Shocking Video from Prof Karim Meeran - Thyroid UK

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Shocking Video from Prof Karim Meeran

jimh111 profile image
121 Replies

Prof Meeran arranged a petition about the price of liothyronine and other medicines. Here is a video he made for presentation to medical colleagues

I agree with the comment below the video - T3 should not be used in primary hyperthyroidism!

[Edited by Admin to remove video link as it has since been closed to public access, presumably by the author]

121 Replies
DippyDame profile image
DippyDame

Blimey!!

SlowDragon profile image
SlowDragonAdministrator

Well that’s one more medic to steer well away from

Extremely condescending throughout

Video also factually inaccurate in so many places

Showed results where Ft4 and Ft3 rock bottom…..but patients repeatedly referred to as euthyroid

jimh111 profile image
jimh111 in reply to SlowDragon

Doesn't grasp that TSH, fT3 and fT4 are interrelated, as fT3 or fT4 falls TSH should jump up.

Brightness14 profile image
Brightness14 in reply to jimh111

I watched the video, thank you for posting it. I don't agree with what he is stating, everyone is different. I know that before my thyroid was removed for a huge lump moving my trachea my thyroid TSH was just 1.8 and working perfectly, I had never been treated prior. After only 6 months on Levo I was ill, weak and putting on weight for the first time in my life. I then joined this site and started myself on NDT that was seven years ago. I am sure that the ratios are different for people than for pigs but my body is used to it. I live in France and my GP prescribes me Levo plus T3. He doesn't know that I take NDT and is very happy with my blood test results which are perfect. I am 76 years old with no heart or bone problems.

I receive all of my medications for free here as I have no thyroid. The price for a box of T3 30 tablets is around 6 euros if you have to pay.

jimh111 profile image
jimh111 in reply to Brightness14

This argument around T3 : T4 ratios is silly. If they really cared they would prescribe some levothyroxine and a little NDT thus getting the exact ratio and supplying anything else in NDT they might be of help.

Brightness14 profile image
Brightness14 in reply to jimh111

Exactly, I may well try it out.

jand123 profile image
jand123 in reply to Brightness14

hi there , what brand of T3 do you use? Mine are so expensive in Ireland (Thybon henning 20)

jimh111 profile image
jimh111 in reply to jand123

Where do you get it from and what price? As Ireland is in the EU you can order it direct from Germany at a reasonable price. When we could get it in the UK (Nov 2020) it was EU 30 for 100 tablets.

helvella profile image
helvellaAdministrator in reply to jimh111

Check whether Irish residents are legally allowed to purchase prescription-only medicines from abroad. I have a suspicion they are not.

It is permitted under EU regulations to have controls in place on medicines which would not be allowed on other, unregulated, products.

jimh111 profile image
jimh111 in reply to helvella

Interesting. We were able to get it in the UK when we were part of the EU as a prescription could be filled by any EU country. Maybe specific rules in Ireland.

jand123 profile image
jand123 in reply to jimh111

I get a prescription first, which I pay for €50 for 3 months, then I buy from the pharmacy €57 for 50 tablets, which company in Germany? can you say or PM me. I used to import Naturethroid myself from USA, much cheaper!

jimh111 profile image
jimh111 in reply to jand123

Bennewitz, if you live in the EU and have a prescription.

jand123 profile image
jand123 in reply to jimh111

I am in the process of moving back to uk, Where do you buy then?

jimh111 profile image
jimh111 in reply to jand123

See google.com/amp/s/thyroiduk.... . I get them from Roseway, currently £60 for 100 tablets. You must have a prescription and it must state 'Thybon Henning'. They come in packs of 50 and 100 X 20 mcg tablets.

Brightness14 profile image
Brightness14 in reply to jand123

I don't us T3 I use thyroid s NDT. Since my thyroidectomy that's all I have been on and I am fine. I live in France and do get T3 plus Levo every month prescribed by my GP.

It's free because I have no thyroid, but I use NDT anyway. If you have to pay it's 30 tablets for around 6 Euros it's made by Sanofi in France.

jimh111 profile image
jimh111 in reply to Brightness14

jand123 as noted here Sanofi T3 is 6 Euro for 30 tablets. Not sure if this is Thybon Henning (made by Sanofi) as Thybon comes in packs of 50 or 100 tablets.

helvella profile image
helvellaAdministrator in reply to jimh111

Sanofi Cynomel is not the same as Sanofi Thybon Henning. For a start, Thybon Henning is based on Liothyronine hydrochloride whereas Cynomel is based on Liothyronine sodium (as virtually all T3 products are).

jimh111 profile image
jimh111 in reply to helvella

Oh. Sanofi make more than one brand of liothyronine. So complicated.

jand123 profile image
jand123 in reply to jimh111

Thank you , I got yr last comment,😀 I think it was removed

jimh111 profile image
jimh111 in reply to jand123

I think it was removed in error as it was limited to liothyronine on prescription as listed on the Thyroid UK webpage. Never mind, you got the details and mistakes can happen.

jand123 profile image
jand123 in reply to helvella

Hi Helvella, is Cynomel better than Thybon?

helvella profile image
helvellaAdministrator in reply to jand123

I wouldn't say either is better than the other. Both will be manufactured to European standards. But we are all different. One person might prefer one, another person the other.

