New paper published by our advisers: The long... - Thyroid UK

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New paper published by our advisers

The long awaited paper, Time for a Reassessment of the Treatment of Hypothyroidism has just been published in BMC Endocrine Disorders journal.

The team have other papers that they hope to get published so we look forward to seeing those.

Dr John Midgley told us that they are now leaving the strict science to pursue optimum diagnosis and treatment options for hypothyroidism.

Let's hope that these papers are cited in papers by other researchers as this is often a good way of them getting the attention they deserve by the clinicians.

To see the full text of the paper go here: bmcendocrdisord.biomedcentr...

I'd like to say a huge thank you to the team for persevering with all the research in order to help thyroid patients.

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'The team' that worked on this paper are: John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich and Rudolf Hoermann

Three out of the five are advisors to Thyroid UK thyroiduk.org/tuk/About_Us/...

If you click this link, it should take you directly to the full paper PDF bmcendocrdisord.biomedcentr...

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Well done Lyn - Shared on my Forum and also with GP. Thanks again - Great job!

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Thanks for all the hard work and publishing this paper. I’d like to add another dimension to the topic. It is always assumed that the patients in the studies have primary hypothyroidism. It’s not rigorous scientific evidence but I have noticed that patients on this forum who have a high TSH / low fT4 at diagnosis usually do well on levothyroxine. They might do better with a little liothyronine but nonetheless they respond reasonably well.

On the other hand, patients diagnosed with a normal thyroid profile or a mildly elevated TSH rarely recover without substantial doses of T3, more than 10 mcg daily. It is this first group that are represented in the combined therapy trials with liothyronine doses targeted to restore normal fT3 levels. (In half the studies insufficient liothyronine was given on the assumption that the dose ratio the patients swallow will be replicated in their blood – the researchers fail to understand pharmacokinetics – unsurprisingly all these studies failed to show a benefit for combined therapy).

We must look at the second group of patients who invariably have profound symptoms with marginal blood test results. This group is not represented in the trials, and certainly not treated with effective doses of liothyronine. I have set up a website ibshypo.com which analyses two other forms of hypothyroidism, namely Acquired Resistance to Thyroid Hormone (ARTH) and Subnormal TSH Secretion (a lowered set-point).

ARTH causes peripheral hypothyroidism with normal thyroid function test results. It is caused by endocrine disrupting chemicals (EDCs) which disrupt peripheral thyroid hormone action but have no effect on the pituitary (which has different thyroid hormone receptors). In the case of subnormal TSH secretion an unusually low TSH not only results in lower fT3 and fT4, but also reduces T3 levels particularly in organs such as the brain which is reliant on type-2 deiodinase. TSH stimulates T4 to T3 conversion, low TSH reduces this conversion. An additional factor is that TSH is not a single molecule but a group of isoforms with varying efeects on thyroidal secretion and deiodinase. Usually when TSH is lower than normal (for given fT3, fT4 levels) the TSH secreted is of lower potency. A TSH assay measures the quantity of TSH only, it doesn't tell you how potent the TSH is.

The thyroid cancer example in the paper is revealing. As noted above, a group of patients notionally diagnosed with primary hypothyroidism will be ‘contaminated’ with patients who actually have ARTH or subnormal TSH secretion. There patients require higher than normal fT3 levels to overcome these conditions. However, thyroid cancer patients would generally reflect the healthy population until they get the cancer, they are considerably less ‘contaminated’ with other conditions. After removal of the thyroid these patients recover on TSH suppressive doses of levothyroxine, enough to drag their fT3 up to normal levels. I suggest this is not the case for hypothyroid patients misdiagnosed with primary hypothyroidism.

These two conditions I've described have consequences for research studies. First, there is a temporal factor. Studies conducted before the body burden of EDCs increased (late 1970s) will have greater validity, there will be less statistical noise in the data which will not contain patients with ARTH. Perhaps this is why the replacement of NDT by levothyroxine was readily accepted, patients at that time had less need for T3. Secondly, research into hypothyroidism (meaning primary hypothyroidism) has been carried out without knowing the cause of each patient’s hypothyroidism – is it primary hypothyroidism, ARTH or Subnormal TSH? Except for studies with athyreotic patients no study has addressed this issue. A lot of thyroid research has reduced merit because the researchers have not listened to patients and sought to uncover the underlying causes of their illness.

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Grrr! Touch screens....

