Editorial on Bianco Book: This is an editorial... - Thyroid UK

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Editorial on Bianco Book

diogenes profile image
diogenesRemembering
31 Replies

This is an editorial piece on Bianco's recent book. The author is a frequent co-author with Bianco so it's not surprising that her opinion is favourable.

Clinical ThyroidologyVol. 35, No. 1

Hypothyroidism

Free Access

A Landmark Book Offers Comprehensive Hypothyroidism Information for All

Elizabeth A. McAninch

Published Online:17 Jan 2023doi.org/10.1089/ct.2023;35....

Written by
diogenes profile image
diogenes
Remembering
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SlowDragon profile image
SlowDragonAdministrator

couple of links discussing this

liebertpub.com/doi/full/10....

liebertpub.com/doi/pdf/10.1...

Musicmonkey profile image
Musicmonkey

Quote from the review ' it is becoming better recognized that millions of hypothyroid patients in the United States and worldwide have residual symptoms despite normalization of serum thyroid function tests after the initiation of levothyroxine treatment'.

It's a pity Bianco thinks that patients are the target audience, rather than physicians. Possibly more patients are already up to speed with what needs to change than their doctors.

I am happy that this book has been written, but don't agree that the aim for patients on supplementary T3 should be an in range TSH. Also, I don't think it's realistic for those on T3 treatment to keep T3 in range. T3 will peak 3-4 hours after taking a dose and this may mean it briefly rises above the range. I'm not sure how this can be avoided if sufficient T3 is to be taken for wellbeing.

diogenes profile image
diogenesRemembering in reply toMusicmonkey

And herein lies the problem! The field including Bianco simply will not let go of the "TSH mantra". This is because to do so would be eating a large slice of humble pie. They still think that all that is missing is T3 supplementation within the classical rules of normal TSH. That the fact of direct thyroid gland production of T3 completely destroys this argument and assumption is something the field simply will not countenance. And they do so by ignoring what they don't want to read.

london81 profile image
london81 in reply todiogenes

reading this makes me realise how lucky I am to have a letter from a nhs consultant endocrinologist ( from St George’s) saying “ tsh will always be suppressed on t3”

It helps me a lot having this letter, despite the fact I’m not prescribed t3 by nhs, because at the very least no GP or endo I’ve seen since has argued with it!

jimh111 profile image
jimh111

Bianco has done a great deal of great work, more than anyone else on the crucial topic of deiodinase. I also get the feeling he would like to say more but has to stay within certain boundaries to maintain approval of peers and most importantly funding for research. I'm not supporting this, just suggesting it is a fact.

As regards many patients with primary hypothyroidism I feel his views are correct. The problem lies with the other groups of patients who may not have normal TSH secretion (for their fT3, fT4 levels) or other causes of hypothyroidism. These patients often have more disabling forms of hypothyroidism and they are ignored.

A fundamental point that is always missed is that T3 does not come from the blood. OK a little bit does and some tissues take their T3 from the blood but crucial organs such as the brain and muscles get most of their T3 from local conversion of T4. This T3 finds its way to the blood where it can be measured. If there is insufficient conversion we can detect it with a low fT3 with a moderate degree of certainty.

In cases of impaired conversion doctors rather stupidly think that restoring normal fT3 levels with tablets should correct the problem. Wrong. Most T3 doesn't come from the blood. Most T3 comes from local conversion of T3 within the tissues that need it. These tissues prefer to get their T3 from local conversion, not from the blood. Thus, restoring normal blood T3 levels with tablets ain't gonna work. These patients need abnormal fT3 levels to get better.

This may carry some risks, the evidence suggests the risk is not high. Doctors need to follow the science and accept the facts, then they can start to find better treatments.

Just_Be profile image
Just_Be in reply tojimh111

In his interview Dr Bianco explained conversion and how allowance for improved conversion is essential. I get the feeling because conversion should improve as symptoms reduce, he feels it easy for thyroid hormones levels to go too high and therefore encourages more conservative med doses that stay within range. Perhaps a little too cautious when many never achieve good conversion and are left on inadequate doses for years but he did say some need a suppressed TSH to achieve a good QOL.

jimh111 profile image
jimh111 in reply toJust_Be

It's right to advocate a cautious approach but this works both ways. There is evidence that the higher T4 levels associated with levothyroxine monotherapy increase cardiac and cancer risks. Thus, a truly cautious approach would restrict the use of monotherapy and promote combination therapy.