However, there was a shortage of Sanofi Cynomel for some time (not sure if it is fully resolved). I think many existing patients in France could just about get hold of it but definitely short. Which meant some might have tried Thybon Henning.

And, in the past, it was easier to get Thybon Henning online than Sanofi Cynomel (with a prescription in both cases) so more UK people are likely to have tried Thybon Henning, which might skew the impression we get.

jand123 profile image
jand123 in reply to helvella

Thank you !

jand123 profile image
jand123 in reply to jimh111

I see Sanofi has a branch in Waterford Ireland, but probably not available to the public, I will check

Brightness14 profile image
Brightness14 in reply to jimh111

Mine is called Cynomel made by Sanofi in France the box contains 30 tablets 0,025mg. I have just looked up the ingredient which is Liothyronine Sodium.

jimh111 profile image
jimh111 in reply to Brightness14

Yes, as I know now Sanofi make at least two brands of liothyronine. Cynomel from France which like almost every other brand is liothyronine sodium and Thybon 20 Henning which is liothyronine chloride. They are both essentially the same. I haven't tried Cynomel but I have found Thybon better than the UK brands and Cytomel from Turkey. Thybon just seems a bit better, perhaps it is absorbed more slowly, I can't find any information on it's pharacokinetics. I think Cynomel is cheaper than Thybon, it used to be. For both you need to be in the EU and have a prescription although some UK pharmacies will supply if the prescription states the brand name.

Brightness14 profile image
Brightness14 in reply to jimh111

Thank you I never realised that they made two types.

jimh111 profile image
jimh111 in reply to Brightness14

Thybon is the only liothyronine chloride as far as I know.

helvella profile image
helvellaAdministrator in reply to Brightness14

I think it might be important to look at this from the point of view of how it came about.

Sanofi-Aventis in France had been making Cynomel fo ryears.

Sanofi Deutschland acquired Henning who had been making Thybon Henning for years. And, for reasons obscured to us, they had used Liothyronine hydrochloride.

So we ended up in this situation as a result of takeovers and decisions made many years ago. I doubt Sanofi particularity want to have two products. I doubt any new product will use Liothyronine hydrochloride.

jimh111 profile image
jimh111 in reply to helvella

Companies acquire brands. Brands can be worth far more than the product. Companies sometimes consolidate the product whilst selling it under multiple brand names. I think Thybon will stay as it is.

marigold22 profile image
marigold22

I've watched the video. Prof Meeran is saying that there is absolutely no proof that T3 has any benefits. He advocates using T4 only. He has a clinic to wean people off T3. Why would he bother arranging a petition regarding the price of liothyronine?

jimh111 profile image
jimh111 in reply to marigold22

It's only a guess but I suspect he was interested in the price of hydrocortisone and since liothyronine was also subjected to price hikes he could use thyroid patients to get more signatures on his petition.

BrynGlas profile image
BrynGlas in reply to marigold22

This person - assumably Prof Meeron is is bad as my ex GP, who told me that T3 - Tiromel - whas illegal!!

BrynGlas profile image
BrynGlas in reply to BrynGlas

I am lost now. I presume the link to the video has been 'killed'?

RedApple profile image
RedAppleAdministrator in reply to BrynGlas

BrynGlas, the video has been taken offline, presumably by it's author. Most probably as a direct result of the publicity it has received on this forum.

jimh111 profile image
jimh111 in reply to BrynGlas

It has been replaced with a later video which omits many of the incorrect statements. I guess colleagues corrected him. The problem is many of his audience will have been misinformed and perhaps not been made aware of this.

The video is referenced below by Newmummy82.

BrynGlas profile image
BrynGlas in reply to jimh111

Thanks Jim

Geogeor profile image
Geogeor in reply to jimh111

I’m glad it’s been corrected - at the very least.

A public Correction for all those who attended and were misinformed then would also help.

jimh111 profile image
jimh111 in reply to Geogeor

Retraining a lot of medical professionals. The 'corrected' version merely omits a few of the bigger howlers, no actual correction.

Geogeor profile image
Geogeor in reply to jimh111

Weird it should be treated as a simple rebranding exercise rather than an accountability one / an opportunity to apologise.

Ginny52 profile image
Ginny52

watching with subtitles to not irritate family- watch out for risk of asparagus!

Definitely not motivated by best interests of patients, which accords with my experience!

Thank you Jim🌟

turquoisea7 profile image
turquoisea7 in reply to Ginny52

I have to know, what about the risk of asparagus??!

Ginny52 profile image
Ginny52 in reply to turquoisea7

coming shortly! X

jimh111 profile image
jimh111

If you click on the YouTube link you can see comments and make comments.

helvella profile image
helvellaAdministrator in reply to jimh111

And your comment is excellent.

SlowDragon profile image
SlowDragonAdministrator

imperial college have already addressed the hydrocortisone price gouging by making it “in-house”

The same should/could happen for T3 (liothyronine). It’s not an expensive drug to manufacture

imperialendo.com/price-gouging

The NHS was forced to pay an extra £60 million per year until 2017. Imperial College commissioned the synthesis of low strength hydrocortisone from Genesis Pharma, who then launched the drug on the open market. Until then, there was no competition. 

