Outcome of Weetman-Dayan debate in Edinburgh

[diogenes]

Profs Weetman and Dayan had a debate about whether or not some patients benefit from T3 supplementation (Weetman against, Dayan for). This was in a Society for Endocrinology meeting in Edinburgh early this month. Has anyone any feedback or did anyone here attend?

[Marz]

endocrinology.org/meetings/...

Is this it ?

Sorry - that is just saying there will be an event

[humanbean]

I found these two links :

1) Colin Dayan's abstract : endocrine-abstracts.org/ea/...

2) Weetman's abstract : endocrine-abstracts.org/ea/...

The Weetman link made me laugh. Click it to find out why!

Links for the whole conference can be found here :

endocrine-abstracts.org/ea/...

Edit : Okay, me saying it made me laugh was a bit vague. The reason I said that is because Dayan allowed his abstract to be published. Weetman hasn't made his abstract available. This suggests to me that Weetman doesn't have the courage of his convictions and doesn't want to have a public spotlight put on his beliefs about T3.

[diogenes Remembering in reply to humanbean]

It left me scratching my head. Case of cold feet in front of the evidence? Note however how everyone in Shakespeare's words "creep like snail to school". Yes but - still persists.

[shaws Administrator in reply to humanbean]

I cannot access Weetman's or Colin's.

[humanbean in reply to shaws]

1) Do a google search for "endocrine abstracts 2015"

2) In the first result, click on Society for Endocrinology BES

3) Click on Society for Endocrinology BES 2015 - Volume 38

4) Scroll through the contents until you come to the word "Debate" in orange. The Dayan and Weetman links are just below it.

[shaws Administrator in reply to humanbean]

Thanks for your excellent instructions. I must admit it did take sometime but it would have been great to read the 'opposing' view. We love Dr Colin Dayan's humane reasoning.

[Hidden in reply to humanbean]

humanbean - link for Weetman saying abstract unavailable.

[humanbean in reply to Hidden]

Exactly! That is why I said it made me laugh. Dayan was prepared to have his abstract published. Weetman, apparently, didn't have the courage of his convictions.

[shaws Administrator in reply to humanbean]

He didn't want to be 'shot down' as so many of us who don't feel well on levo alone are saying we're so much better with the addition. Maybe he didn't like the 59+ comments made re his American Endo Conference. Somatization Disorder.

[humanbean in reply to shaws]

I've added an edit/an explanation as to why I said it made me laugh earlier. So hopefully people won't be confused again.

Yes, I agree, he may not want his beliefs about T3 put under the spotlight for the public - and other endocrinologists - to see.

I'm sure there must be some endocrinologists who understand some of the effects of T3 medication and what happens when the patient has too little. They can't ALL be totally dense, sadistic, and behind the times.

[shaws Administrator in reply to humanbean]

When I had T3 added to levo I improved a lot but when I was switched to Eltroxin instead of levo I was even better with this combination, so much so that when my appointment came round the Thyroid Nurse was astonished with me, my appearance and vitality. So am sure she would have told the Endo who was nervous about my blood test results that I decided to 'go it alone'.

[Hidden in reply to humanbean]

humanbean - thanks for explaining and sorry for being dim!

[SmallBlueThing]

There were a few tweets from attendees looking forward to it, with smug comments about the outcome e.g. from a biochemist: "Good talk at #SFEBES15 on hypothyroidism and the gaping evidence hole that is T4/T3 replacement and dubious deiodinase testing." and "Fun debate yesterday on (lack of) evidence for T3 use in hypothyroidism. Big majority of endocrinologists against it."

This "Endocrinologist and idler" teaches medical students: "Disappointing not to get to I(odine) talk, will be there for the T3 debate. Should be a bit of needle in that one."

Photographing slides was forbidden, but one (transcribed below) was sent from an Addenbrooke's endo to the idler endo, with comment: "Shows nothing new under the sun."

-----------------------------------------------------------------------------

1891 - George Murray described organothereapy in BMJ

- First myxoedema patient treated with sheep thyroid extract in glycerol and phenol s/c. A 46 year old woman was treated for 28 years until she died aged 74 having received thyroid extracts from equivalent of 870 sheep.

1892 - Described successful treatment of 3 further patients in BMJ (60th annual meeting of BMA)

- Temperature increase within days of treatment and progressive improvement

- Sudden death from "cardiac failure" in two of the cases

"Patients with weak or degenerated hearts may die suddenly after the improvement has taken place, from cardiac failure after exertion to which they have for long been unaccustomed."

-----------------------------------------------------------------------------

"Good one for #SFEBES15 attendees to discuss over coffee! High T4 / lower TSH linked to dementia."

Prof Anthony Hollenberg from the States is held in high esteem.

[humanbean in reply to SmallBlueThing]

If I understood all the banter correctly, then things are only going to get worse.

"Fun debate yesterday on (lack of) evidence for T3 use in hypothyroidism. Big majority of endocrinologists against it."

