Discussion of NDT use (mainly in German) - Thyroid UK

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Discussion of NDT use (mainly in German)

diogenes profile image
diogenesRemembering
24 Replies

This paper discusses the use and acceptance of NDT (DTE) in therapy. Most is in German, but you can translate it bit by bit using Googe Translate. It does suggest that NDT has a role in therapy for those who need it.

Journal für Klinische Endokrinologie und Stoffwechsel

November 2019, Volume 12, Issue 4, pp 159–164 | Cite as

Rolle der bioidenten Schilddrüsenhormone in der Behandlung der Hypothyreose: Ein Update

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diogenes profile image
diogenes
Remembering
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TSH110 profile image
TSH110

To be found here:

link.springer.com/article/1...

shaws profile image
shawsAdministrator in reply to TSH110

Thanks for that TSH110,

jgelliss profile image
jgelliss in reply to TSH110

It would be appreciated if we can get the English translation of this article . There is most definitely great use for NDT .Especially for thyroid patient that have difficult time dosing with synthetic T3 and *need* some T3 for their *Optimal* well-being .

TSH110 profile image
TSH110 in reply to jgelliss

Fraid I don’t sprekenzie deutch - it was just a link to what diogenes referred to in his post info above which he suggested to use google translate to get the gist. Please don’t shoot the messenger! Now if it were Spanish I probably could translate it to English!

I imagine almost everyone on thyroid hormones has a need for NDT - but we are denied it so you are absolutely right that we need an English version to see what it says. Perhaps a forum member has the skills to give us a version in English re the NDT.

jgelliss profile image
jgelliss in reply to TSH110

Love your sense of humor TSH110. Keep smiling and you'll make the whole world smile too .

TSH110 profile image
TSH110 in reply to jgelliss

😎

shaws profile image
shawsAdministrator in reply to TSH110

Why did the professionals in the UK - who you would imagine to be far more knowledgeable than us 'poor' 'sick' unwell people who haven't a clue why levothyroxine isn't working for us, even though it seems to suit many people with hypo and to have NDT also withdrawn in the UK due to the Organisation having to resort to False Statements in order to get it withdrawn along with T3.

As well as many people remaining undiagnosed due to the lack of knowledge of clinical symptoms by the medical professionals and the fact that they seem to think clinical symptoms have no input in the diagnosing.

We know damned well that NDT can work (Hilary Clinton is one of the famous) and other famous people are below who can afford to pay for their treatment and by their pictures - life is good:-

verywellhealth.com/celebrit...

- otherwise people would not have been able to restore their health since 1892 and didn't die a horrible death. That is when doctors knew the clinical symptoms and the patient had a trial of NDT.

We're now so far advanced in having options but, in the UK, denied a trial of T4/T3, NDT, or T3. Fortunately on this forum there are excellent scientists etc and it seems that none of the professional endocrinologists seem to read these reports that some people may recover on options rather than levothyroxine so they should be entitled to trials of options. Options have now been withdrawn and some poor souls have nowhere to get information, especially if they've no online option.

I couldn't recover on levo which actually made me feel far more unwell than before being diagnosed. What happens? Doctor only looks at a TSH result and tells you that you have no problems, results are 'in range'. What about symptoms? "symptoms" - What are they????

TSH110 profile image
TSH110 in reply to shaws

I could not agree more it is a sorry state of affairs. This site saved my life and gave me the resolve to escape from the T4 only tyranny, on to NDT. I was lucky, but I feel sorry for those less fortunate who remain feeling dire either because they are left under medicated or they end up with abnormally low T3 and long term health issues - the poor souls you mention. I hope that one day we will get proper choice in which therapy we wish to pursue. Thank goodness we have this forum including exceptional scientists and so many helpful abs supportive members 😊

shaws profile image
shawsAdministrator

Will the BTA et al read this and/or accept what it states? I do hope so. There are so many struggling daily and no solution coming forth from the BTA et al.

RedApple profile image
RedAppleAdministrator

For ease of reference, here's the English version of this paper's abstract, copied and pasted directly from the page. To read any more, you will need to go here and translate from German link.springer.com/article/1...

Abstract

This short overview comments on the role of bioactive thyroid hormones (desiccated thyroid extract [DTE]) in the treatment of hypothyroidism. DTE has been available since the end of the 19th century. Cattle, sheep and pig thyroids used to be the main sources. Today, mainly pig thyroid glands are used.

However, the varying content of thyroid hormones in these extracts has become a problem. Therefore, the US Pharmacopeia defined the content of L‑thyroxine (T4) and L‑3,5,3′-triiodothyronine (T3), but without defining the content of the other compounds present in animal thyroids.

DTE is not approved by the Food and Drug Administration (FDA). Approval does not seem to be necessary since it was “grandfathered in.” (Substances on the market before new FDA approval rules were implemented do not need approval.) The consequence of this fact is that the FDA does not examine the content and quality of DTE. In the US and in most European countries DTE can only be purchased in pharmacies with a prescription.

