You can count on the moderators of this forum to always provide accurate information, and correct inaccurate information in various posts. That is important to avoid spreading a lot of rumours and misinformation.
I make this observation after visiting a French thyroid forum. Many members go to Belgium for treatment as they cannot get NDT in France, and few doctors prescribe T3.
The moderator of this forum (who is also the chairperson of the French Thyroid Association) is clearly anti-T3. Of course you are entitled to your personal opinion, but you need to be open-minded and respect that others disagree with you. So saying things like "these doctors´ behaviour is borderline criminal" is not only offensive but also completely wrong. This moderator has stated things like: "A doctor who prescribes T3 to everyone is dangerous". I believe it´s more likely that their patients come to see them because they need T3; after all, if you do fine on levo, there is no reason to pay hundreds of euros to see a hormone specialist and even travel abroad to do so.
This moderator also goes on and on about how those doctors are ripping their patients off, saying things like: "I hope they enjoy their holidays in exotic places". Of course, their fees are higher than those of most other GPs. But they are in private practice so have to pay the rent, their own salary, holidays, and sometimes secretaries and receptionists. If all doctors worked like that, they would not be able to charge as much, but I can understand their reasons for doing it.
What´s even worse is that this moderator goes on to say that synthetic combo drug Novothyral was taken off the Belgian market because (and I quote): "it contained too much T3". That is just ridiculous. I did an online search and found a statement by the manufacturer, Merck. Novothyral was withdrawn in Belgium in 2010 as it was not deemed profitable given that few patients were on it. However, patients who were on it until 2010 can continue to order it from Germany with a Belgian prescription.
Of course, this erroneous statement raises some interesting questions. Too much T3 for whom, exactly??? And, if indeed that statement was true, why have the authorities in countries such as Germany, Switzerland and France, where Novothyral is also available (called Euthyral in France), not reacted and withdrawn it from the market? And why would Novothyral be considered to contain too much T3 and not NDT (still available in Belgium)?
I am horrified by statements such as these. You have a moderator telling members that T3 is dangerous and that doctors who prescribe it risk their patients´ life. Stating that a drug containing T3 was withdrawn because it was deemed unsafe is misleading, and the actual reason easy to find online. I am especially surprised that a person representing a thyroid association can be this biased and uninformed.
This makes me even more grateful for forums such as this one where you can actually trust the moderators to know what they are talking about!
It is very good to read that. I hope we can try to live up to it!
I always say that it is best if everyone tries to check everything. With the best will in the world, we make mistakes, mis-understand things we have read, mis-word things, make typos, etc.
I'd hate to think members didn't try to check what is posted here.
don't worry .. i never trust a word you say without checking it for myself .... Mind you, i do wish you'd be more selective about what you say ...... i've just had to spend all morning double checking your calculations of 'how many Levo tablets can you fit into a Petrol Tanker ?' .
But it's Ok . you were correct
.. and anyway i needed something to pass the time sitting in the queue for toilet rolls...
In my experience, most French thyroid forums are pretty awful! But, I haven't been on one for years, not since I found this forum. No-one was interested in anything I had to say, anyway, they were far more interested in the mis-information being bandied around. Had a furious set-to with one bloke who insisted rT4 existed and there was proof 'all over the internet'! When I asked him to provide sources, he would just 'scream' at me to 'do your own research'!
(As an aside, I did do my own research and only found two mentions of rT4 after days of reading research papers and blogs. I contacted both writers of said blogs. One was mortified that she had make such a 'typo' - really? The other never replied, even though I wrote to him several times.)
Some of the stuff I've read on French forums would make your hair stand on end. But, I can't say I've ever come across a moderator that was anti-T3. That's just appalling! I took Euthyral for a couple of years. And for me, there was too much T4! lol One tablet contains 100 mcg T4 and 20 mcg T3, and I took two a day. I think, possibly that the reason not many Belgians take Euthyral is that Belgian doctors prefer to prescribe NDT - the clued-up ones, anyway. And the reason French doctors don't prescribe NDT is because it's illegal! None of it makes much sense.
I totally agree! The strange thing is that this forum and the moderator were very upset when Merck reformulated Lévothyrox to include mannitol. Patients started complaining about a return of symptoms and this forum among others wrote so many protest lists that the Ministry of health ordered Merck to bring back the old version. I remember reading about this whole mess shortly before I learned that Euthyrox that I had been on for years would be reformulated in the same way. So, they admitted that reformulating a drug can affect patients´wellbeing. But they won´t admit some people need T3. I don´t know if they receive public funding so have to say what the medical community wants them to say...?
Hmmm That's a possibility, I suppose. Who can tell. Although, if they'd been personally affected by the reformulation, that would colour their options - especially the moderator in question. She seems to have a lot to say for herself.
I think that the French forum you are talking about is ours, Vivre sans Thyroïde, which I created 21 years ago (and which has become a non-profit association some years later)?
Apparently you misunderstood several facts?
1. Our forum is absolutely not "systematically anti-T3" - I've been taking a combination treatment (levothyroxine + tiratricol, medication "Téatrois", a metabolite of T3, which has been taken off the market in 2020) for more than 12 years - and we regularly talk to patients who seem to have conversion problems about the possibility that they might lack T3, and might consider to add a little T3 to their T4.
