Another helping of valuable? comment: This paper... - Thyroid UK

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Another helping of valuable? comment

diogenes profile image

This paper discusses the possible reasons for dissatisfaction on T4 only treatment. However I would let the kettle boil rather than your blood, when reading it.

The enigma of persistent symptoms in hypothyroid patients treated with levothyroxine: A narrative review

Petros Perros, Christina Van Der Feltz-Cornelis, Enrico Papini, Endre V. Nagy, Anthony P. Weetman, Laszlo Hegedüs

First published: 30 March 2021 doi.org/10.1111/cen.14473

Abstract

A significant minority of patients with hypothyroidism report persistent symptoms despite achieving normal thyroid biochemistry after levothyroxine (L-T4) replacement. Four principal lines of thinking, which are not mutually exclusive, may explain this enigma. The ‘low tissue liothyronine hypothesis’ emphasizes the potential imperfections of L-T4 replacement therapy that may lead to hypothyroidism in some tissues such as the brain, while others (eg hypothalamus) are euthyroid. The ‘Somatic Symptom and Related Disorders hypothesis’ draws attention to an incidental coexistence of a diagnosis of Somatic Symptom and Related Disorders in patients with treated hypothyroidism. The ‘autoimmune neuroinflammation hypothesis’ highlights the potential consequences of inflammatory mediators due to thyroid autoimmunity (the commonest cause of hypothyroidism) on the brain. The ‘comorbidities and psychosocial hypothesis’ implicates a variety of physical and psychosocial factors that have been noted to be associated with a diagnosis of hypothyroidism, which may be primarily the cause of persistent complaints. Over the past twenty years, a great deal of time and effort has been expended pursuing the ‘low tissue liothyronine hypothesis’, which has failed to yield results that translate to patient benefits. This has skewed the balance in clinical practice, in favour of pursuing answers relating to L-T4 and liothyronine combination treatment, while the alternative explanations have been downplayed and potentially useful interventions have been given insufficient attention.

53 Replies
helvella profile image
helvellaAdministrator

I thought Weetman had disappeared (e.g. retired)?

Too much to hope for.

TSH110 profile image
TSH110 in reply to helvella

Pity retirement can’t be enforced anymore ….

SlowDragon profile image
SlowDragonAdministrator

Inevitable Weetman’s name would be on there

Interventions using L-T4+L-T3 have been disappointing and are unlikely to unlock the persistent symptom enigma for the majority of patients; therefore, other avenues need to be explored. CBT, lifestyle changes, better management of patient expectations, provision of good quality information and psychiatric consultation to support the endocrinologist or general practitioner in delivering optimal care are interventions that merit further study.

Just glanced through this but reading the above was enough!

Robust research, open minds and ears and a bucketful of humility is what we need here.... not this drivel.

I'm neither medically trained nor an academic, just one of many patients struggling with thyroid disease who was wrongly diagnosed and medicated for decades. I had to try and find the answers that the medical profession could not provide. Had the disease addled my brain? One GP clearly thought so when I told her that I was about to start "digging".

I started reading.

Now, my question is - when will cellular hypothyroidism/ thyroid hormone resistance in various forms, be given the recognition and research it deserves?

Patients are suffering due to the lack of apposite "good quality information" and as a result of the lack of medics able to treat this area of hypothyroidism

Without high dose T3 I may now dead...or close to it! My body felt as if it was slowly shutting down.

Thank you TUK!

Ah! ...but this Paper suggests that a trip to a psychiatrist may have helped me. And, that CBT might have made me understand that my wild idea, that a supraphysiological dose of T3 might be the answer, was inaccurate and negative.

It absolutely does makes my blood boil!

tattybogle profile image
tattybogle in reply to DippyDame

It absolutely does makes my blood boil! Gosh , you really should see somebody about that DippyD .. perhaps once you've had some help to address your clearly unrealistic 'patient expectations' ( .... to be taken seriously, to have a reasonable level of health, and to have a GP with a brain, who gives a shit !).. you will feel much better .

I'm not sure i want to read it .... since it's sunday, and i used to go to church in my youth..... can i claim a religious exemption from reading malicious, ill informed, codswallop written by Philistines on a Sunday ?