The study, funded by the NIHR (the research arm of the NHS), required a modest investment of approximately £100,000 to initiate the process.

This contributed to a reducing trend in hydrocortisone prices, from over £147.50pcm to £3.55pcm between 2017 and March 2021. 

This demonstrates the effectiveness of non-profit motivation in competing with industry; an investment of £100,000 has saved the NHS over £50 million each year, without the need to invoke the CMA.

The CMA has now fined industry £260 million for colluding to prevent competition, but this happened after the price fell (gov.uk/government/news/cma-....

Hydrocortisone is just one example of the abuse of market position, but there are many more.

Synacthen, Liothyronine and Lithium carbonate are examples of very cheap generics that have been “debranded” and then the price increased substantially.

Very recently, Advanz pharma have been fined for raising the price of liothyronine bbc.co.uk/news/business-580... , but the price remains high and there will be an appeal.

jimh111 profile image
jimh111 in reply to SlowDragon

They don’t need to make it. They only need to license cheap liothyronine from e.g. Turkey. Even if you make it you still need to get the license. Clearly there is no desire to get cheap liothyronine.

Years ago I contacted the BTA about the price of liothyronine going up, I got no response. A year later I tried again and they acted six months later when Chatterjee had taken over as President.

I originally raised the issue in 2015 bmj.com/content/351/bmj.h51... . Many doctors and endocrinologists would have become aware of it but chose to do nothing. I suspect endocrinologists were pleased with the price hikes as they didn’t want to prescribe.

BrynGlas profile image
BrynGlas in reply to jimh111

That's what I buy, Tiromel from Turkey. It is cheap and has given me back a life.

I was diagnosed in 1999. I had been 10st 3 lbs all my adult life until then. After 1999 I never knew what I weighed when I woke up each day.

I felt terrible for some reason in the late 90's. I had begun to be unable to sleep, something that has bothered me ever since. I got engaged in 1998, but couldn't wear any rings, because my fingers swelled so much - especially overnight - that I couldn't get my engagement off in the morning. I feared it would have to be cut off so I stopped wearing rings and still don't today.

My GP didn't know what was wrong with me, but after a few months he apologised and said that he should have twigged earlier - because of my swelling fingers - that I was hypo thyroid. I have never heard that since as a symptom of low thyroid, but I was exstatic because I was told that they would make me feel back to normal in no time!!!

I wasn't feeling any better on Levo and I kept badgering the GP to get me right again. I began to feel depressed and went onto anti depressants.

I had bought my size 14 wedding dress in January 1999. That was when I started to gain weight. Nothing stopped the relentless weight gain, from my steqdy adult weight of 10 stone 3 pounds to over 12 stones by June 1999. I had to find someone to help me let it out as much as possible for the big day but on my wedding day, July 17th, I was either having hot flushes - I had been well into menopause since I was 42, by 1999 I was 46 years old - and taking cold showers in my cousin's hotel room as often as possible - or pulling my wedding dress down constantly, because I was still gaining weight but we could only let it out a finite amount of course, so it kept creeping up with every step I took on that day! Tragic on your wedding day, it really was to me anyway.

I was completely mystified. I couldn't stop gaining weight no matter what I did, or didn't do.

My GP finally told me that some people never get well on Levo. He gave me no hope of any improvement, telling me that there was nothing else but Levo. I had no idea about thyroid treatment. I wasn't aware of Endocrinologists, or anything like that and I just resigned myself to taking the tablets that have never been of any use to me.

Eventually I got to well over 15 stones and had to resign myself to having no life, no sleep without sleeping tablets, itchy ears which made me feels as though I had an insect in there, so many things. Mostly I was treated as a lot of a nuisance.

They put me on HRT, then when I gained 2 stones in the first fortnight of using it, I was told that I wasn't going to be able to take it again because of my weight gain. They didn't tell me that it was my fault then at least, but other GP's have told me since that my weight gain was my own fault, calories in must be less than calories out. If I stopped watching daytime tv while eating cream cakes I might lose some weight etc.

It wasn't until 2019 that I knuckled down to having to sort myself out without referring to a GP. I found this Forum. I bought myself T3 in 2020 I think it was and I stopped taking any Levo at all in 2021. I have a life now, though it isn't perfect, on T3 alone.

I had been subjected to a new GP who bought out the previous GP. He kept reducing my Levo saying I was over medicated. I now know that it was because my TSH was rising at every blood test.

I wonder why that was?

Then he left me another year before I could have the next blood test with the same result of course and he reduced Levo again.

With the help of the Admin staff on this forum I got free of the GP who was making me so much sicker year by year. I sold my house in Wales and moved back to England and with the help of my own sourced and financed T3 - who the GP had told me was an illegal drug and told me never to mention T3 to him again - I have a life again at the age of 70 years.

I still wonder, 'Should I try NDT?' though, there is room for improvement, weight is still an issue. I can't get lower than 12 stone 5lbs before I start to slowly increase.

I don't do fasting, I eat keto without worrying about calories, which is a great improvement at least.

I feel as though Levo was a type of poison for me. Getting to be hypothyroid at the same time as going through the menopause - that seems to be the same for other ladies on here - has cost me many years of my life.

Now I am going to scream very loudly (becabecabecause becabecabecause) BECAUSE my keyboard is constantly trying to sabotage my (yp8ntyp8ntyp8ngtyping) TYPING like that.