Obviously they know that patients want a choice, but they don't care. It's like they were giving a big V sign to us all.

[diogenes Remembering in reply to SmallBlueThing]

The peculiar thing about the "intellectual" (if I insult the term) rejection of T3 additional therapy in the UK is there is quite the opposite view in say Germany where appropriate T3 supplementation is perfectly well understood and allowed. The rubbish about the failure of T4/T3 supplementation trials simply emanates from the fact that the minority of subjects benefitting were swamped out by the majority who don't need T3 (and in some other minority cases I think are too sensitive to it). If you don't divide the patients into the right categories you won't get a result. Doing a proper trial is what we plan to do this coming year.

[helvella Administrator Thyroid UK in reply to SmallBlueThing]

Quoting cases from 1892 is hardly in any sense scientific or medical.

While interesting, and not to be forgotten, it hardly counts as evidence against T3. Did any of these worthy endos tweeting away actually examine those patients? Was it possible to rule out pre-existing serious heart issues, quite possibly caused by long-term hypothyroidism? And they nicely ignore the counter-example of the 870 sheep woman - if taking any T3 is so dangerous, it seems extraordinary that she could have lived so long. After all, we are not talking about nicely prepared exact doses.

[LindaC in reply to SmallBlueThing]

I live in the very city where George Murray was first treated... indeed some event or other was held last year in honour of that! Such a shame the endos within that teaching hospital ignore patients who have that 'undeniable look' of those within the many pics of >100 years ago: (I already had pics from Mark Starr's excellent book, so knew that I looked exactly like that). Then there are the winter temps and stumbling, lack of coordination even confusion, you know, those signs that have people worried about hedgehogs

Even when treated, my temps are still way too low... those same doctors - relying entirely on 'ranges' - to this day tell my that I am not and never was hypothyroid [diagnosed in Feb and May 2010 by two properly qualified doctors] after taking: Levo for weeks = could not tolerate; Armour 2 1/2 years = mostly very good; T3 alone = Dec 2012 to date. The signs/symptoms were undeniable... as I have said to the last endo, "Even to that proverbial optically challenged man on a galloping horse". One guy from that hospital used to sit on a committee with Monsieur a la Weetman... who maybe is 'just depressed' now himself because his 'pet theory' is crumbling?

[SmallBlueThing in reply to LindaC]

LindaC, it's the third winter for me of measured stage 3/4 hypertension, and my GP seems to be getting a <tiny> clue, suggesting a 25ug Levo increase after TSH has risen from 0.8 to 4.3 over the past 4 months. Cardiologist was clueless about low Vit D and increased incidence of heart attacks over winter. I'm a couple of days into trying 75ug Levo and 25ug T3 instead of 150ug Levo, and think I'm starting to see my kneecaps again and feel more positive (all placebo, of course). Still cold, but Artorvastatin made it feel much worse.

More from the "endocrinologist and idler":

"Thyroid lecturing at @QMULBartsTheLon this morning. There will be a picture of a lamprey with a hilarious caption."

(Let's hope it had nothing to do with "hagfish". ncbi.nlm.nih.gov/pubmed/155... )

"No matter what our whole specialty advises on the thyroid in press releases, we get pelters #T3 #armourthyroid"

"I used the BMJ thyroid extract paper from the 1890s in my lecture the other week, handed out copies, they loved it! Got a laugh as I read out the bit where success was defined as the female patient being able to scrub the floor again."

[LindaC in reply to SmallBlueThing]

Haha SmallBlueThing, humour is still the best medicine Yup big changes in some respects, these days we have husbands to scrub [the floor] instead Ah, that's the problem - now we're cosseted and lazy

Fortunately [maybe not!?] my BP is low IRO 100/60... but I've just realised that my heart rate goes up in winter [kind of scares me when using either NDT or T3 with an arrhythmia and leaky values]... when my temps go right down. Docs seem to have little clue about much in several fields these days; much better in some schools, horribly worse in others, i.e. Endocrinology [might be fine if you're T1D... whistle for the rest of us!].

Seriously, the pics in Mark Starr's Hypothyroidism Type 2... I have before pics, during pics and now (only recently) after pics... I could fit right in there with those lucky patients of yore.

Sorry but more #pelters needed... at very least we could be listened to; many of us are #notdepressed, #nothalf-witted, #notattentionseekers and, well, just plain tired of #£%*&$.

Take care and be well xx

[Hypopotamus]

Colin Dayan was the first endo that I was referred to (in 2000). When I told him that I was having a big problem with T4, he asked me what he could do. I asked for T3, and he let me have it. Although it wasn't the complete answer to my hypothyroidism, I was very sorry to see him leave the hospital to go to Bristol. I believe that he is one of the 'good guys', and certainly one of the few who listens to his patients.

[shaws Administrator in reply to Hypopotamus]

Is Dr Dayan unique in that he cares/listens to his patients? He must surely be very unique.