Apologies Jim I'm afraid that I have to confess I hit "like" by mistake while I was reading your reply....if that sounds mean then Im afraid it's because I still have considerable reservations about some of your theories and feel unable to commit to "like" at this stage. You deserve an explanation...

This post is about an excellent, newly published paper written by experienced researchers in the field. It deserves to be received with much respect and appreciation.

So, I'm not sure why (here) you feel the need to continue to bang the drum re either your theories or your new websites ...clearly others may feel differently.

Further, is it not the case that thyroid hormone resistance - or whatever term you have chosen to use - is (arguably perhaps) a rare syndrome and not a cause of hypothyroidism as you appear to suggest.. If I'm mistaken then feel free to correct me.

I understand this new project is important to you so I hope the launch of your website proves to be successful and informative.

I didn't intend to write this but fate - or rather poor finger control - decreed otherwise!

Best...

DD

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You can remove a "like"!

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Thank you helvella I couldn't work out how to remove it...feel really mean but "like" was not my reaction. The only option that dropped down was "Report".....clearly I must have missed something I didn't want to risk a second "like"

Sorry!

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You do EXACTLY the same thing as when applying the like.

Click on like once, it toggles the like ON. Click it again, it toggles it OFF.

A single member can only give one like. If you have already liked a post, it would NOT add a second like whatever you do.

(I have sometimes found the like symbol a bit slow to respond.)

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Thank you helvella ....very helpful.

Must remember when I use this device that it's touch screen is particularly sensitive.

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Yes, as helvella noted you can remove a like although it is not obvious.

My comments were meant to be a technical analysis to what is a very technical paper. I probably gave too much detail. The essential point I was trying to put across is that the cohort of patients that struggle to get well is different to the cohort used in most studies. Prospective studies select participants on the basis of a TSH above 10 and a low fT4, these patients almost certainly have primary hypothyroidism. In real life many of us who struggle to get well don't have such clear-cut blood test results, indicating our hypothyroidism might be due to other causes. It doesn't matter if my thoughts on what these other disorders are is right or wrong. The important point is that most research has targeted unequivocal primary hypothyroidism and not the patient group that is more difficult to treat.

I also point out that TSH is a group of molecules (isoforms) with varying attributes and potency. Consequently, great care needs to be taken when interpreting TSH figures. Measuring TSH is a little bit like weighing a sack of fruit without knowing what's inside, how many apples, pears, strawberries etc. It's informative to know the weight but it doesn't tell you much else.

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I'm afraid I don't have the qualifications/knowledge necessary to attempt "a technical analysis" of a paper written by such experts as the authors of this publication.

Conversely, you seem able to adopt a different approach...all views are interesting, informative and worthy of some attention.

I found this new paper to be of great value.

I'm just another TUK member seeking an effective way forward.....and hugely grateful for all the advice, support and direction that this forum has offered. It has enabled me to "hit the books" again and learn a little....and greatly improve my health.

Thank you for explaining your personal research, meantime however I hope we can agree to differ. You will be relieved to learn that question-time on matters RTH has come to an end.

Wishing you well

DD

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Sums it up nicely! But show it to a GP,let alone an endocrinologist, and they will likely roll their eyes. They rely on TSH for easy diagnostic cop outs and money saving healthcare management, the lead endo where I live told me that the nhs is only geared to stop you dying of hypothyroidism not optimise quality of life. The whole QOL thing is a tragic misnomer because it makes it seem more like a life style issue than a medical issue. We can be profoundly unwell on more or less any TSH level a clinician or lab or so called expert view could call normal, TSH is the one legged stool of thyroid function testing, at the very least tsh ft3 & fT4 are essential supports for managing thyroid disorders. The endocrinologists would have us believe that such blood tests aren’t useful, well that’s because they don’t use them to monitor us frequently enough to learn anything and have been brought up to believe that TSH is the guiding light. Ironically some endocrinologists are now realising the limitations of TSH TFTs so they disparage patients who are guided by it or question it and tend to think all TFTs are equally vague and indeterminate.

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Furthermore every NHS endocrinologist will always run TSH, fT3, fT4 for their private patients. Either all three are needed, or they are cheating their private patients.

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And that’s often just a cynical money spinning tactic. Again the lead nhs endo in my area claimed that private patients were sometimes mislead about the need for more complex testing strategies than the nhs would give; this is clearly because private consultations are mining a richer income stream. Actually the nhs is clinically negligent in this whatever the private clinical motivations.

