I’m reaching out to share my experience and see if anyone has insights into what I might be missing.
I’ve noticed that I don’t feel any negative symptoms when taking T3, even at very high doses. I’ve gone as high as 60 mcg at once and felt absolutely nothing. I’ve experimented with a variety of dosing strategies: very low doses following Dr. Kenneth Blanchard’s protocol (custom-compounded from specialized pharmacies), as well as T3-only regimens such as 20 mcg three times daily (every 4 hours). Despite all of this, my symptoms persist, although my blood test results always appear to be within the normal range.
The only time I ever felt significant improvement was when I lowered my T4 dose to 50 mcg for several months, and then suddenly increased it to 100 mcg. I felt an incredible improvement that day, but unfortunately, it only lasted for one day.
I’m feeling very frustrated and discouraged at this point. I’ve tried everything I can think of, and I’d really appreciate any advice or suggestions based on your experiences.
Thank you for reading,
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Nayeef
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T3-only regimens such as 20 mcg three times daily (every 4 hours).
That's a hard regime to follow. Do you manage to do that whilst still taking it on an empty stomach and at least two hours away from other medication/supplements for every dose?
People that are one T3 only are usually on it because they have problems absorbing at the cellular level. Which means that not only do they need a higher dose than 60 mcg but they need to take it all in one go, to flood the receptors and at least get some hormone into the cells. Splitting the dose into three would do nothing for them. Have you tried that approach?
Sounds like a lot of changes have been made. Are you sure you've given each dose long enough to be effective? It can take a long while to feel improvements.
FT3: 3.69 pmol/l (Range 2.63 - 5.69) 34.64%
FT4: 16.66 pmol/l (Range 9 - 19) 76.60%
How much of what were you taking when the above test was done? You are a very poor converter and you do need that T3. Results just being in-range is not good enough. It's where within the range that the results fall that counts, and your FT3 is much too low.
That's a hard regime to follow. Do you manage to do that whilst still taking it on an empty stomach and at least two hours away from other medication/supplements for every dose?
Yes, I used to take T3 on an empty stomach, away from any supplements, but there was no fixed time.
People that are one T3 only are usually on it because they have problems absorbing at the cellular level. Which means that not only do they need a higher dose than 60 mcg but they need to take it all in one go, to flood the receptors and at least get some hormone into the cells. Splitting the dose into three would do nothing for them. Have you tried that approach?
I’ve tried before and took 60 micrograms at once for a day, but when I told my doctor, who is a functional medicine specialist, he asked me to stop. I’m certain he knows nothing about how we respond to thyroid hormones because he hasn’t been trained in that and still holds onto outdated ideas.
Sounds like a lot of changes have been made. Are you sure you've given each dose long enough to be effective? It can take a long while to feel improvements.
This is the problem—I’m not patient, and I usually stop after a few days if I don’t feel any improvement, and then I try a different dose. I don’t know how much time it takes.
How much of what were you taking when the above test was done? You are a very poor converter and you do need that T3. Results just being in-range is not good enough. It's where within the range that the results fall that counts, and your FT3 is much too low.
Did you do any tests when on T3 only?
I was on a 125-mcg of T4 for three months when the tests were done, and I didn’t do any tests while taking T3 alone.
I am frustrated and do not know what dosage and approach I should try and how long I need. Are there any recommendations?
This is the problem—I’m not patient, and I usually stop after a few days if I don’t feel any improvement, and then I try a different dose. I don’t know how much time it takes.
It takes 6/8 weeks for a new T3 dose to settle in the system and to become effective.
Altering your dose after a few days won't achieve anything other than perhaps shewing your hormone levels
The general rule for increasing a dose is, " low and slow"
Suggest you stop taking T4 and work to slowly increase the single 60mcg T3 dose.....that will take time to settle so expect to experience some symptoms
You need T3 but you need to give it time to work at cellular level.....it's not like taking Paracetamol for a headache.
when I told my doctor, who is a functional medicine specialist, he asked me to stop
He probably clings onto this false idea that T3 has a very short half-life and 'runs out'. A lot of doctors believe that, and it's not true.
I’m not patient, and I usually stop after a few days if I don’t feel any improvement, and then I try a different dose
OK, well you're never going to get anywhere like that. It can take months to feel improvements sometimes. Patience is the key.
