Interesting read on evidence for need for research on Liothyronine

[Buttercupsareyellow]

Hope this works, for anyone interested a research work accepted for publication this week advocating the evidence for research on Liothyronine

research.bangor.ac.uk/porta...

[fuchsia-pink]

I've only skimmed it so far. It's a very small sample but the QALY (incremental cost per quality-adjusted life year) - the financial measure the NHS uses to assess medicines is low - and would be far far lower if the NHS stopped over-paying so much for lio in the first place.

I'm a bit concerned by the conclusions, though:

Conclusions: A definitive clinical trial to confirm clinical effectiveness may be preferable to immediate disinvestment, and would be justified given the value of the information gained far exceeds the cost.

(a) the use of the word "may"

(b) the very suggestion of "immediate disinvestment" for a medicine that is acknowledged to be pretty cheap (relatively) and

(c) the actual concept of a clinical trial - because for the majority who do fine on levo-only, it will show no real benefit (which doesn't help those who do need it) and for those of us who have found lio to be brilliant, I for one wouldn't want to be part of the "control" and have my lio taken away.

You wouldn't do a "clinical trial" for broken legs by putting un-broken legs in casts for ages, or having people with a real broken leg not having it treated properly, so there must be an alternative that gives the medical world the data they need!

[Buttercupsareyellow in reply to fuchsia-pink]

Very true! I think it’s the context. As it’s a university based paper they tend to use lots of language like may , but they are effectively saying pull your finger out and do a trial (if I read it right). The joys of academic writing 🤣

[waveylines]

I had a quick read and it does seem more obsessed with cost then effective treatment. Honestly after all these years of being in clinical use to great effect why is its use being questioned? Or have I misread? I didnt read the paper in full.

[Buttercupsareyellow in reply to waveylines]

I agree. I wonder however if they are using that as evidence to help justify the need for something we all know anyway. Again speaking the language 🤷‍♀️

[SlowDragon Administrator]

Starting at line 350

This was worth noting

Many report dissatisfaction with treatment and experience symptoms consistent with overt hypothyroidism, including fatigue, memory problems, cognitive dysfunction, feeling cold and weight gain [3,35].

Our survey indicated their mean utility value is 0.53 which makes these individuals comparable in terms of their health status, to patients with lung cancer, or acute cerebrovascular disease and would rank in the bottom decile of 100 chronic diseases [36].

The economic analysis suggests that liothyronine/levothyroxine combination therapy may represent a cost-effective treatment option for patients who remain symptomatic with levothyroxine alone despite achieving free T4 and TSH concentrations within the reference ranges.

[waveylines in reply to SlowDragon]

Thanks SlowDragon....clearly I didnt read it thoroughly enough! Think I'm so used to all the negatives that have become standard fodder for years that I expected it to be negative! It still shocking this need to justify the use of a hormone replacement thats been used for years to great effect. Having said that if it finally starts to open the door to a treatment that has become so incredibly restricted then maybe change can finally occur. 🤞🤞

[helvella Administrator Thyroid UK]

Thank you for that - hope a published version is soon available - reading double-spaced with line numbers is a pin!

The paper ends with:

In the case of liothyronine, our analysis suggests that while it might represent a cost-effective treatment option for patients who remain symptomatic with levothyroxine alone, a definitive clinical trial is necessary to confirm clinical effectiveness. This would be justified on the basis that the value of the information gained far exceeds the cost of a trial.

I think this statement underlies the argument. Just how can "they" dismiss liothyronine while at the same time not running such a trial?

On the one hand, if they were to prove that liothyronine should never be prescribed, they would justify significant savings.

On the other hand, if they were to prove that at least some need liothyronine, then they emphasise the need to address cost issues. Which are hardly technically complex. "Buy Thybon Henning from Germany" would appear a suitably simply way of saving most of the cost.

On the mythical third hand, liothyronine is also used in relation to depression and thyroid cancer treatment, as well as Resistance to Thyroid Hormone. So it needs to remain available for those purposes even if withdrawn from "ordinary" hypothyroidism. Therefore, there is every reason to do something sensible about costs regardless.

Alongside all of this, we hear Peter Taylor and Antonio Bianco (and others) pushing forward with alternative liothyronine-type products such as polyzinc-liothyronine. They do not need to be convinced that liothyronine has to be available into the future.

[pennyannie]

Thank you :

I generally just scroll down to " conclusion " in all these research papers :

It seems to me it's all about justifying their existence and importance in conducting these trials and having their names in print.

Whilst we are the ones " crippled " with the symptoms get on with self medicating at our own cost as we are the evidence, walking around and getting on with our lives as we need to survive in the meantime, whilst the medics ----- about drawing conclusions.

[Buttercupsareyellow in reply to pennyannie]

Sadly true! I just hope anything promoting research is a positive…..🤞🏻🤞🏻🤞🏻

[pennyannie in reply to Buttercupsareyellow]

Well let us hope so -

But it seems to me that the more I learn the less inclined I am to put myself forward or even go the doctor for anything.