RedApple profile image
RedAppleAdministrator in reply to tattybogle

tattybogle, 'malicious, ill informed, codswallop written by Philistines on a Sunday ?'

Nope, paper dated 30 March 2021 which was a Tuesday, not a Sunday 🤣

tattybogle profile image
tattybogle in reply to RedApple

Ha ha ... i 'm a sucker for punishment, so i've already started. What do they mean "there's only 4 reasons "

What about:

5 ) THEY might have some of the basic principles of TSH wrong.

6) some people don't seem to tolerate various brands of Levo or frequent switching between them .

7) willfull Gaslighting of patients for decades is highly likely to lead to them being 'dissatisfied'

8) .....

9).......

10) ...... THEY do not have an open or curious mind , so haven't actually listened to any patients , or read any current research .

TSH110 profile image
TSH110 in reply to tattybogle

👏🏽👏🏽👏🏽

TSH110 profile image
TSH110 in reply to RedApple

LOL eagle eyes or what? 🤣🤣🤣 I say Tuesday is the new Sunday 😉

DippyDame profile image
DippyDame in reply to tattybogle

Phew! It has returned to body temperature!

diogenes did warn us, but I forgot to switch on the kettle!! However I would let the kettle boil rather than your blood, when reading it.

Problem is the steam from boiling blood fogs up my specs then my brain goes to sleep!

TSH110 profile image
TSH110 in reply to DippyDame

I have mentally boiled their heads - I found it quite cathartic

TSH110 profile image
TSH110 in reply to tattybogle

Yes they tried “managing my expectations” too - I was told “You’ll just have to get used to feeling ill all the time” it was a load of old baloney.. NDT sorted it all out - thank god for this forum

Would love an audience with these guys to ask them to explain how they would explain the huge improvement in my quality of life since taking T3 since may 2016. However I doubt anything I could say would make a difference to such bias.

Its the placebo effect......................Patient gets frustrated at not being listened to...................

Diagnosis.............Somatic syndrome & related disorders..................

I'm sure I've seen this scenario in horror films.

TSH110 profile image
TSH110 in reply to Musicmonkey

Your imagining it just like me and a hundred thousand others….it’s the placebo effect. 🙄

helvella profile image
helvellaAdministrator

If the cost of T3 were where it should be, and a wider range of dosages available, it would likely be less expensive to try combination treatments than pursue the non-T3 approaches.

tattybogle profile image
tattybogle in reply to helvella

skewed the balance in clinical practice, in favour of pursuing answers relating to L-T4 and liothyronine combination treatment, ...... while the alternative explanations have been downplayed and potentially useful interventions have been given insufficient attention.

Is it just me ? i really haven't found it to be the case that GP's are giving insufficient attention to alternative explanations ..... it's all they seem to do .... "your hypothyroidism is treated now , so it's 'something else' "..... Explore 'health anxiety' , Offer CBT/ SSRI/ Refer to random specialist in full expectation of 'Nothing Abnormal Discovered' just to get rid of you.

Unless of course ,they are suggesting that loads of research is urgently needed to investigate " The ‘autoimmune neuroinflammation hypothesis’ highlights the potential consequences of inflammatory mediators due to thyroid autoimmunity on the brain" ...... but i think we all know that's not where a paper from these writers is headed, since both their other suggested options are firmly in the 'psychology' camp.

helvella profile image
helvellaAdministrator in reply to tattybogle

I wonder if even a single member has found one of the non-T3 options (whether one of those listed or any others) has actually explained and resolved ongoing issues?

(Though it is important to also consider iron, B12, etc., which seem to end up with a negative synergy when they occur in hypothyroidism.)

tattybogle profile image
tattybogle in reply to helvella

Has any of the 'non T3' options helped. ?... well .. in a kind of sick farce ..yes, it has . as long as i didn't realise i'd been the subject of gaslighting, then I found talking therapy quite helpful in dealing with the low self esteem and lack of confidence ..... caused by the gaslighting :)

...obviously it did bugger all to improve the treatment or understanding of my thyroid disease .

nellie237 profile image
nellie237 in reply to helvella

Fair question helvella, but...... The over-riding topic of this paper is that All options/treatments lead to Somatic syndrome & related disorders don't they?

