Beate
Inscrit le: 10.10.00 Messages: 49855Carcinome papillaire... 60+ |
Message:
Posté le: 06. Oct 2021, 22:00
 Merci. Ce message m'a été utile ! dit : wynnie
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Bonsoir,
un médecin anglais m'a fait remarquer qu'on parlait de nous sur un forum anglais... un forum apparemment très "pro-T3" et pro "médecine fonctionnelle".
Or, la personne qui a rédigé cet article a apparemment mal compris nos positions, notre site n'est absolument pas "anti-T3" par principe... nous disons juste que la T3 ne devrait pas être prescrite de manière systématique, car tout le monde n'en a pas besoin et que la T3, plus puissante et plus rapide que la T4, peut aussi être plus dangereuse. Pour cela, nous nous basons sur les expériences rapportées sur le forum, au fil des années : car en effet, si certains patients qui souffrent d'une mauvaise conversion retrouvent parfois la forme en ajoutant un peu de T3, d'autres, à qui on avait parfois prescrit la T3 sans véritable nécessité et en l'introduisant beaucoup trop brutalement, ont parfois eu de gros soucis de santé. Donc, tout ce que nous faisons, c'est informer, et conseiller la prudence !
Je viens de rédiger une réponse très polie, on verra si elle reste en ligne - et s'il y a des réactions ?
Le site : https://healthunlocked.com/thyroiduk/posts/146896746/when-thyroid-forums-do-more-harm-than-good
Le titre "Quand des forums "thyroïde" font plus de mal que de bien" (sic...)
| Citation: | When thyroid forums do more harm than good
You can count on the moderators of this forum (healthunlocked) 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! |
Ma réponse :
| Citation: | Dear PurpleCat71,
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:  Sujet
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: Sujet
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.
We regularly informed the Belgian patients about the situation: Sujet
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 Sujet , 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.
Best regards
Beate Bartès
Forum Vivre sans Thyroïde
forum-thyroide.net |
Dernière édition par Beate le 12. Oct 2021, 11:48; édité 1 fois |
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Beate
Inscrit le: 10.10.00 Messages: 49855Carcinome papillaire... 60+ |
Message: 
(p547333)
Posté le: 12. Oct 2021, 10:39
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Bonjour Paloma,
Merci pour ta réponse !
Non, ce forum n’est apparemment pas totalement « pro-T3 » (comme je le pensais au départ). Reste que certains de ses membres semblent avoir des avis très tranchés sur la question, et ne supportent aucune remise en question, ni qu’on ose critiquer certains médecins.
Je ne sais pas si tu as regardé les échanges, suite à ma réponse ? C’est décourageant et épuisant, avec certains c’est un véritable dialogue de sourds (les réactions de Puplecat, avec un article en allemand, et surtout de “greygoose”, à ma dernière réponse, s’il y a 2/3 jours).
Et pourtant, nos positions sur VST sont en fin de compte pas si éloignées que ça de celles défendues par Purplecat ?? Mais d’autres sont beaucoup plus “extrémistes”.
Se faire critiquer aussi durement, « un forum qui fait plus de mal que de bien », alors que nous parlons pourtant régulièrement de T3, de NDT, et laissons tout le monde s’exprimer - juste parce que nous osons dire que chacun est différent, qu’il n’existe pas de produit « miracle » et que nous conseillons juste de la PRUDENCE, ça fait mal au cœur !
Pour l’instant je n’ai pas répondu aux derniers messages, et je ne suis pas certaine que cela soit utile… c’est déjà suffisamment de travail de s’occuper de l’association et du forum et groupe FB français, je ne peux pas, en plus, essayer de raisonner un groupe anglais…
Et encore… celui-là n’est pas tellement « extrémiste », il y a bien pire (« stopthethyroidmadness » etc).
On se sent parfois bien impuissant…
Beate |
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Forums Thyroïde