BUT we are also aware of the risks of T3, much more powerful and much faster than T4, so we strongly advise to discuss with the doctor, and to introduce and increase it VERY progressively.
We have explanations about "combination treatment: for whom, when, how?" and several other articles in our Frequently Asked Questions list: forum-thyroide.net/phpBB/ft...
2. Yes, we think that not EVERY patient needs additional T3 - many patients, after a period of adaptation, manage to correctly convert the T4 provided by levothyroxine into T3, the active hormone (by the way, in people with a healthy thyroid, their gland produces only 20% of the T3 they need, and 80% already come from conversion). That's why we say that doctors who systematically prescribe T3 to everyone (often in very high doses from the beginning) are "dangerous" - every patient is different!
3. Yes, we are scandalized by the prices taken by some "anti-ageing specialists" or "specialists in functional médicine" - we know patients who took credits, spent thousands of Euros to pay for consultations, tests and prescriptions, without feeling better (and even worse). We have several discussions between patients who had a bad experience, e.g. this one: forum-thyroide.net/phpBB/ft...
4. NO, we NEVER pretended that Novothyral (T4/T3 combination drug from Merck) was taken off the Belgian market in 2010 because of "too much T3" - while it is still available in Germany, Switzerland etc, and even in France (where it is called EUTHYRAL) !! We know the reasons for the withdrawal (the Belgian authorities requested new tests and new authorizations for "old" medications like Novothyral, which is from the 70s, and Merck didn't want to spend money for a drug which had a very tiny market. Our association, at that time, corresponded with Merck Belgium and tried to persuade them to stay on the market, because we knew that this was the only T3 medication available in Belgium (besides dessicated thyroid), but without success.
5. We indeed say that, for many patients, Novothyral contains too much T3 - after stating that an important number of patients do not feel well with 20 µg of T3, and have hyper symptoms like palpitations or sleep disorders. In people with a healthy thyroid, the T4:T3 ratio is approx. 10:1 to 12:1... whereas in Novothyral, a medication elaborated 50 years ago, the ratio is 5:1! Many patients who need a bit of T3 feel much better if they take approx 100 µg of T4 and only 10 µg of T3 - and it also seems much safer to introduce T3 progressively, not 20 µg at once. So, as explained in our FAQ article about combination treatment forum-thyroide.net/phpBB/ft... , we generally recommend, to patients in need of a combination treatment, to start with a very low dosis, e.g. 1/4 Novothyral, combined with 75 µg T4 - and, if that's not enough, to change to 1/2 Novothyral and 50 µg T4. This gives 100 µg of T4 and 5 or 10 µg T3, and is generally well supported. And of course, we strongly advise against self-medication, which can be dangerous!
Hoping this clarifies the situation, and the position of our organization!
We are no doctors, we just try to help patients, by providing information, exchange of experience and emotional support. And all we say about combination treatment is based on feedback from patients, over the 21 years of existence of our forum. We think that T3 can be useful, for some patients, and can improve the quality of life of those who need it (and several of our members - me included - have experienced this themselves!) But we do not think that it should be prescribed systematically, because we are aware of the risks, too.
So, I just saw on your forum that a British doctor alerted you to this post.
I would not call this forum "pro-T3" or "pro-fonctional" (pro-anti age) at all. On the contrary. this forum repeatedly tells people that everyone is different, that there is no minimal or maximal dosage, that we need what we need, that some do fine on levo only, others on NDT; some on T3+T4 and some on T3 only...so there is no one size fits all. If someone here says she is doing fine on NDT, she will not immediately be told by others that NDT contains too much T3 for humans...which is what I like about this forum.
But I guess it´s good news that British doctors visit this forum and read posts here...hopefully, they will learn something in the process.
I don't know this forum very well (I just discovered it) - I had the impression, by your first publication and some of the replies, that it was very much "pro-T3", but I might be wrong!
If you are telling people that everyone is different, then this is perfect !
And that's exactly what we do, too!
We also have some (not many) people on particularly high doses of T3, in the French forum, and we don't tell them they are "wrong" and that it's impossible to feel well with that treatment! But we try to make them aware of the risks (without frightening them) - because the risks exist, and can't be denied, it would be irresponsible not to mention them. So all we do is try to inform, to invite people to be careful... and even if everybody is different, I don't think one can say that "there is NO MAXIMAL DOSAGE" (even if some people need more than others!), because some people might be tempted to increase further and further, because they still don't feel well, and end up with serious health problems. Thyroid hormones can be dangerous (our forum also has a lot of Graves' patients, who sometimes have serious thyrotoxicosis due to their own, totally "natural" hormones, produced by their own body!), and it would be irresponsible not to say that!
