By accident I came across this (openly available) paper on patient experiences with NDT v FT4. I thought it interesting enough to post here:
Patient Experiences and Perceptions Associated with the Use of Desiccated Thyroid Extract
April 2020 Medicina (Kaunas, Lithuania) 56(4):161
DOI: 10.3390/medicina56040161
Freddy Toloza, Nataly R. Espinoza Suarez, Omar El Kawkgi, Juan P Brito
It is from Lithuania which makes it a bit obscure but well worthwhile
[ Admin added link. ]
Good find 
diogenes 'It is from Lithuania which makes it a bit obscure but well worthwhile'
Thank you for this, it most certainly is worthwhile. I've pasted the abstract below for everyone to read. The full paper is available to all here mdpi.com/1010-660X/56/4/161...
Abstract
Background and objectives: It is unclear why many patients with hypothyroidism prefer the use of desiccated thyroid extract (DTE) as a thyroid hormone replacement formulation over levothyroxine (LT4) treatment, as recommended by clinical practice guidelines. We analyzed patient-reported information from patient online forums to better understand patient preferences for and attitudes toward the use of DTE to treat hypothyroidism.
Materials and Methods: We conducted a mixed-methods study by evaluating the content of online posts from three popular hypothyroidism forums from patients currently taking DTE (n = 673). From these posts, we extracted descriptive information on patient demographics and clinical characteristics and qualitatively analyzed posts’ content to explore patient perceptions on DTE and other therapies further.
Results: Nearly half (46%) of the patients reported that a clinician initially drove their interest in trying DTE. Patients described many reasons for switching from a previous therapeutic approach to DTE, including lack of improvement in hypothyroidism-related symptoms (58%) and the development of side effects (22%). The majority of patients described DTE as moderately to majorly effective overall (81%) and more effective than the previous therapy (77%). The most frequently described benefits associated with DTE use were an improvement in symptoms (56%) and a change in overall well-being (34%). One-fifth of patients described side effects related to the use of DTE. Qualitative analysis of posts’ content supported these findings and raised additional issues around the need for individualizing therapy approaches for hypothyroidism (e.g., a sense of each patient has different needs), as well as difficulties obtaining DTE (e.g., issues with pharmacy availability).
Conclusions: Lack of individualized treatment and a feeling of not been listened to were recurrent themes among DTE users. A subset of patients may prefer DTE to LT4 for many reasons, including perceived better effectiveness and improved overall well-being, despite the risks associated with DTE.
Useful, if only the right people were to listen!
"Lack of individualized treatment and a feeling of not been listened to were recurrent themes among DTE users"
This ( though not referred to in this paper- sorry!) can also be said about T3 only users....and thyroid patients in general!
I recently tried to explain why I need a large dose of T3......"head" and "brick wall" come to mind!
I thought one of the roles of a medic is to listen to the patient!
Not so, it seems, when the medic takes an entrenched stance, and raises their voice to make their point...or, I suspect, has little knowledge of the subject! I quietly gave up!
This cynic feels we still have a long road to travel....
The authors are from the US. I wonder why they chose to publish in Lithuania.
(This article belongs to the Special Issue Thyroid Disorders: Pathogenesis, Diagnosis, Impact on Health and Therapies)
I think perhaps it is their 'contribution' to the above special issue of the Medicina Journal, rather than that they chose to publish in Lithuania
We searched the ten most popular patient forums, based on the number of users (WebMD, Topix, Health questions, PatientsLikeMe, Drugs.com, Endocrine Web, Everyday Health, Talk Health Partnership, Spark People, and Patients.info), using the following key terms: desiccated thyroid extract, desiccated thyroid treatment, Armour Thyroid or Nature Thyroid (commercial names of DTE), thyroid extract, and hypothyroidism.
I've often been puzzled by the determination of doctors and researchers to use the term DTE (Dessicated Thyroid Extract) while completely ignoring the name NDT (Natural Dessicated Thyroid). If you are looking for posts on a forum written by patients that give evidence of how well a patient feels on a particular thyroid treatment why not use the term that the patient uses?