I was on a 125-mcg of T4 for three months when the tests were done,
OK, so what did you do next? Where are you right now?
If it were me, I'd be tempted to stop everything and start from the beginning again: 50 mcg levo, increase to 75 after six weeks, and continue like that, until you get your FT4 up to about 75% through the range. And then see where your FT3 is, and how you feel.
No-one can tell you in advance what dose you're finally going to need. You have to find it through trial and error. But that doesn't mean chopping and changing every few days. It means progressing slowly over a period of months.
Once you know how you feel on a decent dose of levo for a decent period, then you'll have a clearer idea if levo suits you or not. If your FT3 is still too low, then you add in T3 and slowly increase that. If you get to quite a high dose of T3 and still feel hypo, then it might be time phase out the levo and try T3 only, building up to something like 75 mcg T3 daily, taken in one go.
All this is going to take a lot of time but it's the only way to do it. And you've already wasted a lot of time by changing doses too frequently and without any coherent plan. It cannot be a random thing, it has to be consistent, going from one dose to another in a logical order rather than just hoping to hit on the right dose by accident. And doing it slowly and methodically will also teach you to listen to your body, and understand what it's telling you.
So, first of all, get your ducks in a row: have nutrients and cortisol been tested?
OK, so what did you do next? Where are you right now?
I am now on 100 of t4 and trying to follow a healthy diet and lifestyle to increase the conversion process but without any result
So, first of all, get your ducks in a row: have nutrients and cortisol been tested?
Yes, all nutrients are normal, but I have done many cortisol tests in the past using saliva and the Dutch test did not show anything clear, but I do not trust its reliability because I did a test on my last trip to Germany and the tests showed that I had a decrease in adrenaline and some neurotransmitters.
That's rather like flogging a dead horse. At some point you just have to accept that you aren't going to improve your conversion and start taking T3. People on here are always talking about improving their nutrient levels to improve conversion, but I've never seen anyone say that it actually worked!
However, there are plenty of other reasons that we need our nutrient levels optimal. 'Normal' is not the same as 'optimal'. 'Normal' just means somewhere within the range, but the ranges are huge. Can you post the actual numbers so we can have a look?
That test from Germany doesn't give any results for cortisol. And it's cortisol we're interested in when talking about thyroid. When did you last do a saliva test? And what were the results?
It's been a long time since my last test. I'll be doing a cortisol test in the coming days and sharing it with you. It's really a crucial point to check before any step.
I'm confused because having read Paul Robinson's books, he seems to be saying that the effects of an increased T3 dose for the most part become apparent very quickly, so that doses can generally be increased every 4-5 days (unlike T4 doses which should only be changed every 6-8 weeks). Do I take it that you think he's wrong on this point?
I see that he also cautions against taking T3 all in one go, favouring 2-3 doses a day for all but a small minority of people, so you and he clearly have opposing views on that particular point. I haven't really got a feel for how much consensus/disagreement there is on these sorts of issues in the thyroid community.
Picking up on another point that's been made in this discussion, my private "thyroid GP" has said that I should take my first T3 dose at least an hour away from food and drink, but that this doesn't matter for doses later in the day. Do I take it that you disagree?
It's not that I disagree with Paul Robinson, it's that we're not talking about the same thing. His method works for a lot of people but it would not work for someone with resistance to thyroid hormones, which you possibly have, judging by your story so far - although, to be honest, having skipped about so often with your doses it's difficult to know what you have.
No, we don't have opposing views. It's just that the treatment has to fit the disease. Different people need different methods, that's all. I'm certainly not saying that he is wrong. But you have to try one method or the other. You can't do both at the same time.
my private "thyroid GP" has said that I should take my first T3 dose at least an hour away from food and drink, but that this doesn't matter for doses later in the day. Do I take it that you disagree?
Why would you take it that I disagree? lol I don't make a habit of going round disagreeing with people.
But, for the life of me I cannot see the logic behind that statement. I would love to know how he worked that out.