An important point to bear in mind is that when talking about hypothyroidism doctors are usually only thinking about primary hypothyroidism as defined by an elevated TSH and low fT4. Study subjects are recruited on this basis. Thus, people who are hypothyroid but don't have high TSH levels are not represented in the studies or the debate. The existing research does not address patients with impaired conversion and so is not valid evidence.

The DIO2 rs225014 polymorphism is a separate issue. Research shows that this has cognitive effects which are resolved with the addition of a small amount of T3. People with this polymorphism are adapted to get a little more T3 from the blood and a little less from conversion.

Bear in mind that a very low TSH is not always a supressed TSH. There is a difference between a low TSH due to too much hormone and a low TSH due to subnormal secretion from the pituitary which can happen e.g after a period of thyrotoxicosis has supressed TSH for some time.

TaraJR profile image
TaraJR

Bianco still has a long way to go, but it IS a start. He is 'admitting' he was wrong on some things before, and putting his head a little way above the parapet regarding the way things have been for so long.

I suppose Rome wasn't built in a day. But it is a start.

radd profile image
radd

I thought Bianco had expanded his views greatly.

He acknowledged  how many patients are left with residual symptoms, that TSH doesn’t always correlate with thyroid hormone levels and many endocrinologists do not accept these facts. That Levothyroxine treatment is not physiological, eg does not replace the thyroid gland and fails to restore normal thyroid hormone homeostasis in many .

He explained the healthy adult thyroid gland secretes mostly T4 and about 5 mcg T3 a day and the body uses about 25-30mcg T3 a day with the remainder produced outside of the thyroid gland , eg metabolised from T4 to T3 by deoidinases. When we don’t have a thyroid gland and treated by Levo we rely on good conversion to provide the T3 by the deiodinases which often leaves a T3 shortfall. 

He acknowledged  the conversion of T4 to T3 is less effective than the ability of T4 to normalise TSH. Therefore, Levothyroxine normalises TSH but may offer insufficient T3, and that TSH is an index to measure thyroid hormones that works for many but it isn’t a guarantee of adequate T3 levels for all. He said we should rely on both TSH and thyroid hormone levels to achieve the right dose, and that some patients will only feel well with a suppressed TSH.

He explained it may be difficult to assess if residual symptoms are the result of improper therapy or from other conditions such as menopause, other autoimmune disease, obesity, Vit B deficiency, anaemia, etc, that mimic or exacerbate hypo symptoms. This is exactly what we preach on the forum. 

He then explained the history and todays ATA, ETA and BTA guidelines stating ‘Start with Levothyroxine. If full recovery is not obtained, then try combination therapy with T4 + T3' which the medical profession do not adhere to. 

What was interesting was how during 1997 and 2914 in Tayside, Scotland, physicians looked at 34,000 people for about 17 years  taking T4 only and compared them with 400 people taking either taking T4 + T3 combo or T3 alone. They observed no differences in mortality and morbidity risk due to cardiovascular disease, artial fibrillation or fractures. Then between 2005 and 2017 in Sweden a study involving over half a million people concluded that the 11,000 using T3 did not increase mortality compared with T4 only use. 

I think he is between a rock and a hard place. He is the 'deiodinase-man' believing strongly there is a necessity for combo therapy and even has patients on T3-alone, although admits he does not understand the working behind that dosing. 

Very informative and interesting talk 😊

SarahJane1471 profile image
SarahJane1471

I thought his book was a great read. I agree with radd and TaraJR . We need to praise the fact that he is speaking out and admitting he was wrong in the past. This is a step forward surely 🤷‍♀️

diogenes profile image
diogenesRemembering in reply toSarahJane1471

I'm not saying by any means that Bianco has not taken a major step forward in his admission of past errors and raising the repectability of previously scorned combination treatment. It is simply the "TSH barrier" that prevents him from realising that TSH is not in most cases a good control parameter in treatment, except of course in the case of noncompliance; not taking the tablets. If TSH in treatment is not put on the back burner, one can't get very far, if it is going to be still the measurement for decision making. On another note, I wish our groups could combine better as progress would be much faster. Politics has always been a part of science and medicine especially, and the US mantra of "American exceptionalism" and the UK mantra of "don't change till we're forced to" aren't good bedfellows. Progress therefore is going to be slower than is necessary, as all have to come on board.

SarahJane1471 profile image
SarahJane1471 in reply todiogenes

Agreed. I wouldn’t fit BIANCOs model as my TSH is very underrange ( but not suppressed). But do you not think that if he’s admitting his errors then others may change their minds too?

diogenes profile image
diogenesRemembering in reply toSarahJane1471

The main problem here is political again. Studies have to be agreed and done in the country where changes could occur. That is, Bianco will have raised an important point, but eg the UK have to repeat the defining work to accept him. The US will however respond more rapidly. Whilst we have characters like Pearce and the Newcastle know-alls, it's going to be uphill here.