I don´t consider this forum pro-T3. On the contrary - a moderator told a member the other day to try to optimise levo first as it´s easier to use and get a prescription for. So, nobody here is telling newly diagnosed patients to add T3 along with levo, or go on T3 only. Even members on T3 only advise them not to. But, if patients say they tried every dose of levo without getting rid of all symptoms, and lab results show high in range FT4, low TSH, and low FT3, even after optimising vitamin and mineral levels, it´s sometimes suggested they may need T3. We don´t talk about the risks as much here as you do, and the only side effects of T3 I hear about here are pretty benign, such as racing heart and anxiety. In such cases, they are advised to cut back on T3 and retest after a few weeks. T3 is seen as one of several options and may be the best for some. One thing I like about this forum is that there are several moderators, both on T4, T4+T3 and T3 only. There is always someone who can relate to what members experience. This is what makes this forum unique IMO. Before joining this forum, I visited the Stop the Thyroid Madness forum quite a lot, and there they claim NDT is the best drug for everyone and levothyroxine is useless. I strongly disagree, The problem with thyroid disease is that many patients know more about the disease and its treatment than doctors do. Many doctors also admit to knowing very little about thyroid disease. Most endocrinologists seem to be diabetes specialists. So, it´s no wonder people resort to self-sourcing drugs online. If doctors are so concerned, it would be better to prescribe T3 and monitor patients closely. If they show no signs of heart disease or osteoporosis, why not let them stay on T3 and continue to monitor them? I don´t think that you should deny a patient combination treatment based on the argument that you COULD develop heart disease or osteoporosis. After all, no doctor would refuse to prescribe prednisolone to a patient with rheumatoid arthrosis, although prednisolone has well-known side effects, especially at higher doses - including osteoporosis. And I doubt any doctor would refuse an increase in dose to relieve symptoms. Yet, when it comes to thyroid disease, treatment is denied based on the argument that it COULD have side effects.
I have been following this thread with interest. And, the thing that amazes me is that so many people – including yourself – recognised the forum in question from PurpleCat’s brief description. And, yet, you deny everything she says. Very strange that, don’t you think? I also recognised it and I haven’t been on your forum for years and years, and only spent a short time on there, anyway because I found it so negative and dogmatic.
So, if you don’t mind, I’d like to make a few observations…
1. BUT we are also aware of the risks of T3
So, what risks would they be?
much more powerful and much faster than T4
You are comparing apples and oranges. They are not the same thing, and do not do the same job. If you cannot convert T4 to T3, you cannot say that T4 has much power at all.
2. Yes, we think that not EVERY patient needs additional T3
So, why does a healthy thyroid make both T4 and T3? If all we need is T4?
many patients, after a period of adaptation, manage to correctly convert the T4 provided by levothyroxine into T3, the active hormone
I very much disagree with that. If you are a poor converter, you are a poor converter – unless you find the reason for you poor conversion, such as low nutrients, inadequate intake of calories, etc. But most poor converters never find why. And I doubt it has anything to do with ‘adaptation’. How long do you think this period of adaptation should be?
(by the way, in people with a healthy thyroid, their gland produces only 20% of the T3 they need, and 80% already come from conversion).
I think you’ll find that it’s actually higher than that… But I can’t remember the numbers. But, if that is the case, that is what a healthy thyroid does, then why not give a hypo patient 20% of their dose as T3?
That's why we say that doctors who systematically prescribe T3 to everyone (often in very high doses from the beginning) are "dangerous"
Sorry, not logical! First you say that it’s ‘normal’ to have both T4 and T3, and then you say that doctors who give all hypo patients both T4 and T3 are dangerous? So, in fact, what you’re saying is that it’s dangerous to have a healthy thyroid because it produces T3. Is that correct?
2. Yes, we are scandalized by the prices taken by some "anti-ageing specialists" or "specialists in functional médicine" - we know patients who took credits, spent thousands of Euros to pay for consultations, tests and prescriptions, without feeling better (and even worse).
More illogicality. Nobody forces anyone to consult an anti-aging/functional doctor. If they chose to spend their money on that then that is their business. By all means warn them that it will be expensive, but then they make their own decisions.
Autrement dit: it's none of your business.
We have several discussions between patients who had a bad experience
I don’t think I’ve ever had a good experience with any doctor of any type. So, I’m really not surprised when other people have bad experiences. But it sounds as if you’re saying that they had a bad experience because it was an anti-aging/functional doctor. What about people’s bad experiences with GPs and endos – or neurologists or cardiologists – or even dentists, come to that? Why single out anti-aging/functional doctors?
5. We indeed say that, for many patients, Novothyral contains too much T3 - after stating that an important number of patients do not feel well with 20 µg of T3, and have hyper symptoms like palpitations or sleep disorders.
Palpitations and sleep disorders can be symptoms of under-medication. Certainly 20 mcg T3 can be too much for some people – I wouldn’t have said ‘many’ – but in that case, they could take half a tablet and make the rest of their dose up with levo. But, if it’s the case that Novothyral contains too much T3 for many people, why fight to keep it on the market?
In people with a healthy thyroid, the T4:T3 ratio is approx. 10:1 to 12:1... whereas in Novothyral, a medication elaborated 50 years ago, the ratio is 5:1!
Ratios have nothing to do with treating hypothyroidism. Ratios are for healthy people. A hypo needs what she needs, in whatever proportions that make her well. It is not helpful in any way to compare a hypo with a euthyroid person. Everything is turned upside down when you become hypo – as you should know. We have to adapt to a completely different way of functioning. If anybody tried to force me to take a T4:T3 ratio of 10:1, I would be very, very ill. So, forget ‘healthy thyroids’, they have nothing to do with us. This is the mistake so very many doctors make that keep us ill.
Many patients who need a bit of T3 feel much better if they take approx 100 µg of T4 and only 10 µg of T3 - and it also seems much safer to introduce T3 progressively, not 20 µg at once. So, as explained in our FAQ article about And of course, we strongly advise against self-medication, which can be dangerous!