What about the poor woman who committed suicide a few weeks ago who could not carry on her life (was told on BBC Scotland by Lorraine Cleaver) who wrote a ten page letter detailing her thyroid history and treatment as the cause of her suicide and she could no longer continue to live.

[SmallBlueThing in reply to shaws]

A long trawl to find these tweets from 5th November.

"History before examination before biochemistry before imaging...

...careful, you'll give away our secrets!...

...ah but the devil is in the (biochemical) detail...

...except when they're hypothyroid and adequately replaced - then we ignore the history #controversial...

...ha, fair but nope, lots about this at #SFEBES15 - T4/T3 combo not justified...

...Ever? Despite the RCTs, most thyroidologists I've heard speak use combo at times.

..Interested as am contemplating entering such dark waters for a desperate patient."

End of conversation: the "idler endo" referred to earlier appears to have no interest in discussing desperate patients

Comments about another medical professional (not thyroid-treatment related):

"The way he went on the ultra-defensive suggests he doesn't have a clue."

"I think it's not whether the intention was to belittle; he didn't realise and that's as big a crime."

"It suggests a condescending attitude that has no place in a hospital."

A comment about social media:

"I often "prescribe" #SoMe but more often I just listen to patient stories of gr8 #peersupport"

[humanbean in reply to SmallBlueThing]

It's difficult to comment on those tweets out of context, and I don't have a twitter account to follow them up, but some of them are very disturbing despite the lack of context.

A couple of comments of my own in response :

...ah but the devil is in the (biochemical) detail...

They very, very rarely ever get biochemical detail, all they are interested in is TSH. I'd hardly call that "detail"!

...except when they're hypothyroid and adequately replaced - then we ignore the history #controversial...

This one just made my heart sink. How many people are struggling with a TSH of, say, 4.4 where the top of range is 4.5, and are told repeatedly that they are normal or adequately replace? Lots I would imagine.

"It suggests a condescending attitude that has no place in a hospital."

This one surprised me. Condescending attitudes are commonplace in hospitals.

[humanbean in reply to shaws]

You can see the 10-page letter here :

tpauk.com/forum/resources/j...

It was left by Jacqueline Falkowski to be found after her death and was addressed to Sheila Turner of TPA. Sheila didn't get it for months after Jacqueline's death because the letter ended up with the coroner first.

[shaws Administrator in reply to humanbean]

Thank you Humanbean for posting this link.

I have just read this wonderful Last Testament by a very brave woman. Her statement is beautifully written and her treatment and non-diagnosis is truly an abomination by all of the 'experts' and of the Guidelines we have at present.

It was very touching and sad to read all she's had to go through and am so sorry the only way to stop her suffering was to end her life. What a waste and it was all down to the demeaning experiences she's had with the medical profession and the diagnoses she was given by all of them. You can only weep for her and her family - no sympathy from elsewhere.

Do we live in a Modern Country with 'free' medical treatment? Only if you 'fit' into a certain criteria and many of us with a thyroid dysfunction find that many pour souls are in the same boat and nowhere to turn, particularly if they don't have access to the internet. Many are forced to source their own medication and get support/help from others who have been (or maybe still) in the same situation.

Another modern day tragedy.

[LindaC in reply to humanbean]

Yes, thank you humanbean - I heard about this amidst a scuffle on FB [pretty disgraceful stuff] - so now see the connections. It seems that anyone who has hypoth or other related thyroid conditions will have some clue of these issues. Tragically sad.

[waveylines]

Have only just seen this thread. I am so so sad To hear about Jackeline. What an absolute loss she is. It is such an awful example of how the medical profession has become obsessed about tests and protocol and in doing so has completely lost track of the most important thing -the patient, presentation, sign symptoms & effective treatment.

For all us patients who have struggled to get diagnosis and suffered the delay of treatment and or the long road to find /get the best treatment for us as individuals suffering this terrible condition it sadly rings resounding bells of recognition -I know it does for myself.

Though I'm currently on NDT and have the good grace to have prescribed on the NHS and have been on this type of treatment for a number of years, my surgery doctors regard it as 'funny meds' -such has the degree of annilisation that has taken place of the many years of good practise occurring before the event of TSH /levothyroxine and the proproganda that has spouted forth ever since.

The nonsense is so extreme that It has formed its own mental madness in a so called profession that truly takes my breath away. The irony of a profession mad illogical persistence to deliver a diagnosis of mental illness on patients who fail to conform to the strict gold standard rather then recognise their own professional failure is not lost on me. And as with many extreme forms of mental illness the patient is unable to recognise its own illness -which could be so aptly applied to this so called professional group. So madness breeds more madness. How this can be broken in to I do not know but until it is I for one am extremely grateful to forums like this one who remind me I the patient am NOT the mad one.

May Jackeline rest in peace and I pray her loss is not in vain.

[LindaC]

Thank you j-bee, you have just liked a comment of mine above - does it show up to you as a 'Like box' that is working?

What a carry on