SarahJane1471 profile image
SarahJane1471 in reply todiogenes

Why oh why can’t the medical community come together more as they did with Covid 😡🙈

tattybogle profile image
tattybogle in reply toSarahJane1471

It will change minds and it will make it more acceptable to contemplate T3 combo treatment .

But if the insistence/ accepted route is that "TSH MUST be kept in range for EVERYONE or it will be dangerous" ..then that like saying "everyone is allowed to try T3 if you need to.... but only when there is no R in the month ... and no J "

SarahJane1471 profile image
SarahJane1471 in reply totattybogle

I had to really think about that one 🧐😂

lynmynott profile image
lynmynottPartnerThyroid UK in reply todiogenes

Have you ever had a discussion with Bianco? If not, do you think he would be receptive?

diogenes profile image
diogenesRemembering in reply tolynmynott

Yes we have. Bianco seems on the surface to be receptive but this is a false impression. He certainly wants to be thought of, being the first to express an opinion on combination therapy. He rarely if ever acknowedges our papers. This is because he wants to have a win-win result where combination therapy can exist side by side with "normal" TSH levels. Since this is a futile desire, he doesn't want to admit it..

lynmynott profile image
lynmynottPartnerThyroid UK in reply todiogenes

I am in contact with him and hoping to stay in contact and perhaps organise a Zoom meeting at some point to discuss certain points. :-)

radd profile image
radd in reply todiogenes

diogenes,

I think you are right but Bianco’s reasons are sincere. 

Even though thyroid hormone physiology is immensely complex if GP’s are expected to dose their patients there has to be a simple protocol to follow and the TSH suits millions of patients.

Forum members have made it their business to become well informed after poor treatment and failing to gain well being but millions of patients are not well informed and have not received poor treatment because dosing by TSH has allowed then to become well. If the TSH was completely displaced, then these patients might find themselves overdosed with higher levels of thyroid hormone in range than they need.

What is wrong with the system is when residual symptoms remain with an in-range TSH because of a shortfall of thyroid hormone, then these patients should be referred to a different protocol where thyroid hormone levels take precedence.

The ideal would be to have thyroid hormone specialists within GP surgeries much like many have a diabetic, asthma or HRT specialist. Then patients could be assessed for which protocol would suit best. As you say politics dominate as guidelines are clear but not adhered to, and those who try risk facing isolation at best and being outed at worst. I think Bianco is biding his time but he is on our side. 

 

 

diogenes profile image
diogenesRemembering in reply toradd

I have a problem in the way TSH is used diagnostically in treated patients. In health, an individual's TSH covers about 50-60% of the reference range. We don't know whether this is at the low end or the high end. Not measured in health. So, a first question could be, is the recorded TSH in the patient's "healthy" ballpark or not? We can't answer this except by patient response. And this needs FT4 and FT3 to aid decisions. TSH alone will work diagnostically for lots of patients, bur for example, my wife has virtually no TSH, and is on T4 only: the doctor lets her get on with her life rather than interfering. There must be many people like this in the "satisfied with T4 therapy" group. Three different tests will give far more information as to T3/T4 supply and patient response. TSH is not entirely useless, but it's not as comprehensively useful as presently believed. Hence this group's existence.

helvella profile image
helvellaAdministrator in reply toradd

radd,

I'm not convinced that TSH suits millions. Restricting this reply to those who have been diagnosed and are on levothyroxine monotherapy.

When I first got involved in thyroid issues, I couldn’t understand why the only people involved were those who had been diagnosed in the recent past – maybe up to ten years.

One inference might have been that diagnosis and treatment had changed. Thus, long-term patients had got to a satisfactory state and were pretty much OK.

However, as each year passed, we saw more people who had never felt well. Some going back decades. But they’d been unable to progress in terms of treatment. The reality being that they had been refused things like more comprehensive testing, changes to dose, addition of liothyronine.

But some of them were old hands from when desiccated thyroid products (Thyroid BP and Thyroid USP such as Armour, etc.) were more widely used. They knew. They had felt awful being forced onto levothyroxine monotherapy. But had no voice.

And many were not there simply because the internet was not so accessible. A self-selecting subset were the ones discussing online.

I am now convinced that:

• Some hypothyroid people are lucky and get a period in which they truly feel well.

• Most hypothyroid people go through periods of feeling unwell to very unwell, despite diagnosis, despite treatment.

• Some hypothyroid people never feel well.

