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BBC article by Dr Michael Mosley

lynmynott profile image
lynmynottPartnerThyroid UK
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Dr Michael Mosley from "Trust Me, I'm a Doctor" has written an article linking with the programme on this evening at 8pm. It's an excellent article and has some good comments about T3 and NDT - bbc.co.uk/news/health-38895877

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diogenes profile image
diogenesRemembering

It's a useful start for real progress to be made. I look forward to the programme but am a bit amused by Toft - if he believes what he says why is British thyroidology so antediluvian compared with elsewhere? It seems that he's seen the bandwagon and wants to get aboard and get kudos for doing so. The big stumbling block is the lack of meaningful trials to discover who would benefit from T3 supplementation. All the trials so far are worthless because satsfaction wih T3 addition was tested using a random sample of patients. If only 10-15% of patients who are poorer converters were mixed in with a large majority of good ones, then the minority's experiences are simply swamped statistically by the indifference (or dislike) by the majority. I pointed this out in detail in my last submission to the Scottish Parliament, and also the similar shortcomings in those trials which tried to link undetectable TSH with AF and osteoporosis. In this case, it may well be that normal (and especially particularly good) converters are adversely affect by undetectable TSH because they can be mildly overdosed (because of the crude 25 ug steps in T4 therapy), but that doesn't automatically apply to poor converters. Again the experience of the minority is swamped by the majority.

lynmynott profile image
lynmynottPartnerThyroid UK in reply todiogenes

I completely agree with you regarding the research! Regarding Dr Toft, I have often wondered if the fact that he has changed his opinion is down to the fact that he doesn't work for the NHS any more and he feels he can be more open about things. Perhaps he's seen more patients that have improved on T3 now....

Lintably profile image
Lintably in reply tolynmynott

Dr Toft changed his mind whilst still an NHS doctor. As I am one of the early patients he tried in the combo therapy I can shed some light on why he changed. He gave a talk about it. He said he initially experimented on himself. A some stage he started giving the combo therapy to patients. He then reversed his opinion based on what he saw in those patients. He didn't mention how many patients it took to convince him that the combo therapy had merit.

Rapunzel profile image
Rapunzel in reply todiogenes

'It seems that he's seen the bandwagon and wants to get aboard and get kudos for doing so.'

If he gets some and you don't get garlanded heaps, diogenes, there's no justice in the world. That he knows T3 costs pennies to make and has not raised his head above the parapet to query this with the powers that be speaks volumes about his interest in resolving the minority's misery of the 'levo for one and all' dictat

Jose651 profile image
Jose651 in reply toRapunzel

👏👏😘 Rap.

Rapunzel profile image
Rapunzel in reply toJose651

😘 Jose

diogenes profile image
diogenesRemembering in reply toRapunzel

Trust him! He's a doctor!

TSH110 profile image
TSH110 in reply toRapunzel

Rapunzel he admitted it was horribly overpriced here and will be the future of treatment as combination therapy

I'm happy with my NDT

helvella profile image
helvellaAdministrator in reply todiogenes

From personal experience, I very much agree that 25 micrograms is too big a step.

That is why I am currently taking 112 micrograms.

I found 100 not enough, 125 too much, and alternating 100 / 125 too uneven.

Few medics seem to have realised that Teva is now available in 12.5 micrograms. (Even then, because it contains acacia, some people would not be willing or able to use it.)

lynmynott profile image
lynmynottPartnerThyroid UK in reply tohelvella

I heard from someone today that their go refused to prescribe the 12.5 Teva because it was more expensive than cutting a 24 in half!

RedApple profile image
RedAppleAdministrator in reply tolynmynott

Why am I not surprised to hear that! I predicted (to myself) that would happen. We're not worth those few extra pence :x

helvella profile image
helvellaAdministrator in reply tolynmynott

Last appointment I had was just before it became available. I told my (new) GP that I was taking the 100 I expected her to prescribe plus 12 from a European country I sourced myself. She was perfectly content with that.

Next appointment I intend to ask for 12.5 to be added to my prescription.

Now, do we know the price of 12.5 Teva? Last I looked, BNF said 50 and 100 were £2.02 and 25 were £4.04 (28 tablets in each case).

Considering the manufacturers say that they do not make their tablets to be split, why does a doctor think it right to do so? (The split line present on some is just a design feature and does not indicate that it can or should be split.)

RedApple profile image
RedAppleAdministrator in reply tohelvella

I have heard that the split line is a default thing in tablet making to enable people to break tablets in half for easier swallowing. Splitting in half but taking both halves in the same dose is very different from splitting for separate days dosing.