There are lots of discussions on here about whether or not you can take T3 with food, but no conclusions are ever arrived at. There just hasn't been enough research to say one way or the other. But, as someone who has spent many years reading other people's blood test results I would say it depends on the person. Some people seem to be able to get away with taking T3 with food, others show a marked reduction in absorption when they do that. Hypothyroidism is a very personal thing. Myself, I prefer to err on the side of caution and not take the risk. I take my T3 well away from everything just to be sure. It doesn't make much difference to my life doing that, given that I only take it once a day.
But whether it needs 4-5 days or, alternatively, 6-8 weeks to "bed in" a dose of T3 surely doesn't depend on whether someone has thyroid resistance or not? This issue doesn't just come down to alternative "methods" I think - it's far more fundamental than that.
What issue? We're not talking about alternative methods exactly, we're talking about different diseases - or different forms of the same disease, depending on how you look at it.
I have no idea what you mean by being more 'fundamental'.
The fundamental issue is how long to wait to see if an increased dose is the optimal one or whether it needs to be increased/decreased. This will directly depend on how long the change in dose needs to take effect. 4-5 days is radically different to 6-8 weeks.
If what you're saying is that most people can follow Paul Robinson's advice of 4-5 days while others, the thyroid hormone resistant, should instead wait 6-8 weeks, can you please explain to poor confused me why this is the case?
Well, actually, that wasn't what I was saying. I wasn't talking about how long T3 takes to take effect, That has to be a very individual thing. I was talking about whether to take it all in one go or split the dose. That was the subject of conversation with the OP. No wonder I had no idea what you were talking about! 🤣
my two penneth on the 4/5 days or 6 wks thing for T3 adjustments.
"4/5 days" only takes into account how long it takes for the half life issue to allow 'x' dose to reach a stable level in the blood, and while this is long enough for any initial symptom response to appear ... it totally ignores 'what happens next' in the body ... if you change one level it affects all the others , the deiodinase ( which convert T4>>T3 . or T4 >> rT3, or T3 >>T2 etc ).. they will change in response to different levels of T4 and T3 and TSH .. and then the various cells will function differently in response .... and so on .
on this basis , increasing T3 every 4/5 days seems a bit rash to me . it ignores how long the body takes to get it's act together after a change.. we know this can take at least weeks .. and very often months .
That's really helpful, thanks. What mystifies me is why after an increase in my T3 dose, I feel remarkably well for a few days and then I'm back to square one and feel absolutely dreadful again. I just don't understand what's going on there. That kind of suggests to me that the dose isn't high enough yet, so then I think what's the point of waiting until increasing further. On the other hand, I completely get your point that the long term effects will take time to manifest themselves and so one needs to allow a decent interval for things to settle down.
if nothing else ,i think waiting longer after an initial period of 'better, then worse again' helps us with a process of elimination re. what to do next.
if we wait 6 wks+, then we know with a reasonable degree of certainty if it's getting steadily worse , and is therefore an issue that does need adjusting , or if it is beginning to gradually improve after an initial wobble ,and is therefore worth continuing on same dose for longer to see if small improvements continue to build.
Going straight up / or down and then still feeling naff , without knowing for sure what the first dose would feel like longer term, seems to me be a very good way to get lost in the woods .
I wouldn't recommend anybody change doses after just 4 or 5 days. I would say two weeks minimum. But only in the early days. The longer you're taking it, the higher the dose gets, the longer the gaps should be between increases. It's so easy to miss you sweet-spot. And from time to time it's good to hold for six weeks and retest.
But, no, I'm not exactly rigid about it. Part of the treatment process is getting to know your own body, and how it reacts. Once you know how to listen to your body and give it what it wants, it all gets easier.
Exactly and I would be interested to hear the different recommendations to know how I can start. We are different but we can learn from each other. I will start now by reducing the dose to 50 of T4 and following your recommendations of gradually increasing. I hope that I can find a way to control the correct ratio of T4 and benefit from it because living on only T3 is exhausting because it is not available as much as T4, but if it is the last resort, then it is necessary
You may have a form of thyroid hormone resistance that makes it difficult to get adequate T3 to reach the nuclei of the cells where it can attach to the various T3 receptors and then become active.
T3 remains inactive until this happens so you can have a high serum count which makes no difference unless it reaches the nuclei of the cells
For good health every cell in the body must be flooded with T3 by way of a constant and adequatr daily supply.