For many people on this forum, if we didn’t self-treat we would be dead by now. Myself included. You are making the mistake of thinking that people are too stupid to treat themselves safely. But, if your doctor doesn’t have a clue, what are you supposed to do? Hypo patients are very often far better read than the majority of doctors and know far more about thyroid. Especially those that self-treat. Instead of ‘strongly advising’ against self-medication, why not help people to do it safely?
I had the impression, by your first publication and some of the replies, that it was very much "pro-T3", but I might be wrong!
You make it sound like a crime to be ‘pro-T3’. We are neither pro nor anti. We believe, as I said, that everyone needs what they need and would never try and discourage anyone from taking T3, NDT or even levo! That sort of attitude doesn’t help anyone. Support means giving people the facts so that they can make their own decisions like the adults they are, and not lecturing or vilifying any one form of thyroid hormone replacement.
We also have some (not many) people on particularly high doses of T3, in the French forum, and we don't tell them they are "wrong" and that it's impossible to feel well with that treatment! But we try to make them aware of the risks (without frightening them) - because the risks exist, and can't be denied, it would be irresponsible not to mention them.
OK, so mention them. What are the risks?
I think this post might interest you, written by one of our most knowledgeable members:
I don't think one can say that "there is NO MAXIMAL DOSAGE" (even if some people need more than others!), because some people might be tempted to increase further and further, because they still don't feel well, and end up with serious health problems.
Such as? So, what would you put the maximal dosage at? Give us a number. In the good old days, before the invention of the dreaded TSH test, people were prescribed as much as 600 mcg levo. Possibly more, I don’t know. They did just keep increasing til they felt well.
In any case, it's not the size of the dose that is important, it's how much you absorb.
Thyroid hormones can be dangerous (our forum also has a lot of Graves' patients, who sometimes have serious thyrotoxicosis due to their own, totally "natural" hormones, produced by their own body!), and it would be irresponsible not to say that!
Oh please! You cannot compare Graves’s patients with hypos taking exogenous hormone. The effect is totally different. And what hypo would take such a large dose that their FT3 went up to 30 and over. It just wouldn’t happen. They’d feel far too ill before they got that far, and reduce. Also, the problem with Graves is that they can have these very high levels long-term. That would not happen with a treated hypo.
And I say this for Novothyral/Euthyral, with synthetic T3... even if the ratio in NDT might be the same, it's certainly not absorbed the same way, as this is dissicated animal thyroid.
So, are you talking about absorption in the gut? Or absorption at a cellular level? And, what exactly is the difference between synthetic and animal T3?
we know that hyperthyroidism can cause serious heart problems, ostéoporosis etc.
So can hypothyroidism and under-medication.
We are totally aware that the treatment and care of thyroid patients is not optimum, that "classic" doctors often don't have enough time, enough patience...
Or enough knowledge!
And that's the advantage of an anti-aging doctor: they know their hormones. A normal endo, although the name suggests he should know about all hormones, will only know a little about insulin and diabetes - most of them are diabetes 'specialists', it's very, very rare to find a thyroid specialist.
there's a difference between the T3 level in the blood and the T3 really usable by the different organs of the body
Depends if you measure the FT3 or the TT3. The Free T3 is the T3 available for use by the body. But, of course, a blood test just tells you what is in the blood, it can’t tell you what is getting into the cells.
(various organs participate in the conversion process and are able to produce the T3 they need directly on site, by converting T4) - that's why the T3 value in the blood is not totally reliable as an indicator to see whether a patient needs, or doesn't need, additional T3!
But, if you are a poor converter, that will show up in the blood test – comparing FT4 levels with FT3 levels – and if you are a poor converter, there’s not much conversion going on ‘directly on site’ so the blood test will tell you if the person needs additional T3.
I could go on, but it’s late and I’m tired. Suffice to say, I think a lot of Purplecat’s comments are based in fact. You do name some doctors, but it’s not just that the problem. Some of the things you say about them are down-right libellous, and I’m surprised they haven’t sued. And, I’m wondering, have you ever seen one of these doctors yourself? How much do you really know about them?
I just found a great article on T3 + T4 combination treatment. It´s in German, but I read somewhere that you are half German so don´t think that will be a problem. This article also mentions how patients in German thyroid forums are being told to stay away from T3 and take levothyroxine only, which is of course the position defended by doctors in general and endocrinologists in particular. Interestingly enough, a T4:T3 ratio of 4:1 is found in porcine thyroid and a ratio of 5:1 in bovine thyroid and synthetic combo drugs such as Novothyral and Euthyral. There is only one combo drug on the market with a 10:1 ratio - it´s called Prothyrid. I think the author of this article makes some compelling arguments that I have copied and translated below:
Theoretisch könnten Menschen auch ohne T4 leben, indem sie genügend T3 zu sich nehmen.
In theory, a person can survive without T4, as long as s/he takes enough T3.
Die Schilddrüse produziert pro Tag ca. 100 µg T4 und ca. 10 µg T3. Zusätzlich werden durch so genannte Konversion (=Umwandlung) etwa 20 – 25 µg T3 aus dem produzierten T4 hergestellt, so dass täglich 30 – 35 µg T3 für den Organismus zur Verfügung stehen.
Es stimmt also nicht, dass das ideale T4:T3 Verhältnis der gesunden Schilddrüse 10:1 ist. Deswegen empfehle ich persönlich auch nicht Prothyrid.