Lintably profile image
Lintably in reply tohelvella

You can get the German Sandoz brand Liothyronine in the UK. It is in 25mcg and 5 mcg tablets. They are large scored tablets that are easy to break into the 12.5 dose. Mine is breadcrumbed as 25mcg 3 times per day. I break them in half or not as I choose.

The prescription is handwritten by the GP and I get it from Boots. The UK version doesn't come in 25mcg doses so they can't substitute. Your pharmacist writes to the health board for permission to use the alternative product. It is a no brainer for them as the 25mcg tablets come in a 30 tablet box for about €20.

I have been on it 3 months. I've lost a stone and feel miles better!

helvella profile image
helvellaAdministrator in reply toLintably

Just to make sure I understand, and others can follow in your steps if they need to, does your prescription state "Sandoz liothyronine 25 micrograms"? Or does it not include maker's name?

Lintably profile image
Lintably in reply todiogenes

I am one of the patients that Dr Toft started on T3/T4 combo therapy after he changed his opinion. He was still an NHS doctor at the time. Although he is no longer an NHS doctor I recently got in touch with him as I seem to finally have a breakthrough in treatment by switching to the German T3 tablets from Sandoz. This was done via and NHS prescription. It required approval from the health board, which went smoothly as the cost is about €20 for 30 tablets. Each tablet is 25mcg farther than the Mercury format of 20mcg.

I had a reply from Dr Toft yesterday. He said

"The cost of T3 in this country is because a sole UK supplier is profiteering and should be taken to task by the Competition and Marketing authority as they are abusing the NHS. The Pfizer and Sandoz forms are probably better than the UK form. The important news is that you are feeling better."

What I find unclear is why unlike other drugs there is a sole supplier agreement in place. Although I have been able to access the Sandoz version now, it really shouldn't require this workaround. Seems simpler for the NHS to allow other cheaper generic Liothyronine without faffing about that to pursue the profiteers. Simply stop using them!

DavyB profile image
DavyB

Saw this on the BBC website last night, looks good :) Nice to see some Doctors are now looking more deeply into T4/T3 relationship at last.

Was going to post link today myself, so well done :)

hachiko profile image
hachiko

Thanks for posting!

startagaingirl profile image
startagaingirl

Very good article, clear and easily understood. In this case the typical bbc need for balance is also good in it's comment on uk ranges and NHS treatments. Should be an interesting programme. I have a lot of time for Dr Mosley, he digs into all types of things and isn't afraid to go against the prevailing fashion/norms/NHS dogma.

Thank you for posting

Musicmonkey profile image
Musicmonkey

Agree with this article and good to see Hypothyroidism get some badly needed attention. However, what on earth does he mean by his last sentence? If you don't respond to medication, try lifestyle changes? If taken at face value, patients may abandon medication and accept their poor health and give up looking for answers.

I am aware though that we don't have all the answers yet.I have faulty gene DIO2 am self-treating a combo of T3/T4 and feel much better, but there is still room for improvement. Yet according to my stats today TSH 0.01, T4 9.15 (12-22) and T3 6.5 (3.1 - 6.5) I should be well and symptoms largely absent. I still need answers and I guess many others do too.

Looking forward to the programme this evening.

bluebug profile image
bluebug in reply toMusicmonkey

I think the program will be a disappointment and won't reveal more than the article.

Musicmonkey profile image
Musicmonkey in reply tobluebug

I agree bluebug I didnt mean to suggest that we would discover anything new, but it is good that the condition gets more press.

bluebug profile image
bluebug in reply toMusicmonkey

It wasn't as bad as I expected. - Then I'm biased as he was flicking through this forum.

He did say at the end you should investigate further and improve your diet.

RedApple profile image
RedAppleAdministrator in reply tobluebug

I've heard it's about 5 minutes air time out of the hour slot. But this is, and has always been a hidden illness, so anything is better than nothing!

helvella profile image
helvellaAdministrator in reply toRedApple

Already at 20:20, unwittingly, a cause of hypothyroidism has been discussed - arsenic.

Environ Res. 2015 Apr;138:154-60. doi: 10.1016/j.envres.2015.02.001. Epub 2015 Feb 23.

Association of hypothyroidism with low-level arsenic exposure in rural West Texas.

Gong G1, Basom J2, Mattevada S3, Onger F4.