• Very few hypothyroid people feel well and adequately treated over the long term.

A lot of this is down to TSH.

• Must be within reference range regardless how the person feels.

• Can be anywhere in reference range with 0.5 being indistinguishable from 4.5 (or whatever the numbers for the lab).

• Any test in last twelve months seems to prove adequacy of treatment.

• No possibility of interference with TSH tests.

• Impossibility of liothyronine as so difficult to keep TSH within reference range.

I’m not convinced that the impact of poor treatment has been properly weighed on the scales of ethics and morality.

radd profile image
radd in reply tohelvella

helvella,

I’ll go further and say it goes without question that TSH, FT4 & FT3 be tested for all, as even those dosed by TSH, baseline  thyroid hormone levels could prove a useful tool at some stage. After all we know what Covid did to some peoples thyroid numbers. 

For those who respond well to being TSH dosed, this should continue as is a simple protocol for overburden GP’s who aren’t trained to understand the complexity of TFT results. 

For those whose residual symptoms remain, a whole new protocol would eliminate causes other than an incorrect dose with a GP’s tick box to including testing of the usual iron panel, FBC, but also nutrients and vitamins, and should further enquiry be necessary kidney function, liver tests, homocysteine, etc and even stool tests. Low free cortisol/DHEA should be taken seriously as can be an inhibiting condition even in the absence of adrenal disease, and used as a marker of progress. 

Only once it was established wellbeing couldn’t be gained by a TSH kept within range and all other causes eliminated, then the patient be passed over to the protocol number two overseen by a GP surgery specialist who doses primarily by thyroid hormone levels. 

The extra involved costs of the tests, and further employment would be easily offset by pre-empting conditions such as diabetes, fibromyalgia, heart disease, elevated BP, and the inability to work through inadequate Levothyroxine dosing. Illness cost the country a large fortune and its not just about the treatments costs. 

I dream ..

BB001 profile image
BB001 in reply toradd

'millions of patients are not well informed and have not received poor treatment because dosing by TSH has allowed then to become well'

I very much suspect that quite a lot of these patients fit into one of the following categories:

1) just don't realise how impaired their quality of life is on levothyroxine due to impaired cognitive ability

2) have accepted they are ill and have been treated and believe it when told their residual symptoms are due to something else, because their blood tests are normal/in range (usually only TSH).

3) think they're just getting old (I thought this age 28)

4) don't realise there is an alternative

5) just haven't got the energy to complain, or pursue a multitude of doctors until they find one who will listen.

Even though I am well educated it was years before I was aware there was an alternative thyroid treatment.

radd profile image
radd in reply toBB001

BB001,

Me too ☹️

Hoxo profile image
Hoxo in reply todiogenes

I had a frank exchange with Bianco on the issue of TSH and related it to my situation - suppressed TSH for many years. He kept saying TSH has to be in range until after my persistence he eventually admitted that we have to treat the individual.

TaraJR profile image
TaraJR

diogenes lynmynott in January, regarding everyone talking to each other, Bianco said on Twitter "An organized group of patients could contact the AmThyroidAssn, ThyroidBritish, ETA_Thyroid, LATS_Society and AOTA, and make that suggestion. I think this is a great idea and patient advocacy will only help to move this project forward. Finnish thyroid docs are most likely members of ETA. Nonetheless, the more enthusiasm the better."

Surely there must be some mileage in this?

lynmynott profile image
lynmynottPartnerThyroid UK in reply toTaraJR

Not sure we would be listened to in the UK. :-(

diogenes profile image
diogenesRemembering in reply toTaraJR

There should be better liaison and not so much chestbeating! I think it still the case that Bianco is in the same position as Toft in the UK was earlier. Authorative but at the moment, rather lonely figures. The mainstream (and downright opponents) will be slow to accept the new position. For one thing, practically, diagnosis and treatment regimes will be far more complex and time-taking if thyroid patients are treated personally rather than statistically. That is a disadvantage - doctor's time taken up on what they thought was a 5 min job.

BB001 profile image
BB001 in reply todiogenes

Think how much extra time doctors would get back in the future when we're not forever in their surgery with yet another illness. When I was on levothyroxine, I got to the point where I was ill with frequent recurrent infections: chest, ears, sinuses, eyes, pharyngitis, tonsillitis etc. These never cleared up without antibiotics. Often needing a second round of antibiotics. Trouble is, it isn't easy to demonstrate these infections are linked to hypothyroidism. Now I'm on T3 I'm rarely ill.

Hoxo profile image
Hoxo in reply toBB001

and prescribing statins, blood pressure medications, antidepressants…..

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