Auch wurde in Studien ein T4:T3 Verhältnis von 4:1 oder 5:1 mit den wenigsten Nebenwirkungen beobachtet, im Gegensatz zu einem T4:T3 Verhältnis von 10:1 wie bei Prothyrid. Deswegen kann ich auch Patienten, die Thybon zusätzlich einnehmen möchten, nur empfehlen, Thybon möglichst in einem T4:T3 Verhältnis von 4:1 oder 5:1 mit L-Thyroxin zu mischen.
A healthy thyroid gland produces ca 100 µg of 4 and ca 10 µg of T3 daily. In addition, ca 20-25 µg of T3 will be produced through T4 to T3 conversion. This means a total of 30-35 µg of T3 daily is made available to the body.
So, it´s not true that the ideal T4:T3 ratio in a healthy thyroid gland is 10:1. For that reason, I personally do not recommend Prothyrid.
Also, studies have shown fewer side effects when the T4:T3 ratio is 4:1 or 5:1, compared to a T4:T3 ratio of 10:1 as in Prothyrid. Therefore I recommend that patients who would like to take Thybon mix it with levothyroxine to achieve a T4:T3 ratio of 4:1 or 5:1.
MY COMMENT: I have read that the total amount of T3 available to the body after conversion may be closer to 50 µg daily in some individuals, which would explain why some people improve on 2 pills of Novothyral/Euthyral daily, 50 µg of T3, or 5 grains of NDT.
Examples of how T3 can be mixed with T4 to achieve a T4:T3 ratio of 5:1:
Hier eine Übersicht für die Mischung von L-Thyroxin mit Thybon 5:1:
12,5 T4 + 2,5 Thybon
25 T4 + 5 Thybon
50 T4 + 10 Thybon
75 T4 + 15 Thybon
100 T4 + 20 Thybon
125 T4 + 25 Thybon
150 T4 + 30 Thybon
175 T4 + 35 Thybon
200 T4 + 40 Thybon
I totally agree with greygoose about the comparison between euthyroid individuals and people with hypothyrodism. Hypothyroidism changes not only how we produce, but also use, thyroid hormone. For instance, chronic inflammation is known to reduce T4 to T3 conversion. The most common cause of hypothyroidism is Hashimoto´s caused by inflammation. So it would make sense that conversion is impaired in many patients with Hashimoto´s. Another reason I think you cannot tell a hypothyroid person to aim for the exact same ratio of hormones produced in a healthy person. Even if we take 10 µg of T3 daily along with T4, we may not convert enough T4 to get 30-35 (let alone up to 50) µg of T3 every day. Taking 10 µg of T3 daily with levothyroxine requires you to have optimal T4 to T3 conversion. And, as Greygoose points out, it´s not always possible to achieve that in hypothyroidism.
Well, Béate, no everyone on this forums speaks French, so I think it would be interesting to see what you say in one of the texts linked to above:
"L'Euthyral® est un médicament très ancien, pas très bien dosé, car "trop dosé" en T3 (à l'époque, suite à des essais sur des rats, on pensait que ce dosage convenait, mais les rats ont apparemment besoin de plus de T3 que nous ...) : le rapport T4:T3 est de 5:1, alors que chez quelqu'un en bonne santé, avec une thyroïde qui fonctionne bien, il est plutôt de 10:1 à 12:1.
Le plus souvent, 5 à 10 µg de T3 sont tout à fait suffisants pour obtenir un bon équilibre et une TSH suffisamment basse, tout en gardant la T3 et T4 bien dans la norme, et le patient en bonne santé. Vu que ce dosage n’existe pas tout prêt, il faut alors « combiner » : 1/4 ou 1/2 Euthyral, combiné au Levothyrox (on peut p.ex. obtenir 10 µg de T3 et 100 ou 125 µg de T4 en combinant ½ Euthyral et 50 ou 75 µg de Levothyrox)." Translation:
"Euthyral is an old-fashioned drug which contains too much T3 (at the time, they experimented on rats and believed that was the right ratio, but rats apparently need more T3 than humans do...)..the T4:T3 ratio is 5:1, but someone with a healthy thyroid gland has a ratio of 10:1 to 12:1. Most of the time, 5 to 10 µg of T3 is enough to create hormonal balance and a low enough TSH, while maintaining in-range FT4 and FT3 levels. SInce there is no drug containing this ratio, you have to combine 1/4 or 1/2 pill of Euthyral with 50 or 75 µg of Levothyrox".
What you are saying is that not only Euthyral/Novothyral is an old-fashioned drug containing too much T3, but that NDT (by its very ratio) also is. So, logically, nobody could ever feel optimal on Euthyral or NDT only...let alone on T3 only.
So, what you are basically saying is that everyone has optimal T4 to T3 conversion.
When you say "too much T3", I have to ask: too much T3 for whom??? For people with serioulsy decreased conversion who cannot recover on any amount on T4, it may not be too much...
Also, what do you say to people who need more than 100 µg of levo? Are they also taking too much?
What do you say to people who do best on T3 only...because there are people like that on this forum?!
Also, I find the fact that you discuss doctors openly on your forum appalling. You even provide links to discussions about individual anti-aging doctors in Belgium. There, patients who feel they paid too much, did not recover fast enough, did not get the drugs they wanted, or are otherwise unhappy, can complain and get a lot of sympathy. Others will follow suit and those doctors will be branded unprofessional and dangerous although they have helped many other people.