L-Thyroxine monotherapy is the standard treatment for hypothyroidism. A price comparison in Austria shows that DTE is at least ten times more expensive than L‑T4. European and even more so US guidelines recommend against DTE. The US guidelines argue that the relatively high T3 proportion (T4:T3 being 4:1) bears the danger of hyperthyroidism and that longtime safety studies are lacking. There is only one short-term study that compares L‑T4 with DTE treatment of hypothyroidism. This double-blind cross over study shows no evidence of an advantage of DTE. The parameters of quality of life were not significantly different. However, the majority of the unblinded patients would have preferred continuation of treatment with DTE.

European guidelines suggest trying DTE (or T4/T3 combination therapy) only in hypothyroid patients who continue to complain of symptoms in spite of adequate L‑T4 monotherapy for several months. DTE treatment should be re-evaluated after three months and stopped if there is no evidence of success. Finally, this short review also discusses the acceptance of the guidelines by the treating physicians and their patients.

TSH110 profile image
TSH110 in reply to RedApple

Double blind garbage! The patients preferred it but it but there was no evidence of any advantage of DTE. If that isn’t evidence of an advantage then what exactly is? God preserve us! I don’t need any double blind clap trap I know it has huge advantages over LT4 mono torture I mean mono therapy therapy. 😬 it should be a basic human right that we should be able to choose this medication if we like it better than what they force us on to.

Ta for the English (and allowing my blood to boil 🤬on such a nippy day 😂🤣😂)

shaws profile image
shawsAdministrator in reply to TSH110

Don't forget that the pharmaceutical companies have to make profits and if we're 'well again' they will lose out especially when we're given 'other prescriptions' to try to control remaining symptoms and they are rarely resolved.

TSH110 profile image
TSH110 in reply to shaws

Yes it is really sinister.

jgelliss profile image
jgelliss

Thank You Diogenes . I couldn't read the article since it's in German language . But If they are saying if I understand that NDT has place in the thyroid journey . I'm very happy that NDT is getting it's recognition it deserves that our great great parents dosed with before T4 and synthetic T3 was discovered and doing *Great* with it and was/is a *life saver* even today for many thyroid patients.

shaws profile image
shawsAdministrator in reply to jgelliss

RedApple has translated the German into English - see above.

jgelliss profile image
jgelliss in reply to shaws

Very kind of you Shaws . Thank You .

humanbean profile image
humanbean

DTE is not approved by the Food and Drug Administration (FDA). Approval does not seem to be necessary since it was “grandfathered in.” (Substances on the market before new FDA approval rules were implemented do not need approval.) The consequence of this fact is that the FDA does not examine the content and quality of DTE. In the US and in most European countries DTE can only be purchased in pharmacies with a prescription.

One thing that annoys me enormously is that animal-derived insulin products are still available for diabetics and nobody bats an eyelid about it.

But take something from an animal thyroid and doctors go nuts.

If I wanted to kill myself with insulin it would be an absolute doddle to do so. It would actually be a lot harder to do so with NDT.

I am convinced that the attitudes are so different between the two partly for economic reasons, but mostly because the patient profile for thyroid disease is overwhelmingly female, whereas it is roughly 50/50 male/female for diabetes. And we all know that doctors think women are stupid attention-seekers.

TSH110 profile image
TSH110 in reply to humanbean

And a friend of mine had just become part man part pig he has the option of pig heart/aortic bits and bobs over synthetic with the added advantage that there is no need to take warfarin for life like you have to with synthetic parts. Why can they get pig this and that, but we are patronised and refused pig thyroid hormones despite it being used successfully far far far longer than Levothyroxine mono therapy. It beggars belief. The sexism observation holds good with heart surgery too 😬

shaws profile image
shawsAdministrator in reply to TSH110

It was removed due to their False Statements and despite Dr Lowe requesting a response to his Rebuttal every year for three years but they never did and, unfortunately, Dr Lowe had an accident and he died.

drlowe.com/thyroidscience/C...

TSH110 profile image
TSH110 in reply to shaws

A very sad business.

humanbean profile image
humanbean

Yes, I know. It's apparently okay for lots of people to suffer so that people who already have money can make obscene profits.

TSH110 profile image
TSH110

Oh yes he chose them over synthetic bits because of not having to take lifelong warfrin. He saw it as a no brainer. He’s not a vegetarian like me (bar the NDT now in my case) so suffers no guilt on the part of the poor piggies whereas I feel sad that Levothyroxine did not suit me and the poor pigs are dying to keep me alive. I was never offered T3 on NHS in fact it was never even mentioned - well there’s a surprise I was told I would just have to put up with never feeling well again. That was utter tosh - NDT righted me very rapidly! I have poor conversion DIO2 gene combination, so NHS were right in that their T4 mono therapy would never make me well again. But it is hardly a universal truth that one can never be well again, it is just their narrow minded, misguided interpretation of what thyroid patients should be limited to supposedly for their own good (sic). I’m sorry but I am a perfectly intelligent person who is quite able to decide what is good for me - I loathe being patronised like that.

TSH110 profile image
TSH110

It was it’s dark now but my sunny NDT disposition is shining through today 😂🤣😂

TSH110 profile image
TSH110

😂🤣😂 dead right!

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