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I agree, some private doctors promote more complex testing for profit. In the case of fT3 and fT4 the incremental cost is 92p each but I bet the consultant charges a lot more.

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Yup, that’s the nhs lab cost here, they should allow us to pay the extra if they don’t want to it’s £10 for each doing it online!!!

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Hi Hashihouseman

I have to disagree with your sentiments in your post. I think that the distinguished authors wrote the paper precisiely to give to GPs and Endocrinologists.

The paper sets out the case for non reliance on TSH in a well evidenced exposition. I think giving a copy of thsi to your GP or Endo is a good thing to do. Here are my reasons

Doctors have a duty under Good Medical Practice 2014.

Paragraph 8 states: "You must keep your professional knowledge and skills up to date".

Paragraph 16b states "In providing clinical care you must:provide effective treatments based on the best available evidence"

Paragraph 47 states "You must treat patients as individuals..."

Paragraph 57 states "The investigations or treatment you provide or arrange must be based on the assessment you and your patient make of their needs and priorities, and on your clinical judgement about the likely effectiveness of the treatment options".

The GMC Consent: patients and doctors making decisions together 2008 Para 5b states "... The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient... ".

In the case of Montgomery v Lanarkshire Health Board 2015 the Supreme Court said "It would ... be a mistake to view patients as uninformed, incapable of understanding medical matters, or wholly dependent upon a flow of information from doctors...The idea that patients were medically uninformed and incapable of understanding medical matters was always a questionable generalisation." THe Supreme Court also acknowlwedged the role of patient supprt groups by saying "it has become far easier, and far more common, for members of the public to obtain information about symptoms, investigations, treatment options, risks and side-effects via such media as the internet (where, although the information available is of variable quality, reliable sources of information can readily be found), patient support groups..."

Going back to GMP 16b the GMC did not define evidence as Evidence Based Practice. The term is explicitly left as simply evidence. Evidence is anything presented that supports an assertion.

The most common definition of Evidence-Based Practice (EBP) is from Dr. David Sackett. EBP is “the conscientious, explicit and judicious use of current best evidence in making decisions about the care of the individual patient". this feeds back to paragraph 47 above.

Evidence is not solely Randomised Controlled Trials. It can be any paper from any group. It does not have to be just one guidance document from one group of people.

This paper is well reaserched and written by experts in their field and published in a peer reviewed journal. It should carry a significant weight of evidence.

So the GMC and the courts expect doctors to listen to patients when they have knowledge of their condition and consider any evidence put in front of them.

So what happens when a doctors poo-poos the evidence provided by a patient?

The doctor is not complying with Good Medical Practice and the law.

The patient has to be resolute and start the complaints procedure.

The first step is to inform the doctor of her duties under GMP and the law and ask her to review her practice in line with the evidence.

if the doctor is stubborn, then I suggest the the patient starts the formal complaints procedure.

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Yup I started the formal complaint process. I do intend to use this as evidence. I was being somewhat snippy about the likely reaction from clinicians because it’ll take a complaint upheld to get them to act accordingly.

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I'm afraid that in most cases you may be right. I think that we as a group are in the position where formal complaints are necessary for some doctors. We have the evidence and the means to make formal complaints. I think that as group thyroid patients need the confidence to start the complaints procedure.

I prefer the graduated approach taking the complaint a step at a time. I also think Roosevelt quote is sort of appropriate -"speak softly and carry a big stick". our big stick is evidence such as the paper above, the GMC Codes of Practice and the recent case law. We just need to use them.

I think that as a group we have spoken softly but not got very far in the past. Times are changing for example with the recent work by TUK, TPA, ITT etc, working with the BTA on the T3 dossier and the recent research conducted some BTA members that says that doctors over rely on blood tests and dont consider signs and symptoms when they should so we need to push the GPs now.

Some will change when presented with evidence, some will need persuading and veiled threats of further action and formal complaints. Some will need to be taken down the formal complaints procedure.

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The research is interesting but probably ends up to be absolutely useless for us the patients.

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Hi kissemiss

the paper is very useful for patients. Please read my posts above in reply to Hashihouseman

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Very Interesting, thanks for posting! Draws attention to the uncertainties that exist and need for more research..... it’s a bit difficult to use to guide treatment as such as makes clear how challenging it is for both patients and their doctors, but as you say maybe will lead to better treatment in future!

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