One thing I like about this forum is that you cannot name doctors without their approval. I think it´s dangerous to let patients start complaining about individual doctors because you have no way of knowing how well-founded these complaints are. I get the distinct impression you are especially targeting doctors in Belgium prescribing NDT/Euthyral and other hormones, such as hydrocortisone for adrenal fatigue, and sex hormones.
You state that most patients will end up feeling well on levothyroxine once stablised. Do you have any proof of that, other than articles by doctors who believe that all patients should be on levo and have an in-range TSH? This forum is proof that isn´t the case. If that were true, nobody would be here complaining about remaining symptoms of hypothyroidism year after year, until those symptoms magically disappear once they go on T3 or NDT. How do you explain that...because we are after all talking about human beings, not rats?
Are you hypothyroid yourself and optimally medicated on levothyroxine? In that case, congratulations. But not everyone is as lucky as you are. I think you should keep an open mind and accept that not everyone will feel optimally medicated on levothyroxine or a maximum of 10 mcg of T3 daily.
1) As I wrote above, I have been on T3 myself (or, more exactly, TA3, tiratricol) for 12 years! Yes, I am hypothyroid! I had a total thyroidectomy in 2000, for cancer! At that time (2 years after my cancer ), I had difficulties to recover from my third hormone withdrawal for radioiodine treatment and whole body scan, levothyroxine alone was not longer sufficient, I felt tired, brain-fog and depressed. I asked my doctor what to do. She told me that T3 (Cynomel) might be too "strong" in my case (I had had a prescription of "T3 alone", Cynomel, during my three 4-weeks withdrawal phases, each time for the first 2 weeks, and felt totally "doped", very nervous, sleepness, with a heart rate of 180, even after lowering the dose from 50 to 25 and then to 12,5 µg per day), and she prescribed Téatrois (tiratricol), a T3 metabolite which has recently been taken off the market. I have been combining T4 and TA3 for 12 years, slowly lowering the dose because my needs decreased: 175/30 in the beginning, and later 150 and then 125/30 and in the end 125/15.
During a shortage of the drug in 2014 (which was not reimbursed, and very expensive, 60€), I gradually stopped it, over several weeks. And I continued to feel OK, so I've never taken it again. Apparently, changing my nutrition (due to diabetes: I switched to "low glycemic index" and later to LCHF/cetogenic diet) and doing sports on a regular basis helped me a lot and improved my T4:T3 conversion.
2) Yes, your citation is exact, I regularly say that "Novothyral/Euthyral is an old drug" (it's from the 70s) - and that the T4:T3 ratio of 5:1 is "too much FOR MANY PEOPLE" (even if there might be people who support this ratio)! You can't deny that in people without any thyroid problem, the natural T4:T3 ratio is mostly around 10:1 or even 12:1, can you?
And I say this for Novothyral/Euthyral, with synthetic T3... even if the ratio in NDT might be the same, it's certainly not absorbed the same way, as this is dissicated animal thyroid. So no, I never pretended that "nobody can ever feel OK on NDT, or on Novothyral"... I just try to warn people that the entire standard dose MIGHT be too strong, especially in the beginning, and that it's better to be careful and to introduce it progressively (5 µg, then 10, etc. Switching directly from 0 µg to 20 µg of T3, which has an immediate action, can be dangerous, we have testimonies from patients who experienced serious cardiac troubles after introducing T3 too quickly, and these troubles sometimes continued even after stopping the medication.
3) Normally, we avoid indicating any names in our forum. But some of these doctors (we name only 2 or 3) sometimes made prescriptions which were really dangerous and inadequate... and the same doctors are present everywhere on the Internet, write books, publish videos (and we also give the links to these books and videos), so everybody knows who we are talking about.
4) We know that patients are very different, have very different needs - many feel good on T4 alone, some need a bit of additional T3, and some might even need high doses of T3 (even if we remain very hesitant regarding "T3 only", which seems very far from what the body produces when the thyroid works correctly!) We try to be as open-minded as possible! But we don't want to put people "at risk", we know that hyperthyroidism can cause serious heart problems, ostéoporosis etc. We've seen too many patients who believed that T3 was "the ultimate solution for their problems", but who ended up very disappointed, with even more problems than before. That's why we insist on the importance of being careful, of introducing and increasing the dose VERY progressively!
We are totally aware that the treatment and care of thyroid patients is not optimum, that "classic" doctors often don't have enough time, enough patience... that much more research is necessary, not only on the drugs themselves, but also on all the other means to improve hormonal balance and wellbeing. There's no "miracle solution", no "one fits all"!
And I think that what counts most is empathy, and tolerance!