Author information

1F. Marie Hall Institute for Rural and Community Health, Texas Tech University Health Sciences Center, Lubbock, TX, USA. Electronic address: gordon.gong@ttuhsc.edu.

2F. Marie Hall Institute for Rural and Community Health, Texas Tech University Health Sciences Center, Lubbock, TX, USA; Department of Family and Community Medicine, Texas Tech University Health Sciences Center, Lubbock, TX, USA.

3Department of Internal Medicine, University of North Texas Health Science Center, Fort Worth, TX, USA.

4Department of Family and Community Medicine, Texas Tech University Health Sciences Center, Lubbock, TX, USA.

Abstract

It has been reported recently that a higher airborne arsenic level was correlated with higher urinary arsenic concentration and lower serum thyroxin level among urban policemen and rural highway workmen in Italy. The current study was to determine whether exposure to low-level arsenic groundwater (2-22µg/L) is associated with hypothyroidism among 723 participants (118 male and 267 female Hispanics; 108 male and 230 female non-Hispanic whites, NHW) living in rural West Texas counties. Arsenic and iodine levels in their groundwater used for drinking and or cooking were estimated by the inverse distance weighted (IDW) interpolation technique. Groundwater arsenic was ≥8µg/L in 36% of the subjects' wells while iodine concentration was <1µg/L in 91% of their wells. Logistic regression analysis showed that arsenic in groundwater ≥8µg/L and cumulative arsenic exposure (groundwater arsenic concentration multiplied by the number of years living in the current address) but not groundwater iodine concentration were significant predictors for hypothyroidism among Hispanics (p<0.05) but not NHW after adjusting for covariates such as age, gender, annual household income and health insurance coverage. The ethnic difference may be due to a marginally higher percentage of Hispanics (p=0.0622) who lived in areas with groundwater arsenic ≥8µg/L compared with NHW. The prevalence of hypothyroidism was significantly higher in Hispanics or NHW of this rural cohort than the national prevalence. Measures should be taken to reduce arsenic in drinking water in order to prevent hypothyroidism in rural areas.

Copyright © 2015 Elsevier Inc. All rights reserved.

KEYWORDS:

Hypothyroidism; Low-level arsenic exposure; Rural Texas

PMID: 25721242

DOI: 10.1016/j.envres.2015.02.001

ncbi.nlm.nih.gov/pubmed/257...

TSH110 profile image
TSH110 in reply tohelvella

I just got a big wallop of arsenic tonight doing the worst kind of rice cooking and brown too! Was a bit shocking but good to know

helvella profile image
helvellaAdministrator in reply tohelvella

I should have explained, for anyone who didn't see the program:

It was a section on the arsenic content of rice. The take-home message is that you can reduce the amount of arsenic in your rice by soaking it in cold water overnight, then cooking it in plenty of water - about five times the volume of the rice. Which, of course, is not what you get in a take-home meal... :-)

Spareribs profile image
Spareribs in reply tohelvella

tosh

spidernose profile image
spidernose in reply toMusicmonkey

can I ask where you purchase your combo from? I want to try it

Spareribs profile image
Spareribs

Hands up who spotted his sparse eyebrows last week?

TSH110 profile image
TSH110

Quite a good piece. We should request him to do a more in depth programme about all the issues and get some of us on it!

mummyG profile image
mummyG

What makes me mad!! And just shows how we pay thru the nose in this country is the cost of t3 How can it cost £300 here for a month or two. Yet I paid 2 Euros in Corfu for each packet ! What do we have on our foreheads. " mug me I'm British". Honestly !

mariegal profile image
mariegal

I am watching Trust me im a doctor. Very interesting but as per usual it seems like cost is an issue but interesting to hear someone say that work needs to be done.

mummyG profile image
mummyG in reply tomariegal

£300 here and 2 euros in Corfu!! How ??

It's so wrong here so wrong !!!

Makes me so mad!!

lynmynott profile image
lynmynottPartnerThyroid UK

Just watched it. Really pleased that it showed NDT and the question of the placebo effect was answered beautifully by Jo Parker. Well done to the Midlands Support Group for getting this aired!

helvella profile image
helvellaAdministrator in reply tolynmynott

Did Dr Mosley know quite how much Jo takes?

lynmynott profile image
lynmynottPartnerThyroid UK in reply tohelvella

Don't know...

humanbean profile image
humanbean in reply tohelvella

How much? Don't keep us in suspense. :) I don't know who Jo is.