After decades of poor health and after a great deal of reading and help from this forum I eventually discovered in my early 70s that I have this problem and to overcome the resistance I need a supraphysiological dose of T3.
Initially I needed 212.5mcg before I experienced symptoms of overmedication, as some of the receptors have "wakened up" I could reduce my dose. I now need only 100mcg.
We need to take the full dose at once, that provides a force against the cell walls which helps to push some of the dose into the cells
The greater the resistance the bigger dose we need.
I take my T3 in a single dose at bedtime which keeps it away from food and drinks allowing better absorption
Your T4 to T3 conversion is poor ( as mine proved to be) so that has lowered your T3 level for a start.
It looks as if 60mcg isn't enough and the T3 you are taking isn't contributing a great deal.
At that point I decided the T4 had to go and T3-only was the way forward. I just slowly titrated the dose up until it became effective.
It's important to remember that we aim for the lowest effective dose not the highest dose we can tolerate
On T3-only symptoms become the method of monitoring the dose.
Listen to your body, it will tell you if something is wrong
I understand how you feel but there is usually an answer. Medics won't like it....but that is ignorance! My GPs now accept that I self medicate with T3-only and have improved.....and didn't kill myself as one GP suggested would happen!!
I recommend an easy to read and well referenced ebook available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton. I think you will find it helpful.
Interesting! I’ll try this approach carefully. There must be an issue with me. I’ll also try to see if there are any problems related to cortisol. Thank you so much for the book; I’ll make sure to read it.
T3 is usually very easily absorbed, 95% within a few hours. I take it with food and have no problem. For the above results how long after the last T3 dose was the blood taken? What does was it? It looks like it was a long time because TSH is low (or you were previously on a higher dose).
What were your blood test results when you were first diagnosed? It's difficult to judge when you are on T3 from different sources, particularly compounded medication as you can never be sure of the quality. Is you T3 on prescription? Sorry for all the questions, but we need to figure out what is going on.
Getting T3 and T4 in my country does not require a prescription and can be purchased directly from the pharmacy, but T3 is not always available. Currently, I have T3 at a dose of 5 mcg and at a dose of 25 , and I am trying to combine T4 with T3 at different doses, but the problem is that I do not give it enough time, so I did not do tests because I was relying on monitoring the symptoms.
I've seen you added your country in your profile (than you!). How much does it cost to buy T3 over the counter there? You say it isn't always available, does your pharmacy order it in for you if you go in and ask for it and they don't have it?
I'm not sure it's somewhere I plan on going, but always useful to know the details of countries that sell it over the counter.
in my experience , i need to be taking a stable dose of T4 for at least 5 wks before i can tell how that dose will feel .. the first 4/5 weeks i feel all over the place ,with symptoms changing a bit every week , and not always for the better.
as for T3 ,, i'm still practicing , but i'd say give any new dose at least a couple of weeks before deciding how it is feeling .
ideally you are looking to make the smallest dose adjustments possible , and allowing the longest possible time to see the effect.
large changes made in quick succession are pretty much guaranteed to mess up the body to such an extent that you don't know what is what ... it prefers stability / consistency , and hates thyroid hormone levels being messed with .
try to think of changing your thyroid hormone levels more like changing the direction of a supertanker on the sea.... a small turn of the wheel is enough , but it takes the tanker 3 miles to really show the change of direction ... turning the wheel more sharply doesn't make the tanker change direction any quicker ... it still take 3 miles. .. but it will lead to over correction / zig zagging . if you see what i mean.
I agree with you, I just became obsessed with the sweet spot that I reached when I raised the T4 dose from 50 to 100, which led to a huge improvement, and I think that is due to the increase in the deiodinase hormone, which led to a rapid conversion of t4 to t3, so I really think I have a big conversion problem and I have to be patient.
agreed .... these short lived sweet spots probably have a lot to do with deiodinase changes in response to changing T4/T3 levels. and we only know the true effect once these ripples have stopped.
'slowly slowly catchee monkee' / 'the tale of the Hare and the Tortoise' very much applies here .
Could you possibly please explain this point about deiodinase changes in response to changes in medication dose? I haven't heard anything about this before.
i could try ,, but it would be hard and some of it would be wrong cos i struggle to remember which one does what/ where/ when . So i will find you something to read from thyroid patients canada ... hang on .
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