I can't tell (yoyoyoU how many timtimtimes ) YOU HOW MANY TIMES I HAVE (LOLOOLOOKED) LOOKED UP TO (SESEE) A LINE OF RUBBISH APPEAR ACROSS MY SCREEN. WHY???

WHAT CAN I DO TO STOP THE PAGE DECIDING THAT IT KNOWS WHAT I WANT TO PUT DOWN IN THIS (MESMESSAGEL MESMESSAGE) MESSAGE PLEASE?

I KNOW MY OWN MIND BETTER THAN IT DOES.

I AM GOING FROM THE SUBLIME TO THE RIDICULOUS HERE!

humanbean profile image
humanbean in reply to BrynGlas

I had been subjected to a new GP who bought out the previous GP. He kept reducing my Levo saying I was over medicated. I now know that it was because my TSH was rising at every blood test.

It shocks and depresses me how often this evidence of dreadful and incompetent treatment crops up - doctors who think a high TSH is evidence of over-dosing on Levo, instead of the truth - that it is completely the reverse!

BrynGlas profile image
BrynGlas in reply to humanbean

That same GP surgery got me my licence taken off me on June 8th, 2021. I haven't had a licence all this time up to 3 weeks ago, when my new GP here in Stoke could finally got through to DVLA that I (I am also epileptic) have been controlled on Levatiracetum 25mg BDS. I never had another fit after I was prescribed that, thank you God.

I will tell you about this in another post, if that is ok? As it is about epilepsy is that ok Admins?

helvella profile image
helvellaAdministrator in reply to BrynGlas

Physical issues such as a book or pen or something touching the keyboard, or some dirt in the key mechanisms, can cause such typing issues. I have sometimes found a good shake of the keyboard helps - but needs care on a laptop not to overdo it.

BrynGlas profile image
BrynGlas in reply to helvella

I was using my tablet Helvella so I know it wasn't anything like that! Once I sent my message it hasn't happened again.

It took me ages to keep deleting gobbledygook & retype! LoL

helvella profile image
helvellaAdministrator

His labouring the point about "grains" is utterly ridiculous!

It is as if it were an entirely different form of delivery! Not just one of the standard measures of weight once used right across pharmacy and medicine. And later shows his prejudice still further by calling them pellets!

Examples:

Aspirin on dosages of 300 or 325 milligrams. Why? That was five grains - but converted to milligrams using either the formalised 60 mg per grain, or the somewhat more accurate 65 mg per grain.

(Similar observations apply to many tramadol/paracetamol combinations, potassium iodide, many medicines contain 65 mg of caffeine - one grain, cough/chest medicines which have 130 mg of an active ingredient per 5mL spoonful, etc. Of course, some might simply happen to work out like that, but some of the older ones clearly come from old measures.)

So we continue to be dosed by grains for some medicines!

And calling Armour Thyroid "natural thyroxine" is ludicrous - by anyone. That he does so then goes on about it containing T4 and T3 is doubly ludicrous.

He implies that all who take Armour Thyroid take just one dose a day. And haven't even tried split dosing.

He shows a TSH in the morning and say it will be much higher when the Armour Thyroid has been used up. As if TSH changes dramatically within every day.

The T3 prices he quotes are from the worst times. Rather than over £250, he should have noted £55 for an up to date cost.

He implies all tissue can convert T4 to T3. Except, very noticeably, the thyroid itself! He has clearly not been keeping up with diogenes et al.

He appears not to have read:

New-Onset Heart Failure in the Setting of T4-Conversion Disorder

cureus.com/articles/93795-n...

(Published a few weeks after his video but there have been previous similar observations.)

helvella profile image
helvellaAdministrator in reply to helvella

I also cringe at his pronunciation - Dee-odd-inase.

Maybe it is just me and I get it wrong? Certainly possible. My take is closer to this:

howtopronounce.com/deiodinases

Sorry - it is USA, it is too fast, but it more or less captures the letters and meaning for me. (It is not commonly included in the major pronunciation dictionaries.)

jimh111 profile image
jimh111 in reply to helvella

Remins me of a joke in our student rag mag from 1972.

Little boy says to little girl in pool “I’m going to duck you”.

Little girl replies “no you’re not, you can’t even say it”!

jimh111 profile image
jimh111 in reply to helvella

At around 23:25 he refers to ERFA as “that artificial T3”. I didn’t bother picking up on that in my YouTube comments as it’s trivial. It demonstrates an attitude rather than a misunderstanding.

helvella profile image
helvellaAdministrator in reply to jimh111

Very much bad attitude.

nellie237 profile image
nellie237 in reply to helvella

I think that we are most aware of this type of misleading information as 'spin' in politics. The NHS seem to be using this tactic more & more..............Statins don't cause side effects.....it's the NOCEBO effect! Unfortunately it works..........up to a point.