Spareribs profile image
Spareribs in reply tohumanbean

nor I - but good luck to her :D

Spareribs profile image
Spareribs in reply tolynmynott

and I got a screenshot on where he was researching - see my profile background pic - ah ha!

lynmynott profile image
lynmynottPartnerThyroid UK in reply toSpareribs

Yes,I saw that and punched the air! 😄

Spareribs profile image
Spareribs in reply tolynmynott

me too - still grinning :D x

lynmynott profile image
lynmynottPartnerThyroid UK in reply toSpareribs

Did u see he was reading our "Getting a Diagnosis" document in our website? 😄

Spareribs profile image
Spareribs in reply tolynmynott

scrolled through... yes :)

Spareribs profile image
Spareribs in reply tolynmynott

healthunlocked.com/thyroidu...

diogenes profile image
diogenesRemembering in reply tolynmynott

I thought Mosley did a reasonably good job. But Toft nice reasonable old fellow that he was, had the impact of wet blotting paper. We aren't going to progress politely I fear. And I'm not polite by nature! Yorkshire of course!

Spareribs profile image
Spareribs in reply todiogenes

probably not - but it IS out there now in Mainstream...

dare your 'reasonable' Yorkshire wit admit to a small step in the right direction? (I'm trying to be positive here & why not.. amongst all this pessimism? that we've all seen before, of course)

I saw & heard you with enthusiasm at the TUK conference .. and now - hmmm.... please don't be alacking!

OK there's much research to be done, so, so much - how many times have I heard that one!

Steady now.

diogenes profile image
diogenesRemembering in reply toSpareribs

Not polite isn't being rude! It's saying things straight and not wrapping everything up in language that leaves the listener grouping for what was actually said (so as not to ruffle professional feathers). Lots of research is needed and changes made. I'll list a few in no particular order:

1) Improve reporting of placement in normal ranges by including a "percentage up the scale" measurement as well as the number itself, so as to correct for the various ranges set out by different instruments from different manufacturers.

2) Measure FT4 and FT3 in all healthy humans (once only needed), archive and use results as a target for treatment if dysfunction hapens later, instead of proceeding blindly without knowledge of original healthy levels.

3) Re-educate clinicians re the statistical approach to using the reference range in diagnosis rather than the "goalpost" diagnosis as o whether ones in the normal range or not. Shoehorning patients into the range and then automatically saying OK will not do. "Computer says Yes or no" isn't a substitute for treating the patient as an individual.

4) Abandon TSH as a diagnostic for treatment modalities on T4 or combination, and substitute with FT3 (do not measure if nonthyroidal illness is alo present). Leave TSH to its role in detection of hypothyroidism and compliance in treatment.

5) Reduce the upper limit for TSH in such detection for more timely treatment. This questions why there is such a long "tail" in the upper TSH range and asks whether such people are not yet hypo but under thyroid strain.

6) Use FT3/FT4 ratios in health as a guide to potential need for combination therapy in dysfunction.

7) Give patient presentation a much greater role than at present and relegate biochemical testing to a supporting rather than defining role when appropriate.

8) Get the cost of T3 down to a sensible level by licencing cheaper producers.

9) Perform properly designed trials to determine responses to combination therapy, AF and osteoporosis by first stratifying patients according to their FT3/FT4 ratio under T4 therapy.

With such a long list, one wonders when and if it will all come about. There are several more items but my wrist aches.

RedApple profile image
RedAppleAdministrator in reply todiogenes

Absolutely! And a thousand million thank-yous for all your work Diogenes.

When your wrist has recovered, please do add the other items to the list :)

lynmynott profile image
lynmynottPartnerThyroid UK in reply todiogenes

I'm a "one thing at a time" girl now. Tried campaigning for everything all at once and it didn't work. :-)

Spareribs profile image
Spareribs in reply todiogenes

Thank you for the wonderful list, I sincerely apologise if I came across a bit tert... I was a tad excited! Happens... :D

RedApple profile image
RedAppleAdministrator in reply toSpareribs

Spare, of course it was brilliant to see it covered on national TV for the very first time. Those of us that are so heavily involved in this, probably can't see it from the perspective of the general viewing public. What did they make of it I wonder.

I sincerely hope that those few minutes of air time won't mean that the whole scandal of diagnosing and treating thyroid disease has now been covered, and it can be put back into the dark cupboard in the corner, never to see the light of day again.

lynmynott profile image
lynmynottPartnerThyroid UK in reply toRedApple

Hope not. I'm approaching journalists today.....