I know this is a controversial point., but I've been told the reason why NDT became DTE is that in DTE a small amount of T4/3 is added to fully control the content. No more than a very small % if needed. Natural Desiccated Thyroid extract thus can't be used as a name because of this small addition of synthetic hormone(s). I've never had any information on this from manufacturers, but anyone interested might contact them to find out if it is so.
Thanks, diogenes. It makes sense in research terms, but since the researchers were using patient posts as their source of info it seems a bit snobbish (?) not to search for NDT in those forums in the context of this paper. They may have been excluding large numbers of posts that could have contained useful info because the patients didn't use the proper term.
On the basis of nothing at all - just an invalid assumption, I had always assumed that NDT was the newer term and DTE was the older one. I got that one wrong.
Surely we should be told if NDT has a small amount of T4/T3 added. I am beginning to wonder if this is why Armour Thyroid seems to affect me the same as Levothyroxine. After being fairly good on WP Thyroid for a couple of years now, I am peeved to have to use Armour now.
RLC Labs, who produce Nature-Thyroid and WP Thyroid, claim that both their products are 'natural hypothyroid medication'.
And that they are made using 'Thyroid USP, which is standardised for both T4 and T3 hormones,'
So, if synthetic T4 and/or T3 is used in the standardisation, it must presumably be done at the Thyroid USP production stage?
In which case, how can RLC Labs call their products 'natural'? getrealthyroid.com
I'm quite sure the vast majority of endos at least, know exactly what you're talking about if you mention DTE, but they usually prefer to feign ignorance or at best imply that it's not 'proper thyroid medicine'.
Hey there Scrumbler
Who is this guy Hennessey - what a ridiculous statement to have gone to print with his name on : I hope he eats his words several times over - while I head for the Hennessey bottle of brandy - maybe this guy's left his brains at the bottom of the bottle - I'll take a look ;
P.S. I don't drink anymore - but reading statements like this makes me want something - it could be a punch bag but I'll settle on a cup of tea.
The term 'voodoo medicine' was once used by a private endo to me. 
Neither....scream from the rooftops.Santa might hear.....he seems to have magic powers!
We could do with either magic or a miracle....
And Christmas , apparently, is the time for both!
He is a bit stupid. When our body is struggling due to not having sufficient T3 (either converted from levo or too low a T3/T4 dose ) our body welcomes it as it gives us life when everything in our body isn't now struggling for the want of T3 and is he aware that our body has T3 receptor cells.
He states “We just don’t have the data yet to change my mind that adding T3 to T4 actually results in a superior product,”
So, if he is supposed to be an expert and doesn't understand the function of thyroid hormones, he should change profession, otherwise his hypo patients will not be improving if he sticks to the protocol he's using.
The following is one I think states everything he should know but doesn't:-
thyroidpatients.ca/2019/12/...
Excerpt:
"However, most doctors are not taught about our cells’ and tissues’ high priority for and dependence upon circulating T3, nor are they taught about the largest factor that can reduce T4’s local variable conversion rate to T3, nor are they taught about the direct correspondence between Free T3 levels and T3 nuclear occupancy rate, which determines hypothyroid or euthyroid status both locally and globally in the body.
The body’s dependence on a baseline of healthy circulating T3 is a principle that Antonio Bianco has emphasized in numerous publications.
I've read the whole of that Hennessy article. It made my blood boil from close to the start.
Is he stupid or what? T3 acts pretty much instantly. A 5 year old could understand the concept of thyroid hormone. I wish all these sort of people got hypothyroidism. I really do.
Sadly he's far from alone as most of us here have learned from bitter experience.
Vive la (thyroid) révolution!!
Patient information leaflets (PILs)World Patient Safety DayBritish Thyroid Foundation - Patient information event - Thyroid Guidelines UpdateLiver Injury Induced by Levothyroxine in a Patient with Primary HypothyroidismExamining the Diagnosis and Treatment Experiences of People Living With Autoimmune Gastritis and Pernicious Anemia