I was appalled by the female medic doing the introduction. Her publicly sarcastic manner and laughing about her her patient was derogatory to the point of being cruel, esp if the patient concerned has psychological problems as intimated. I suspect the truth is that the patient is more knowledgable than the medic, and the medic doesn't like it.

pennyannie profile image
pennyannie

I'm lost for words :

His whole attitude is one of treating people as ignorant and his choice of words disrespectful and condescending :

A Professor of Arrogance seems a more fitting title - unbelievable :

diogenes profile image
diogenes

This "youngish" medical dinosaur can spout as many videos like this as he likes, but it doesn't alter the essential facts one iota. If people choose not to listen or read, and think themselves superior because of it, I'm sorry for them, but also saddened by their misleading others who also have no knowledge or understanding of modern advances in the field.

SlowDragon profile image
SlowDragonAdministrator

24 minutes through video when he’s showing results over time of some poop patient he “successfully “ got off Erfa

A) there’s no ranges given on Ft4 and Ft3 results

B) Ft4 and Ft3 remain at what looks like bottom or range and TSH does not rise

C) a YEAR later Ft4 and Ft3 remain low and and cholesterol high

No vitamin D, folate, ferritin or B12 testing at all

also high parathyroid level…..suggests vitamin D might be low

Another endocrinologist takes pity on this patient and starts them back on levothyroxine plus T3

jimh111 profile image
jimh111 in reply to SlowDragon

… and he refutes the wise endocrinologist.

nellie237 profile image
nellie237 in reply to jimh111

...........and calls himself "The Eminent Professor"

nellie237 profile image
nellie237

This video made me (T4 only) want to go out and buy some T3. Obviously that's my psychological problem...........

I would also very much like to remove his thyroid.

Fruitandnutcase profile image
Fruitandnutcase in reply to nellie237

without anaesthetic 😉

nellie237 profile image
nellie237

Not working as expected.🤣🤣🤣

SlowDragon profile image
SlowDragonAdministrator

we do really need (by private messages only) a list of endocrinologists on a list entitled

“Do not see under any circumstances”

LAHs profile image
LAHs

Oh Geez, so many inacuracies!

Starting with the title, who treats hyperthyroidism with T3! It MUST have been a typo, (Kareem meant hypothyroidism).

Armour Thyroid no longer uses the natural porcine T4/T3 ratio (3:1) they toned it down by adding a little Levo to get to the human ratio of 4:1. Just read the label doc. and check your facts first.

No reference to the effects of Selenium in the studies quoted in the first half of the video. If you ignore Se and it is too low or variable, of course you will get meaningless results. Even when Se was mentioned towards the end, it was glossed over like it didn't matter - it's the catalyst for the whole T4 to T3 reaction Kareem! He said (sic) no one knows how Se works, yes, some people do.

And people feel tired when their T3 runs out...well duh, that's why we are taking it. We normally sleep at that point (because it's bedtime!) then repeat the dose the next morning. (Yes, there are variations on this I know).

And some of the reports of "tiredness". I wasn't "tired" on T4 alone, I was dying! Yes, I know that sounds hyperbolic but it is the simple truth.

TSH110 profile image
TSH110 in reply to LAHs

me too it was like being in a living death simply awful

Poniesrfun profile image
Poniesrfun

Notes I took -

Suppressed TSH leads to A-fib and osteoporosis.

Conflates low TSH with excessively high levels of FT4 or FT3

No objective evaluation of symptoms. Focus is on psychological well being - survey questions are all subjective in nature.

His complicated T3 withdrawal - making the patient feel valued? Isn’t this more than a bit paternalistic? Why not, instead, do the work it takes to make, keep a patient healthy.

Private clinic example saying “symptomatic price too high to pay”.  So bedridden patient OK if lab values are “within normal limits”? What ever happened to "treat the patient, not the numbers"?

No realistic look at ancillary issues (anemia, dietary deficiencies) vs psychological.

Horrendous disdain for patients and their experiences. 

I found the emphasis on "tiredness" and "feeling well" or "preferred" very annoying but we see this kind of terminology over and over again in studies. I have argued with doctors at conferences and online about why they don't use objective standards to evaluate symptoms (they do exist). When they won't or don't, it's important that patients present their symptoms as objectively as possible. The lack of objectivity is also quite misogynistic.

Many, many studies also use "healthy" participants; few have used subjects totally dependent on oral thyroid hormone following TT. How many results are affected by endogenous production of thyroid hormone independent of the study meds given. The few that have been done with thyroid cancer patients have shown no association of combination therapy (with T4 plus T3 or with DTE) with either A-fib or osteoporosis.

Patti in AZ

Babette profile image
Babette

The argument over cost @ 2.52 uses the prices to 2016. I thought they'd come down since then?

SlowDragon profile image
SlowDragonAdministrator in reply to Babette

prices have dramatically reduced since 2016

Down from £268 to £59 now

This video made in March 2022 ….price then was about £89

Deliberately misleading to not include price drop

pennyannie profile image
pennyannie

I couldn't sleep last night thinking about this awful video - so I've joined you " on the other side " this morning :

I was hoping it would have been taken down as it is so inaccurate and wrong in so many ways - never left a comment outside of here anywhere before - hey ho !!!

Jtaylorhoo profile image
Jtaylorhoo

This video has really upset me. I’m already suffering from horrid fatigue & am hoping my endocrinologist will increase my T3 next week. With the accompanying depression & negativity, I didn’t need this. I need hope!

humanbean profile image
humanbean

The video has been made private. Obviously somebody involved monitors Thyroid UK or the author of the video got notified about the unflattering comments.