Spareribs profile image
Spareribs in reply toRedApple

I have a feeling we have a few thousand more members maybe? I'm so busy at work I don't tend to keep up as much, and I just felt this was such a significant step in the right direction, it must be celebrated! I think he may have "covered" it a bit before - just the basic symptoms 'tho J :D

from acorns......

SlowDragon profile image
SlowDragonAdministrator

Also this further article on "Trust me I am a doctor"

bbc.co.uk/programmes/articl...

I note with interest that the prime link for more info is Thyroid UK 😀

helvella profile image
helvellaAdministrator

I agree - you can't expect to be able to use the same techniques on microwave rice or similar.

Perhaps, as this paper says, the most important step would be declaring arsenic content. That alone might encourage producers to reduce arsenic content.

There are many papers and articles about the same basic issues.

Food Addit Contam Part A Chem Anal Control Expo Risk Assess. 2014;31(8):1358-66. doi: 10.1080/19440049.2014.933491. Epub 2014 Jul 4.

Arsenic speciation in rice-based food for adults with celiac disease.

Munera-Picazo S1, Burló F, Carbonell-Barrachina ÁA.

Author information

1a Department of Agro-Food Technology, Food Quality and Safety Group (CSA) , Universidad Miguel Hernández de Elche , Orihuela , Alicante , Spain.

Abstract

Celiac disease (CD) may affect up to 1% of the Western population. It is a disease whose diagnosis has been made mainly in childhood, but now the profile has changed, with one out of five newly diagnosed individuals being over 65 years old. The only treatment for this population is a gluten-free diet. Therefore, the objective of this study was to analyse the occurrence of arsenic (As) in gluten-free products, basically those rice-based, intended for celiac adult consumers. The current study demonstrated that these rice-based products contained important contents of total arsenic (t-As) (up to 120 μg kg(-1)) and inorganic arsenic (i-As) (up to 85.8 μg kg(-1)). It was estimated that the contents of t-As and i-As in rice used as the main ingredient of these foods were as high as 235 and 198 μg kg(-1), respectively. The estimated daily intake of i-As was 0.46 and 0.45 μg kg(-1) bw in women and men of 58 and 75 kg of body weight (bw), respectively. These values indicate that a health risk to these consumers cannot be excluded. Finally, legislation is needed to delimit the safety intake by health agencies and to improve the labelling of these special rice-based foods for celiac adult consumers. The label should include information about percentage, geographical origin and cultivar of the rice used; besides and if companies want to clearly prove the safety of their products, the exact content of i-As should also be included.

KEYWORDS:

Oryza sativa; dietary exposure; food safety; gluten-free food

PMID: 24919988

DOI: 10.1080/19440049.2014.933491

ncbi.nlm.nih.gov/pubmed/249...

silverfox7 profile image
silverfox7

Well I was pleasantly surprised that some things were said, tall trees from acorns comes to mind but I'm furious about the attitude re the cost of T3! The facts are aired about how in the U.K. it's more expensive so what do we do, (not us) accept the eanation that it's expensive to make and the answer is we can't have it. Why isn't pressure applied to make them reduce the cost? We know actual research is expensive and they are allowed to claw back a reasonable amount but once it's here and then keeps rising in my mind shouts fleeced so why can't the powers that be see that? 1 hope there is some good press coverage to follow. I know the facts will be well presented but it doesn't mean it will automatically all be passed on.

charliecooper profile image
charliecooper

Only just seen the programme.

The comment of "£300 for two months for T3" all depends of course on how much someone is taking, individuals take different amounts of course.

And the other cost for NHS when someone is taking thyroid medication is the medical certificate for exemption of prescription costs, wonder if this has an impact on doctors decisions?

lady_eve profile image
lady_eve

It's a good article, but I am (as ever) left wondering how "strong" an evidence base is needed before NDT becomes accepted as an alternative to levothyroxine ...

Lintably profile image
Lintably

I am now receiving the German T3/Liothyronine from Boots. It is in 25mcg tablets that are larger that the UK T3 and scored. It comes in a box of 30 tablets. These are in three foil packets with individual spaces for each tablet (similar to the way ibuprofen tablets are usually packaged). This is ideal for travel as I can keep a foil of 10 tablets in my purse.

This prescription must be handwritten. The pharmacist must write for approval to use the alternate supplier. As 30 tablets cost only about €20 euros this didn't present a problem. He was able to highlight the cost saving.

Most importantly I feel better and have lost a stone in the 3 months since the change. I had blood drawn yesterday and will be interested in seeing if there are changes.

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