I don´t necessarily believe that we should try to copy what happens in a person without thyroid problems. This means that I am not sure that if a person with a working thyroid feels good with a TSH around 1, and a T3/T4 ratio of 1:10, that a person with a thyroid problem will automatically feel best on that ratio also. Because, it would seem hypothyroidism itself affects T4 to T3 conversion in many people. Some can improve it by correcting mineral and vitamin deficiences, and that advice is often given here to people who want to try T3. But I think it´s too simplistic to simply say that we should aim for the same hormone levels and ratios as those found in a healthy person. A hypothyroid person may have absorption problems that a healthy person doesn´t have. To say that 75-100 mcg of levo is enough for evyerone will not help people who only absorb half of that amount. Also, the reference range for the TSH is too wide - even many doctors acknowledge that. The TSH should not be above 2; yet, many doctors are happy with a TSH of 4.5 or 5. So, at the very least, the TSH reference range should be lowered to 0.4-2.5 as suggested by some more open-minded doctors. Another problem is that many thyroid patients never had their levels tested when they were still healthy, so they have no way of knowing which levels to aim for once on thyroid hormone replacement. Let´s imagine my TSH when my thyroid was still working was 0.8. Then, a doctor puts me on levo and says that a TSH of 2 or 3 is fine (many doctors do think that). Of course I will not feel as good as I did when I had a lower TSH. But my point is that no doctor can tell me where I need to be to feel fine. As is often said on thyroid patient forums: we are patients, not lab results.
If you were correct, then every thyroid patient on 75-100 micrograms of levo would recover and get symptom-free. The fact that hundreds of people join this forum every year to discuss why they fail to recover on levo is proof enough to me that things are not black and white, and that what applies to a person with a healthy thyroid gland may not be true for thyroid patients.
I have often wondered why a suppressed TSH is OK and even necessary in thyroid cancer patients, whereas it is considered dangerous in other thyroid patients? Where is the logic to that?
I notice that, on your forum, you mention the TSH a lot and the importance of a normal TSH. Which is of course how most doctors tend to treat thyroid disease. And that is the reason forums such as this one are needed.
Before the "ultra-sensitive" TSH test and levo were invented, doctors used NDT and dosed by symptoms, not labs. If what you are saying is true, they would all have been overmedicated and possibly even dead from a thyroid drug overdose. Yet, it would seem many patients felt their health going downhill when they were switched to levothyroxine. They felt worse, not better, when doctors switched them from NDT to levo.
Also, you have to distinguish between what is in the blood and what´s on cellular level...your thyroid hormone levels in blood can look good but they are not entering the cells where the metabolic activitiy takes place. It is my personal experience that the TSH is NOT the best indicator of thyroid health, and really does not say much about anything.
One thing you keep saying on your forum is that the antiaging doctors are "self-taught GPs" ("des généralistes autodidactes"). Does that mean that you think that endocrinologists are the best doctors to diagnose and treat thyroid disease?
Your experience - that levo worked as well as a combination - does not apply to everyone. You are lucky to have been able to go off combination treatment and feel just as well on levo.
I NEVER ever said that "75 to 100 µg of T4 are sufficient for everyone"!! 🥴
If you visit our forum, you will notice that in nearly every discussion, we tell patients that personal needs are VERY variable, and can be very low for some, and very high (the double, or more) for others, independently from their body weight. We explain that, after thyroidectomy, the body weight is used to calculate the initial dose of the treatment, on a basis of 1,3 to 2 µg per kg (starting relatively low, because hypo is less dangerous than hyper), but that then the values are checked after 6-8 weeks and the treatment adapted. We always try to reassure the patients and to tell them that they don't have to worry for the dose (some take 75 and others 200 µg or more, for the same weight!), as long as their blood results are OK and they feel well...
And that's precisely why I find Euthyral/Novothyral so difficult to use! There is only ONE dosage, 100/20... and for people who need more than 100 µg of T4, increasing their daily dose to 1,5 or even 2 tablets results in a very high dose of T3, 30 or 40 µg, which is "too much" for many, resulting in palpitations, insomnia etc (even if it might be OK for some patients).
That's precisely the reason why we often recommend, either to combine Euthyral/Novothyral with levothyroxine (to adapt the T4 and T3 dose separately), or to combine levothyroxine and Cynomel. I know that in Germany, there are other combination drugs, i.e. one with 100 µg of T4 and only 10 µg of T3, and also T3 tablets with 10 µg, in Canada they have Cytomel with 5 µg... in France we only have Cynomel 25, so we recommend to start with 1/4 and then 1/2, which, according to the testimonies of many patients on the forum, can already greatly improve the well-being of patients who need T3.
And using 1/4 and 1/2 tablets (in combination with separate T4) also allows a PROGRESSIVE INTRODUCTION (without lacking T4), which, according to our experience, is absolutely mandatory.
Regarding the theory about the different hormonal needs in patients with and without thyroid problems, they are certainly true, and it's regrettable that there's so little research, despite the fact that so many thyroid patients "feel unwell" even with "correct" blood levels.
And of course (and I often say that in my contributions), TSH is a "primary indicator", but not always sufficient - and there's a difference between the T3 level in the blood and the T3 really usable by the different organs of the body (various organs participate in the conversion process and are able to produce the T3 they need directly on site, by converting T4) - that's why the T3 value in the blood is not totally reliable as an indicator to see whether a patient needs, or doesn't need, additional T3! There are several factors to take into account. A high T3 might be a warning signal not to "over-dose" a patient. But a low T3 in the blood doesn't automatically mean a patient needs additional T3 - if I take my personal example, my T3 is frequently low or even below the tolerance, but I feel fine. I'm not a doctor, but my theory is that apparently my organs (liver, muscles, brain, heart...), over the time, adapted to the situation and are now more able to convert the T4 circulating in the blood to T3, directly on site, where it is needed (and that a well-adapted diet and sports are helpful for this).