Zephyrbear profile image
Zephyrbear in reply to humanbean

Yes, I've just got that message too...

Gingernut44 profile image
Gingernut44 in reply to humanbean

that’s what the video says right now at 11 am Sunday 11 September 22 so I haven’t been able to see it. Just as well it seems as I’m mad enough already at the way I’ve been treated on the NHS. Big brother is obviously watching us.

nellie237 profile image
nellie237 in reply to humanbean

If it was robust....there would'nt be any need to make it private would there?

Says it all

FAB-jellybean profile image
FAB-jellybean

I can't see the video either; says it's private. Wasn't sure if it's just my cookie settings stopping it so had a look for it on YouTube. There's nothing even like what your comments are describing. Have you perhaps done enough to make him rethink??

From your comments, he sounds like another typical doctor that has got too big for his boots and has developed a God-complex where they KNOW better than everyone else (except they don't). It's just blind arrogance!! I can only hope that other doctors don't listen to him and perpetuate our problems.

Milkyway88 profile image
Milkyway88

I can’t open the video, does anyone know why?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Milkyway88

If you read the comments just above yours (starting with Humanbean's) it explains it.

JaneChapple profile image
JaneChapple

I wss able to access this video last night but not this morning, probably just as well from all the comments. May be we have a spy in the works?@🤓❤

diogenes profile image
diogenes

I think one sees by now, if indeed there was any doubt, the "mountain of indifference and complacency" that has to be conquered, as conquered it must eventually be. No-one, myself or anyone else, can kick against reality and hope to prevail, however staunchly they refuse to admit error. I have written off UK medics as akin to the "tired old tombstones" that Charles III described the Chinese leaders at that time. It's in the US (as I thought would be the case) that the light is dawning that all is not well with thyroid diagnosis and treatment. It's from there that the light will suddenly open UK eyes.

humanbean profile image
humanbean in reply to diogenes

I'm not positive of my numbers but a few years ago (2015?) the American Thyroid Association posted new guidelines for the treatment of hypothyroidism which went down like a ton of bricks with patients all over the world. I read that they received tens of thousands of comments on their Facebook page from patients that were mainly insulting. Perhaps some doctors took the hint from that.

SlowDragon profile image
SlowDragonAdministrator in reply to diogenes

This video is more enlightened by Dr Antonio Bianco

youtu.be/5yu4Z8Fb8e8

Very interesting, lots of salient points

But even here ….towards end of the presentation he labours the point TSH should be kept within range

Wouldn’t it be easy if most T3 patients had TSH within range …..but the reverse is the norm…..as soon as most people take any T3 …..TSH drops dramatically

Last question right at the end of video interesting on this point ….and not answered satisfactory

Goldfinch7 profile image
Goldfinch7 in reply to SlowDragon

thankyou so much for posting this - i found it very very helpful!

SlowDragon profile image
SlowDragonAdministrator in reply to Goldfinch7

So refreshing…a specialist who listens to patients, believes them and questions the status quo

U.K. medical training seems to specialise is producing condescending, arrogant, misogynistic specialists who don’t bother to ask why so many thyroid patients find current treatment frequently leaves them bedbound and zero quality of life ……

Lack of T3 ….for many doesn’t just leave them “a little bit tired” ….it leaves them unable to function

marram profile image
marram

I can't see the video.

SeasideSusie profile image
SeasideSusieAdministrator in reply to marram

Scroll up a bit and read the comments which explain this, starting with Humanbean's which is about 8 messages up.

helvella profile image
helvellaAdministrator

If he stands behind his views he should not hide them. He should properly discuss them. Argue, debate, explain. Take it point by point.

If he is right, does he not owe us (all thyroid patients) that?

It wasn't us, those who disagree with him, who made the video public.

It wasn't us who decided that de-prescribing T3 and desiccated thyroid was appropriate. Nor us who claim to have achieved a heroin-like withdrawal.

It wasn't us who decided the this was justified by cost when, as is well-known, the issue is why we are paying that price. The real argument is that liothyronine should be much closer to levothyroxine in price. Take that cost justification out of the video and the rest really falls apart.

tattybogle profile image
tattybogle

What's that strange sound i can hear ? ... oh .... perhaps it's the sound of a Clique of Endosaurs bravely running away and hiding .....

..
jimh111 profile image
jimh111

I will be off line for a while. I've got a lot of urgent ironing (bedsheets) and squash to play. I see the video has been taken off line. I did take the precaution of downloading it but I'm fairly sure I would not be allowed to share this version.

There are other issues around this which I can't mention because we cannot discuss individual doctors on the forum.

helvella profile image
helvellaAdministrator in reply to jimh111

I think ironing is now regarded as a deeply anti-social activity requiring, as it does for most of us, use of electricity. :-)

(That's my excuse...)

jimh111 profile image
jimh111 in reply to helvella

I always iron while the cloth is damp, thus avoiding using steam and so not wasting latent heat.

tattybogle profile image
tattybogle in reply to jimh111

i do ironing by putting it on a pile where i leave it till whoever it belongs to has grown out of it . then i give it away. simples.

pennyannie profile image
pennyannie in reply to jimh111

Ditto - and please enjoy the game and whack a squash ball for me :

CBDB profile image
CBDB

I had actually also left a message this morning on this video, as it shocked both me and my husband, who has suffered with me for 10 years in my thyroid-related health journey. Even if not considering the facts, the attitude towards patients was extraordinary. My message on the video attached as image.