We're all raving hypochondriacs, and need to be dumbed down with not only anti-depressants, but anti-psychotics too. That'll keep us so zombified that we won't feel the need to ever visit a GP again, let alone notice that we really don't feel well.

..........having a heart attack.......Nah, I'm OK.

The whole thing reads like something out of the era when they used to be able to lock women in the asylum willy-nilly, as well as a desperate attempt by the authors to still be seen as viable, when they've really gone so over-board that they look ridiculous.

TSH110 profile image
TSH110 in reply to nellie237

It’s having a womb and all that hysteria - these people have a medieval mentality pity we can’t lock them up and stop them promulgating this clap trap

TSH110 profile image
TSH110 in reply to helvella

Two years of suffering, loosing my job/career, being almost brain dead, suicidal ideation etc etc I think Wheetman et al would call that a ”result” 😠😡🤬

TSH110 profile image
TSH110 in reply to helvella

They could let us have our “placebo” couldn’t they!

Well, with Weetman on the list, what else would you expect.

Oh , i see what they're up to . They realised we now know what is meant by by 'MUS' and 'somatoform' ( neurotic / in your head )

So they are now promoting 'SSRD' instead . (new label describing people who present with "distress" about physical symptoms AND who also have a diagnosed condition eg . hypothyroid)

For the purposes of 'getting rid of the patient quickly and effectively' an SSRD 'diagnosis' is an improvement on MUS , which they do struggle to pin on us if we have a diagnosed physical condition with many nonspecific symptoms such as hypothyroidism.

And at the same time, they are setting up some more 'evidence' to refer to, suggesting that CBT can be a useful "treatment" for hypothyroid patients, .. i imagine they are very annoyed CBT is no longer called a 'treatment ' in the new CFS/ME guidelines .

2.2 The ‘Somatic Symptom and Related Disorders Hypothesis’

"Patients responded well to an intervention [CBT] focusing on exploration and explanation of the physical symptoms and the proposal of a treatment plan taking biological aspects and psychiatric comorbidity into account. In that study, 4.9% of the patients suffered from hypothyroidism, which suggests that such an intervention might be a useful treatment model for persistent symptoms in both overt and subclinical hypothyroidism.54 It can secure a classification of SSRD and support the general practitioner or endocrinologist providing treatment.

nellie237 profile image
nellie237 in reply to tattybogle

I had to look up MUS,,,,,,,,,Misc Unspecified Symptoms. Ha, ha, I've got quite a few of those.

There's another one. Functional Neurological Symptoms. Bristol NHS:

"This problem has been around for a long time, for most of history it was called “hysteria”

helvella profile image
helvellaAdministrator in reply to nellie237

I think it is more often interpreted as Medically Unexplained Symptoms:

networks.nhs.uk/nhs-network...

nellie237 profile image
nellie237 in reply to helvella

🤣🤣🤣 My brain did that change just in the time it took to switch tabs..........there is no hope.

tattybogle profile image
tattybogle in reply to nellie237

Yes as helvella says ~ Medically Unexplained Symptoms ( no medical explanation , therefore it's in yer head)

nellie237 profile image
nellie237 in reply to tattybogle

"therefore it's in yer head" Yeah, I got that bit...........then I lost it. 🤦‍♀️

tattybogle profile image
tattybogle in reply to nellie237

ah.... then you have BLS not MUS

( brain like sieve)

is that how you spell sieve .. seive .... oh bugger it "colander"

nellie237 profile image
nellie237 in reply to tattybogle

I've always had BLS,...........Read a really good book, put it down..........tell you what it was about.....not a hope in hell.

same for me. TV programmes and films too 😥

Yep those too.

TSH110 profile image
TSH110 in reply to Musicmonkey

I have to watch them 3 times in fairly close succession to remember anything of substance! I usually know on the second view, I have seen it before because I have a recollection of the odd bit here and there. When I was a youth I could remember every last detail 1st time around 🙄

TSH110 profile image
TSH110 in reply to tattybogle

It starts out like a sieve and ends up like a collander as the holes get bigger….and more things fall out

TSH110 profile image
TSH110 in reply to tattybogle

Odd how T3 gets rid of them…,

TSH110 profile image
TSH110 in reply to tattybogle

Descartes has a lot to answer for too.