As I said in my previous message, combined T4+T3 in NDT is certainly not comparable to synthetic drugs (even if the T4:T3 ratio is more or less similar)! I know that natural thyroid extracts have been used for over 100 years, and that many patients (not all) feel perfectly fine with them! The T3 in this natural dessicated thyroid is certainly absorbed differently, and more progressively, than in a synthetic drug, and so it's better dispersed over the day and much less dangerous,
As for the anti-ageing doctors, it's certainly not useful to start a debate. I don't deny that "functional medicine" has many good ideas and that it's important to take the patient globally, and not "organ by organ". And it's a fact that the thyroid takes only a few hours during the medical studies, which is absolutely regrettable! There's a lot of things that need to be changed! But I don't agree with the "business" that this has become, with totally overpriced consultations and prescriptions, and that only "wealthy" patients can afford to search for adequate care (which, in some cases, is not adequate, but dangerous, as I already told you, we have several testimonies) - and that some, who can't afford to consult, may be pushed in to self-medication, which can be dangerous.
And it's regrettable to give false hope - there is no "miracle drug", neither T3 nor any other "supplement", they help some patients, but not all. And ALL doctors should have/take the time to listen to their patient, to follow him closely, to adapt the treatment by small steps, looking not only on the blood values, but also on the well-being, to show empathy - which is at least as important as the treatment itself.
PS. I should add that the best thyroid book I´ve read (and I´ve read lots of them) was written by a thyroid patient - Paul Robinson, who is himself on T3 only and has been for about 20 years. I warmly recommend this book - "The thyroid patient´s manual". He stresses that T3 only should be the last resort, and only tried once everything else has failed, as T3 only therapy is harder to manage.
In his book, Paul R comments on T4 only treatment: "T4-only is probably the worst of all the available treatments, but it is often the only one offered. On the upside, managing dosage is very straightforward, as it only needs to be taken once a day. It is also the cheapest of the treatments. On the downside, it simply may not allow someone to recover. This will be compounded if the doctor involved is only looking at TSH to manage the treatment. I would personally not recommend this form of treatment(...)" (p. 121).
His experience - that T3 only works best - is as valid as yours; that is, that levo can work just as well as combination treatment.
I think every doctor and patient should read Robinson´s book as it gives an extensive overview of all the available treatments and their advantages and disadvantages. Although he does not personally recommend levo only treatment, he does say that it can sometimes work well, but that it leaves many patients with lingering symptoms. And, when I read posts here by new members, I realise that is true. Most of them ask why levo isn´t working. Sometimes, it´s easy to tell why - their TSH is in the hypothyroid range and doctors clearly keep them undermedicated out of ignorance. Many doctors do recognise they know nothing about thyroid disease and have only heard of levothyroxine.
I only need to look at my own experience to know it´s not black and white. I have a colleague who had a total thyroidectomy 11 years ago. She never was hypothyroid, she just had her thyroid gland removed due to cancer and then put on levo the next day. She has remained symptom-free on 125 mcg of levo daily. I, on the other hand, have Hashimoto´s so still had some thyroid gland function left when diagnosed. I have never felt even remotely human on anything less than 175 mcg of levo daily, despite having some own thyroid hormone production. Which makes me think that people who live with hypothyroidism for years before being diagnosed (as most Hashimoto´s patients do) develop symptoms that people who are never hypothyroid don´t. I personally believe it is linked to adrenals (which Paul Robinson has also written about in another book called "Recovering with T3") which in turn affects blood sugar metabolism, insulin production, and sex hormone secretion. Simply put, many patients with Hashimoto´s seem to develop symptoms that are not only thyroid-related, but also caused by adrenal , pancreatic, and ovarian dysregulation. All endocrine glands interact, so if one is dysfunctional for years, it makes sense that the whole system ends up imbalanced. And my own experience is that, taking levo only will not correct all that, and that is the reason many patients remain symptomatic despite a normal TSH on levo. Hence my argument that we cannot look at how much thyroid hormone a healthy person secretes in a day and assume we should imitate that.
To sum up, we can feel bad because 1. we are not converting enough T4 to T3 and 2. we have other glandular problems which affect our well-being. And, as long as most doctors fail to acknowledge that, patients will continue to see functional doctors or order their own drugs online.
If it seems that the so called functional doctors prescribe mostly T3, I believe that is because the patients who come to see them have tried and failed T4 only therapy. After all, a patient who is doing fine on levo with a normal TSH can see any doctor, so there is no need to travel abroad and pay more to see a functional doctor. Most patients who come to them have seen several doctors but felt nobody took them seriously. What I mean is that those doctors do not prescribe T3 to everyone, because they don´t see all thyroid patients. They mainly see patients who fail to recover on levo only therapy. And, as for them charging a lot; well, they are in private practice, so have to pay their own salary, rent, holidays, health insurance, pension funds, possibly salaries to secretaries or receptionists.
You often say on your forum: "A doctor who prescribes T3 to everyone is dangerous". Well, I would say that doctors who put their patients on oral estrogen and synthetic progesterone are dangerous as well. Yet, most conventional doctors prescribe oral estrogen to menopausal women. Oral estrogen has to be broken down by the liver and is known to increase the risk of blood clots. The so called functional doctors only prescribe bio-identical transdermal estrogen and bio-identical progesterone. That is actually an area where they pose less of a risk to their patients than conventional doctors...!
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More of a rant than a post. Sorry!