Comment
pennyannie profile image
pennyannie in reply to CBDB

Yes I saw your reply this morning and went ahead with my opinion afterwards.

Glad it's gone - and hope those 2 self interested parties look to themselves and read the replies though doubt they will :

Newmummy82 profile image
Newmummy82

found this other video of him on YouTube - talking about how thyroid patients can’t be trusted to accurately report their symptoms because we’re all obviously hypercondriacs & how T3 is addictive - wow imagine that - being addicted to a medication which makes you feel well!

I feel sorry for this man’s patients.

Comments open on this one btw …😏m.youtube.com/watch?v=Vz64o...

jimh111 profile image
jimh111 in reply to Newmummy82

Thanks I will have a look at it later. I'm teetotal but sometimes I wish I wasn't.

humanbean profile image
humanbean in reply to Newmummy82

I notice that video has a publishing date of today - 11th September 2022.

tattybogle profile image
tattybogle in reply to humanbean

just watched it .. looks like he took the other one down and put this one up instead ... last sentence is ' does anyone have any thoughts ? '

hopefully he'll get some.

he's using a duff homemade graph to explain away cycles of tiredness /feeling better, an then using that to dismiss any evidence from studies .

Oh and he seems obsessed by ' tiredness' .... as though no other symptoms exist/ matter.

he plainly states he want's the wording 'trial' of T3 removed from guidelines.

my brain isn't sharp enough to pull it to pieces properly this evening. i'v e got a nasty cold.. hope somebody else is up to it.

pennyannie profile image
pennyannie in reply to tattybogle

All I can now remember is the graph showing the massive increase in T3 cost compared to that of T4 with no mention of the reason why.

The NHS took action by pulling prescriptions of T3 despite patients being well and happy on this medication and refusing new patients any treatment options.

The NHS were quite happy for doctors to prescribe T3 and or Natural Desiccated Thyroid if patient health wasn't fully restored on T4 monotherapy - whether a placebo or not in the eyes of the NHS.

Now the doctor has no option, just T4 and anti depressants, so that's seen as ok.

No discussion on thyroidless patients so I don't know where I sit in his tiredness diagram - and it's all too many boxes and graphs to justify the budget for his T3 Withdrawal Clinic and I just can't listen to him anymore and need to sleep tonight.

I wonder if I'll get an answer or reply to my post I left under the first video ?

Somehow - I now seem very tired - all of a sudden - just like that - can't think why - night night:

jimh111 profile image
jimh111 in reply to pennyannie

The price of liothyronine increased dramatically because they could get away with it. Through my MP I notified the Health Secretary, his junior minister just echoed the manufacturer’s reply. I contacted the BTA, twice, a year apart. After the second contact and a change of President the BTA started to act, six months later.

The manufacturer got away with ripping off the NHS to the tune of over £20m as year because the BTA preferred high liothyronine prices and the Government were happy with the setup.

pennyannie profile image
pennyannie in reply to jimh111

Yes thank you -

I' ve been around long enough to know of the back story and fighting the system back in 2016/18 simply exacerbated my symptoms so I jumped ship and started self medicating.

Both a T3/T4 combo and NDT worked for me and I have settled on NDT as it feels softer on my body, and am much improved and have my life back, as best as it can be after having had RAI thyroid ablation in 2005.

This last video was simply a further mathematical ego massaging exercise to ensure his T3 Clinic continues to get funding and justification for his own ends and has nothing to do with the health, or well being of any patients.

I find his attitude and vagueness around actual facts - disingenuous.

jimh111 profile image
jimh111 in reply to humanbean

Yes, it was uploaded three hours ago (around 14:00 - 15:00).

Must be the approved one for the plebs.

humanbean profile image
humanbean in reply to Newmummy82

If this man was given a blood test it would turn out to be positive for T3. Does that make him secretly addicted to liothyronine?

jimh111 profile image
jimh111 in reply to Newmummy82

Now had a quick look at this video, many of the gross errors are eliminated although the same strong bias remains. Clearly someone pointed out the errors and he adjusted his presentation. Problems of attitude, bad science and misleading statements remain. There is also the issue that the original presentation was an education resource and the healthcare workers (doctors?) will have been mislead. It would be quite an effort for these people to relearn.

Arkenstone profile image
Arkenstone

I do not trustProf Meeran’s opinion. He tries to take me off T3 with quite bad consequences.

jimh111 profile image
jimh111 in reply to Arkenstone

Sorry to hear that. In his videos he reports that the withdrawal strategy is successful and patients are pleased. That isn't the impression I get although patients who do well will probably not be on the forum.

helvella profile image
helvellaAdministrator in reply to jimh111

Not meant as a comment directly on Prof Meeran, it applies across the board, but the reporting of outcomes in case studies, trials, etc., is really one-sided.

If patients have T3 or desiccated thyroid removed, and don't do well, just what are they going to do?

Will they go back to the doctor who told them they only needed levothyroxine and ask for T3/desiccated thyroid to be re-prescribed? Especially as the doctor has already identified themselves as committed to a particular view on their use. Of course they won't. Will the doctor ever find out that the removal of T3/desiccated thyroid was a failure from the patients' points of view? Of course he won't. They will end up recorded as doing fine (because no issues were notified) or "lost to follow-up".

