's too vague to say :-
" Many people on it have reversed their Hashimotos or significantly improved it and lowered their meds. .... Given most people are just on T4 this is possible to lower the dose since they start producing too much because the TSH is still effective and their levels thus become too high so they lower their meds...."
You'd need some actual examples of how their numbers changed during the process of this therapy , and their history , before you could draw any conclusions about how it had worked.
....and if we don't know how it worked on people taking T4 and what their TSH levels were then we can't begin to answer what effect it might have on someone with a supressed TSH.
Some people on 'T4 only' will also also have a pretty supressed TSH . My TSH on Levo was about 0.05 for many yrs . lower than some taking T3. So i think your real question is not " will this work if you take T3 ?" , but rather " will this work if your TSH is below X"
And i still couldn't answer unless you told me exactly what the therapy was doing to peoples thyroid results.
I think you may be asking a very unscientific question, but wanting a very scientific answer , if you see what i mean.
Thank you that’s really helpful. I didn’t realise the TSH could be suppressed on T4 as well. Maybe that’s why I did so badly on T4 since my GP at the time only diagnosed by TSH. And yes so my question is really about a suppressed TSH in general and if that means meds can only move in one general direction as a result.
Meds can move in any direction you choose to take them. if you reduce them then TSH will usually rise. This will then 'ask' your thyroid to make more T4/T3..... the point is though , can it actually manage to make enough consistently to let you function ? presumably not , or you wouldn't be on thyroid hormone replacement in the first place.
Do you have any blood results from when you were taking T4 only ?
Totally understand....I wasn't asking for result's in order to advise on changing meds..... , just trying to understand where you're thinking is coming from re. TSH.
Assuming you are currently taking something with T3 in , and that currently your TSH is pretty low as a result.........I think the question you are really asking is "do i have to reduce T4/stop T3 enough to get my TSH to somewhere near the 'normal' 1 ish in order for any improvement i might make to my thyroid function from his neural retraining programme to be seen "
And if that's the question , then i think the people to ask would be the people promoting the therapy , as hopefully they understand enough about how their therapy improves thyroid function in relation to patient's taking T4 only (whatever the TSH level) ,to advise on removing /stopping T3 .... and you have to ask yourself ... if they can't answer that question ... how can anybody else ?
But still ,i'm sure it can't hurt to try and calm you immune system down ,and i'm sure fight /flight /freeze is an issue we'd all do well to take more interest in , so i genuinely wish you all the best in your efforts.
Just to add ..... from reading your reply above about reversing Autoimmune conditions..."I know Hashi's is just matter of time as i see my antibodies reduce"
Unfortunately you can't equate reducing TPOab numbers with improvement or reversal of Autoimmune thyroid disease..
For example , mine were 2499 and then >3000 at diagnosis.
13 yrs later they are 195, (no idea what they are now)
I could have assumed i'd reduced them if i'd been 'trying' to , but i wasn't.
They often do reduce over time regardless of 'doing anything ' to improve them.
This could be simply that there is now less healthy thyroid tissue for the immune system to attack , and so therefore less antibodies show up as a result of the attack.
(it's not the actual antibodies themselves that do the attacking, they are more like a sign that an attack has happened ..... think of them as 'clean this mess up ' labels)
But they will also go up and down , and unless you were to test them frequently , you don't really know what they're up to in between.
Any thyroid tissue that has already been attacked won't improve , or at least i've never seen any studies showing physical evidence of that happening in autoimmune thyroid disease.
I take T3 only and usually need less in Summer, so you could say I lower the dose in Summer (or raise it in Winter) Doesn't seem to affect TSH, but I have central hypo so TSH doesn't react properly anyway. My TSH is usually just under range, but not suppressed - sometimes for no obvious reason my FT4 rises and then my TSH usually goes up too.
How much of that replacement hormone are you taking?
How do you feel?
Do you feel overdosed?
Are you factoring your symptoms into yourdosing regime?
Are you remembering that what works for one person, need not work for another.
TSH is a pituitary hormone, it responds to the level of hormone in the blood but does not give an adequate picture of the amount of each hormone.
Dosing by TSH is wrong on several counts, one being that TSH naturally fluctuates
The measurements of the Free/available circulating hormones FT4 and FT3 are the important ones for dosing.
Only with them both can we establish how well we convert T4 to T3
T4 is the storage hormone, it is converted in various tissues in the body to T3.
A healthy thyroid produces about 80% T4 and about 20% T3.
T3, the active thyroid hormone, is the most important, it enters the cells and it's main function is to regulate the body's metabolism. Many of the body's functions slow down when the thyroid does not produce enough of these hormones.
For good health the body needs a constant and adequate daily supply of T3.
"Aside from whether you believe you can improve or not, is it possible theoretically to ever lower your dose on a T3 containing med"
I don't understand the point of your question!
Of course it is physically possible to lower your dose of T3, as it is possible to stop taking/reduce any medication.....but, you will be courting trouble and become ill again if you need that dose
"Will your body start making more of the signal to do so is repressed?"
I think you mean, will the TSH rise if you lower the dose.
Low hormone levels cause raised TSH
High hormone level lowers (or eventually suppresses) TSH
It's not clear, but I'm assuming you are wondering if your thyroid will start to produce more T3 if you stop taking the replacement hormone. Being hypothyroid means that your body does not produce enough thyroid hormone, so to improve our health we need to replace this from outside the body ( with pills). If we stop taking replacement hormone/ pills that will not, as a consequence, cause the body to produce more hormone (as you seem to be asking)....so we are back to square one and again suffering symptoms of low hormone.
You would not reduce an optimal dose, only one that is causing overmedication.
T3 is more potent than T4, it's also used when T4 is not effective. Consequently people tend to be on higher doses when taking T3 and this lowers TSH. An added complication is that with central hypothyrodism T4 doesn't tend to work as TSH is needed to promote T4 to T3 conversion. In light of this TSH is just as likely to recover when reducing T3 dose BUT usually because T3 doses are high and TSH is kept very low for some time the pituitary thyroid axis gets down-regulated and TSH is unable to recover.
This has happened to me. I needed high dose L-T3 for over a decade. I've just tried coming off hormone for a few weeks followed by just 50 mcg L-T4 but I'm unable to get my TSH back to normal levels. An added complication in these cases is that the TSH has reduced bioactivity. The moral is try to avoid getting a very low TSH if you can as it leads to other problems in the longer term.
The 'neural retraining' concept is a load of tosh. In autoimmune hypothyroidism the thyroid is destroyed and altering autoimmunity isn't going to make it grow again. There can be fluctuations in hormone levels during autoimmunity and hypothyroidism can have other causes. A good general pointer is to stay on the lowest dose that makes you well.
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