A bit of encouraging information: This paper in... - Thyroid UK

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A bit of encouraging information

diogenes profile image
diogenesRemembering
10 Replies

This paper in the UK has examined the benefits or otherwise of using DTE (NDT) on patients who did not tolerate T4 only. It's encouraging to find substantial improvements to QoL in some such patients. It is accessible

Is there a role for Natural Desiccated Thyroid in the treatment of levothyroxine unresponsive hypothyroidism? Results from a Consecutive Case Series

October 2021 International Journal of Clinical Practice 75(12) 

DOI: 10.1111/ijcp.14967

Adrian H Heald,Lakdasa D K E Premawardhana, Peter Taylor, Dyfrig A Hughes.

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diogenes profile image
diogenes
Remembering
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helvella profile image
helvellaAdministratorThyroid UK

Full text here:

onlinelibrary.wiley.com/doi...

TSH110 profile image
TSH110

Thanks for posting a most welcome paper & I count myself as living proof that there is a role for NDT in the treatment of Levothyroxine unresponsive hypothyroidism. It got me back my life.

shaws profile image
shawsAdministrator in reply to TSH110

If you're in the UK I believe that those 'important' doctors' who removed NDTs from being prescribed were very wrong.

Natural Dessicated Thyroid hormones - when first introduced - saved lives from 1892 onwards and prevented awful deaths,

There was no need of blood tests and it was the clinical symptoms that were the priority for prescribing it.

NDTs also contain all of the hormones a health thyroid gland would have, so I believe it was a huge mistake by the experts who removed this safe thyroid hormone replacement.

They seem not to care about relieving the clinical symptoms and it is not 'one size fits all' and we should be permitted to trial 'options' if we're not improving.

Levothyroxine - also called T4 but the original replacement was NDTs made from animals' thyroid glands and contain all of the hormones a healthy thyroid gland would do. Why banish this product in the UK?

Big pharma wanted a portion of the profits and I assume levo was cheaper to produce - being T4 alone - but it is T3 that is the 'active thyroid hormone'.

TSH110 profile image
TSH110 in reply to shaws

Totally agree!

carorueil profile image
carorueil in reply to TSH110

Have to agree with you - I got my life back with it too!

DippyDame profile image
DippyDame

Significant symptomatic benefit and improvement in QOL was experienced by people with a history of levothyroxine unresponsive hypothyroidism treated with NDT, suggesting the need for further evaluation of NDT in this context.

Are they not reinventing the wheel!

Maybe I'm just being particularly dim/ cranky but I really don't know why there should be any surprise that QOL improves when LT4 is replaced by DTE (NDT).... if correct testing preceded the dose change and showed low(ish) FT3

Surely the problem is lack of ( cellular) T3 and adding some to the LT4, as in a T4/T3 combo, would suffice and could be more accurately titrated in response to the test result and the patient's needs.

Ah, but....they baulk at the mention of T3!

Yet ....they may consider NDT which may not provide the T4/T3 combination that the patient needs.

The results offer...

One person discontinued the NDT because of lack of response; two because of cardiac symptoms.

I wonder if this lack of response to NDT was caused by insufficient T3 in the combination and, if the cardiac symptoms were the consequence of too much T4 in the NDT dose for the patient's needa

Sorry ....but I despair at the number of people who are really struggling because medics don't seem able to adequately medicate them. Only today one member wrote

The GP was very open is stating that she was only interested in managing TSH levels and was uninterested in symptons.....and irritated at the mention of T3.

How on earth are thyroid patients going to improve when this abysmal level of understanding is what they receive from medics!!

Things need to change, but unless there are practitioners who have a good grasp of both thyroid disease and appropriate medication we as patients are going down like the Titanic when it struck an immovable force!!

I was one who nearly "drowned" because T3 was neither understood nor available.

Available NDT would undoubtedly help some patients but it still won't be enough to help those who need an individualed dose of T3.

There seems to be a lack of joined up thinking...

shaws profile image
shawsAdministrator in reply to DippyDame

I agree wholeheartedly with you and thanks to this forum that many people can be helped and given advice that the majority of 'experts' seem not to have.

DippyDame profile image
DippyDame in reply to shaws

Absolutely shaws....the collective knowledge on the forum is far beyond that of any medic and I for one will be eternally grateful for that.

shaws profile image
shawsAdministrator in reply to DippyDame

I agree wholeheartedly with you and those of us who've been very unwell and struggle to trial 'options' the relief we have when we finally are able to source/get prescribed what suits our bodies.

Doctors who would like to be endocrinologists would do well to join our forum so that they could have a big 'learning curve' and rely upon what 'a patient' states rather than read or be taught from people who do not have a dysfunctional thyroid gland.

BB001 profile image
BB001 in reply to DippyDame

Cardiac problems can be due to not enough T3 too, may be the NDT didn't contain enough T3 for those two patients that discontinued treatment with NDT. There's no mention of whether these patients' cardiac symptoms were resolved on returning to T4 treatment.

thyroidpatients.ca/2020/10/...

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