Most patients will do one of the following:

Go to a different doctor, quite likely private;

Try to source their own without prescription;

Suffer.

In all cases, cost is likely a major impact. Whether that of private medicine. Or internet purchasing. Or of struggling to keep going in the face of continued poor functioning physically and mentally and now feeling ostracised by the medical professions.

Give me the phone numbers of all those who were taken off T3/desiccated thyroid and let me report how they feel a year or a few down the line.

diogenes profile image
diogenes in reply to helvella

The very fact that Meeran had to change items in his video clearly shows the propagandist nature of the delivery at first. He obviously didn't check on facts and merely poured out a torrent of bile against anyone having anything to do with T3 therapy. But as you say, if a patient withdraws from the usual medical path, they are rendered invisible to the system. Imagine the situation if everyone needing T3 went invisible. The medical profession would believe that T4-only works because they had no indication of the contrary. And what a mountain that would be to climb to alter their opinion. The chop logic is clear.

helvella profile image
helvellaAdministrator in reply to diogenes

Completely agree.

It is entirely understandable at the individual level that many on T3 do not tell their doctors, all too often never even see their doctors. But as a population of T3 takers they do, as you say, become invisible. In some cases, they might even be held up as proof that T4 monotherapy works brilliantly, when it is the added 5, 10 or whatever of T3 that makes all the difference.

pennyannie profile image
pennyannie in reply to helvella

I guess the same applies to those of us taking Natural Desiccated Thyroid :

I did advise my surgery back in 2018 of my action and said I was prepared to submit blood tests if they wouldn't run a TSH, T3 and T4 at the yearly function test - as requested but heard nothing - not even an acknowledgement that my letter was placed in my file - but around 18 months later T4 - Levothyroxine was removed from my prescription.

helvella profile image
helvellaAdministrator in reply to pennyannie

Yes! Was just keeping it simple by only mentioning T3. But the principles apply.

It's even possible the levothyroxine was removed by some automated process - something like "If no repeat requested within 18 months, remove from list of repeatable medicines".

pennyannie profile image
pennyannie in reply to helvella

No doubt :

Arkenstone profile image
Arkenstone in reply to jimh111

Yes, the consequence was so bad that he had to change his decision and put me back on T3. Thank goodness for my other Endocrinologist, who is renowned in his field and very well respected, otherwise I would not have stood a chance. Till today I am so grateful to the other Prof for sticking his neck out for me case.

Lesleynotts profile image
Lesleynotts

Meeran is using dubious and flimsy evidence to rubbish T3 and focusing only on tiredness.

Many of us are certain that taking T3 has helped us. I had a variable and mostly too high TSH along with other problems, my TSH went lower and stabilised after adding more T3. The variable TSH was not because I had missed tablets etc. and cannot be explained because of a placebo effect!

Looking at Meeran's second unsatisfactory video he mentioned a trial where 10mcg of T3 was equated with 50 mcg of T4. I and others think that 10 mcg of T3 is equivalent to less T4 and so we have grounds for disputing its result.

He ends the video by giving his opinion that the possibility of a trial of T3 should be removed from the guidelines - that is definitely something that we need to make sure does not happen. Perhaps us T3 takers should write to this so called Prof stating how T3 has benefitted us. I think that he would receive some list of different ways and that he would not have the data to discount them all. He did ask for comments but I did not see a link for doing so on the second video but I can write to his academic address. I hope others will do likewise!

jimh111 profile image
jimh111 in reply to Lesleynotts

There was an epidemic of mass stupidity in the endocrine world for many years. T3 is four or five times as potent in the blood as T4. Consequently all the studies used these ratios and are invalid. It is plain daft to think that the T3:T4 ratio you put in your gob is the ratio that will end up in the blood. Levothyroxine and liothyronine have different absorption rates (50% vs 95%) and different elimination half lives (seven days vs one day).

Francesco Celi did a study that measured the effect of levo and lio on the pituitary and found that lio is about 3x as potent as levo. See ncbi.nlm.nih.gov/pmc/articl... . Thus, any comparative studies should use a 1:3 lio / levo subsitution ratio.

False studies were carried out for decades before they realised they were wrong. The sort of thing an average school kid could work out.

diogenes profile image
diogenes in reply to jimh111

And also assuming by that argument that the FT3/4 taken simply stops the deiodinases from converting further T4 to T3 in the tissues . Enzyme deactivation (by ubiquitin actions) will indeed control any T4/3 changes to balance out what is given according to the individual's needs.

jimh111 profile image
jimh111 in reply to diogenes

except TSH stimulates T4 to T3 conversion (D2 enzyme). If you give only T4 you need a lower TSH to get enough serum T3. The lower TSH reduces D2 (local conversion) depriving tissues dependent on D2 (e.g. brain) of T3 - local hypothyroidism. Adding some liothyronine gives normal fT3 with a higher TSH as per normal. pubmed.ncbi.nlm.nih.gov/864... .

People with a TSH that is subnormal have a big problem because their local deiodinase (D2) will be reduced. Giving some T3 or T4 will further reduce their weak TSH and lower their local T3. These people need more T3 than normal.

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