TSH110 profile image
TSH110 in reply to tattybogle

No one can get CBT anyway - I waited two years abs I can’t imagine it’s any faster now. It’s not appropriate for hypothyroidism that isn't being correctly managed. Glad it’s being abandoned for CFS/ME

nellie237 profile image
nellie237 in reply to TSH110

I think mental health workers are more elusive than GP's these days. Shop workers are still out there though. I've got a lot of respect and gratitude for all the supermarket staff working throughout Covid.

TSH110 profile image
TSH110 in reply to nellie237

Me too - where would we be without them? In a heck of a huge mess.

diogenes profile image
diogenes in reply to tattybogle

Perhaps they might add PO to the list - plumbum oscillans! This was used to be in GP's sarcastic notes on who they thought were doing it.

tattybogle profile image
tattybogle in reply to diogenes

and they might get away with it, now they don't teach kids any Latin . I didn't learn much, but it's very useful for guessing meanings of medical words.

Garbage in, garbage out.

TSH110 profile image
TSH110 in reply to Hillwoman

Succinctly put!

Noticed Weetman’s name and knew it would be rubbish… The man suffers from persistent somatic delusions of grandeur!

TSH110 profile image
TSH110 in reply to Zephyrbear

🤣🤣🤣I dread to think that it might be like to be inside his head - a huge grotesque fantasy fairground floating in a sewer full of 💩

I’m sorry but I’m living proof combination therapy has sorted out my supposedly “imagined” persistent hypothyroid symptoms on Levothyroxine monotherapy. When will these idiots stop pontificating and spouting their baseless 💩 and start listening to their patients? They can go boil their heads and see if CBT sorts out their burns or take some antidepressants as any burns they believe they might have are merely a figment of their imagination

Zephyrbear profile image
Zephyrbear in reply to TSH110

So am I!!! Why don't they ever ask me???

Ah.... but , they have cleverly ruled out the need to include the experiences of anyone who thinks they got better. "You see my dears , (pat on head ).... you've been poking around on that dangerous internet, trying to understand thing's that are too big for a simple patients brain ,and you've got sucked into evil thyroid forums where you have been radicalised and fed misinformation by other deluded people ...... so your mistaken belief that your symptoms have improved is just because of the extreme difficulty you had in finding out about and getting hold of T3 .... and this has made you all the more determined to convince yourself that you feel better with it."

It's briilliant .....either your symptoms were not really there , because you only created them after you read about them on the internet .

or.... they were really there , and you're not actually better , you just think you are because you've been brainwashed by an internet clique who told you T3 would fix everything.

Catch 22 .

But don't worry , they 're working on a plan to fix this irritating issue of 'patients talking to each other on line' .. they mention 'better information and communication' a lot in this paper .. so i'm sure they are working on some really informative leaflets setting out their very best facts about TSH in short words / large print for patients to read, and will soon be writing more papers for GP's telling them how to do a better job of pretending to listen to you.

Musicmonkey profile image
Musicmonkey in reply to TSH110

Yes, combination therapy stopped me napping daily and gaining weight and being tearful and miserable.

Thanks again diogenes 😊👍

The ‘comorbidities and psychosocial hypothesis’ implicates a variety of physical and psychosocial factors that have been noted to be associated with a diagnosis of hypothyroidism, which may be primarily the cause of persistent complaints.

I’m only on Levothyroxine and NOW doing well. I took advice from forum- pretty much ignored GPs, arguing successfully for each increase to full replacement dose and now feel well (much to their chagrin) ………But I was persistently complaining when the idiots tried to under medicate me…..

I knew just from the anecdotal evidence on the many posts I read, the longer they mucked about with my treatment the lesser the chances of getting well.

The main psychosocial factor I can identify in the perpetuation of symptoms, is allowing ourselves to be treated by ignoramus’ who masquerade as experts, refusing to acknowledge how the patient feels should be prioritised over lab work.

You have no idea how hard that was to write without littering with expletives! LOL!

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