[DippyDame in reply to pennyannie]

Totally agree pennyannie

[diogenes Remembering]

The basic problem with this article is that the need for T3 with some people has been studied and the mechanism as to why patients need T3 has been copiously published by our team and others but utterly ignored in this paper. This paper is a very good example of the huge unbridged (-able) intellectual gap between basic thyroid diagnostic methods and the physiology that explains the basic difference between health and thyroid loss as regards the relationship between TSH, FT4 and FT3. Normal TSH as in health is still doggedly misused as a sign of adequate treatment on T4 or combination, which we know is incorrect (0.03-0.5 has been quoted as the T4-treated healthy range). Also of course we have the act of categorisation as a sign of satisfactory treatment (that is the patient is in or out of range and thus diagnosed as OK or not) rather than individual assessment regardless of biochemical values to begin with. It treats T3 use mainly in terms of cost/value and exaggerates problems (eg TSH might be changed momentarily with T3 take-up - as if that mattered). The paper is a startlingly clear example of basic ignorance of the real situation by those who are limited in their knowledge and appear not to have the intellectual ability to understand but the power to forbid or limit.

[DippyDame in reply to diogenes]

Hear hear!

[DippyDame]

That's Health Economics...and another rant from me!!

In the case of liothyronine, understanding the cost of everything (to the NHS) and the value of nothing ( to the patient)

The cart before the horse...

However, they do manage to partly unscramble their ideas by stating the obvious in their conclusions, "A definitive clinical trial to confirm clinical effectiveness may be preferable to immediate disinvestment, and would be justified given the value of the information gained far exceeds the cost."

But, they fall flat on their faces with the use of the word "may".

Do they have any knowledge of what they are struggling to express...or are they just trying to jump on the T3/cost bandwagon? Tick...another paper written!

The current lack of knowledge amongst the medical profession, and the scare mongering surrounding it has resulted in much of the current debacle causing huge problems for patients. The cost has been allowed to reach eye watering levels...and patients have suffered!

The debate goes on...

Prescribing by cost not by clinical need.

There is plenty of evidence to support the (correct) use of T3 - "Diogenes" et al for an excellent start - but until the medical profession open their eyes and ears and come off their high horses little will change and endocrinologists will continue refusing to prescribe this vital hormone.

Those of us with cellular, rather than glandular, hypothyroidism need T3 to function. For those in this cohort the cost of T3, and therefore it's lack of availability to us on prescription, could, one way or another, eventually kill us.

Levothyroxine is not the panacea of all thyroid ills!

Is there any other life threatening disease that is treated in such an off hand and uncaring way, often leaving patients to search the world for the treatment they need, not knowing if the sources are reliable and trustworthy. And, to self medicate on an often lonely journey without the support and safety blanket of the NHS that they deserve.

"First do no harm" has become " how much does it cost?".

Cost is clearly important but, significantly, so is poor money ( and clinical) management...can those holding the NHS purse strings honestly say that the treatment meted out to those in need of T3 ( some needing supraphysiological doses)is based on clinical need rather than on economics?

The cost of prescribing multiple medications and of treatments and of scans to investigate symptoms primarily caused by low T3, is money down the drain, when instead those costs could be eliminated and those symptoms could be resolved straight away by treating the cause, not the effect....low T3!

Research into that area might be enlightening!

The cost of T3 must be reduced and understanding of T3 must be raised....only then will the current mess be resolved!

[pennyannie in reply to DippyDame]

How do such " eminent endocrinologist and medics " manage this " U " turn, if at all interested in the answers, while still drawing a salary from the NHS ?

I have put in 40 years of NHS contributions, and drew out a small pension at 58 to tick me over to 60 after RAI thyroid ablation for Graves Disease, and left on monotherapy T4 and referred to as a conundrum by the people I trusted had my best interests at heart.

Stress and anger aren't good for me, nor was the lack of any treatment option offered.

The aftercare and being monitored and dosed on a TSH blood test once a year is seen as appropriate and the offer of HRT and or anti depressants readily available when I questioned my continued ill health on T4 monotherapy.

[DippyDame in reply to pennyannie]

Exactly!

It took me around 50 years to discover why my health had slowly deteriorated to the point where I could barely function!

Medics flew by the seats of their expensive pants to suggest a cause, but hit walls. After nearly 30 years, in desperation, I requested a thyroid test which the GP reluctantly carried out...it showed hypothyroidism.

For the next 20 years I struggled on varying doses of levo until I noticed a link to this forum on an NHS page. The rest is in my profile.

I now know that I have ( most likely since birth) a form of thyroid hormone resistance/ cellular hypothyroidism and need a huge dose of T3 which the only endo I saw insisted I did not need. I walked out... I self medicate and cope not only with low T3 but with the consequences of the damage caused by decades of deficiency.

The whole rotten system of thyroid treatment makes me see red!!

Thankfully there is also wonderful work done by the NHS... so it's not all rotten!

Ranting is good for stress and anger!!

Take care

DD