Standards Inconsistent - Thyroid Symptoms

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shetur
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by shetur on Wed Jan 25, 2012 12:28 pm

Endocrinology's stance is dangerously wrong!

Would the panel of thyroid experts please consider the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of those with symptoms of hypothyroidism when there are counterexamples to T4-only therapy.

(A counterexample is a situation which fits the concept or premise of an idea but produces a different result. To be responsible, a scientist who finds a counterexample to his idea, must limit or abandon his idea as unworkable or not reliable.)


Counterexamples prove incontrovertibly that endocrinology's stance is dangerously wrong. Doctor’s continuance of practising in line with the T4-only treatment diktat for all sufferers of the symptoms of hypothyroidism is pernicious. The number of patient counterexamples on the Register at the present time is just under 2000 - the majority of whom are willing to testify to their experience.

If anybody reading this message feels they fit this category, please will you complete the 3 questions with either 'YES', 'NO' or N/A here http://www.tpa-uk.org.uk/register_of_co ... es.php[url][/url] . All responses are being collated online, and your email address (if you provide one) will be used ONLY to contact you at a later date should this becomes necessary.

Please will one of the Panel Experts be kind enough to respond to this request, for the sake of all those being left to suffer so unnecessarily on T4-only therapy?

Many thanks
Sheila Turner
http://www.tpa-uk.org.uk

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Dr Graham Beastall
Posts: 21
Joined: Wed Jan 18, 2012 5:36 pm
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by Dr Graham Beastall on Wed Jan 25, 2012 1:03 pm

Re: Pse read then answer why NHS won't check T3

Urine tests of thyroid hormone status are scientifically invalid and they produce misleading clinical information. They should not be used. There is not a health service in the developed world that advocates urine testing of thyroid hormones and there is not an internationally accepted scientific publication that provides authoritative evidence in favour of their use.

I will try to explain the above strong statement.

Everyone makes T4 as a storage form of thyroid hormone. We metabolise it in one of two ways - both of which remove one of the four iodine atoms. We either produce active T3 or biologically inactive RT3. At any point in time there is a balance between these two forms of metabolism. Whenever, anyone has a chronic or acute illness, has surgery or feels generally unwell it makes physiological sense to slow down metabolism and this is achieved in part by a switch in the balance of metabolism of T4 so that relatively less T3 and relatively more RT3 are produced. In severe illness these changes can be detected in serum T3 measurement but usually the effect is more minor. However, urine concentrates the excreted forms of thyroid hormone and so the effect of less T3 is more readily seen in urine, even in people with a modest degree of illness. The outcome is that a very high number of unwell subjects will have a 'low' T3 in urine when compared to a healthy population reference range. This is a normal and necessary response to illness it does not mean that they have hypothyroidism. As they get better so their urine T3 results will return to normal. People with 'low' T3 in urine do not require replacement T3.

The only biochemical tests that have value in the diagnosis of hypothyroidism are serum TSH and T4 (usually measured as FT4). Of these two the TSH is the most useful.
Neither T3 nor RT3 measurement add anything to the diagnosis of hypothyroidism - for the reason given in the previous paragraph.
Dr Graham Beastall
President of the International Federation of Clinical Chemistry and Laboratory Medicine

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Professor John Lazarus
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Joined: Tue Jan 17, 2012 3:16 pm
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by Professor John Lazarus on Wed Jan 25, 2012 1:12 pm

Re: Standards Inconsistent - Thyroid Symptoms

I believe that the guidelines from The British Thyroid Association together with the statement issued by The Royal College of Physicians of London are the appropriate documents to guide all clinicians in the management of hypothyroidism at this time. Of course medicine is a profession where continuing advances based on evidence are being made all the time and it is not possible to predict these. I would also add that 'the art' of medicine is an important consideration when managing hypothroid patients as well as the science.
Professor John Lazarus
Emeritus Professor of Clinical Endocrinology

Kiwi
Posts: 9
Joined: Tue Jan 10, 2012 2:02 pm
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by Kiwi on Wed Jan 25, 2012 1:47 pm

Poorly informed doctors and endocrinologists

I am hypothyroid and from my experience GPs and endocrinologists are not well informed about hypothyroidism. What can be done, as a matter of urgency to rectify this?

GPs take the TSH test as a YES or NO answer. If you are over 10, yes you get treated, under 10, no you don't and you won't even be told your thyroid is abnormal. This is the problem with the TSH test set at 10. It is being taken by doctors as rigid. If you have symptoms and are between 3 - 10 you will much more likely be given anti depressants.

GPs stop offering increases of T4 as soon as you are in the "reference range". They do not know that it is best to increase your medication, checking blood tests, to when you feel best (commonly held by those with hypothyroidism to be in the upper third of the reference range). As soon as you reach the reference range for blood tests you are told your thyroid is "normal" and any remaining symptoms must not be thyroid related. This is failing patients.

GPs do not give advice on how to take T4. I was given T4 and not told that food affects it's absorption. I had to find out how best to take it from the internet. This is failing patients.

Endocrinologists are also not up to date with knowledge. I have a partially suppressed TSH with mid level T4 and T3 results. The first endocrinologist I saw immediately wanted to reduce my medication based solely on my TSH results (I still had symptoms too), until I supplied more current information and guidelines saying it was ok. My impression of endocrinologists is that they mainly deal with diabetes and don't know detailed thyroid information.

All these doctors and endocrinologists were decent people, just poorly informed. If I had not researched my condition I would be on a low dose of T4 and feeling much worse than I do now (I still have problems and am about to start T4/T3 combo). I worry about patients who just take their doctors answers as the whole truth.

What can be done urgently to inform doctors about the best ways to treat thyroid patients?

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talkhealth
Posts: 1782
Joined: Thu Nov 04, 2010 3:29 pm
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by talkhealth on Wed Jan 25, 2012 2:03 pm

Re: Poorly informed doctors and endocrinologists

Hello Kiwi

Thank you for your post.

Our experts will answer any medical questions you may have but are not here to comment on your opinions about GP's, Endocrinologists or the BTA. I'm sure you appreciate our experts are giving their time to answer specific medical questions only.
talkhealth
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Kiwi
Posts: 9
Joined: Tue Jan 10, 2012 2:02 pm
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by Kiwi on Wed Jan 25, 2012 2:31 pm

Re: Poorly informed doctors and endocrinologists

Thank you for your reply.

From reading the posts currently here it would appear many people may have useful feedback for the NHS and their thyroid treatment. Instead of posting the complaints and/or feedback here would you be so kind as to point us all in the right direction and give a link or email address where we should send these concerns.

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talkhealth
Posts: 1782
Joined: Thu Nov 04, 2010 3:29 pm
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by talkhealth on Wed Jan 25, 2012 3:00 pm

Re: Poorly informed doctors and endocrinologists

Hello Kiwi

Here are a couple of links you may find useful:

NHS Choices web site - http://www.nhs.uk/Pages/HomePage.aspx

Feedback about the NHS and services - http://www.nhs.uk/aboutNHSChoices/Pages/ContactUs.aspx

NHS Complaints - http://www.nhs.uk/choiceintheNHS/Rights ... aints.aspx
talkhealth
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supressedtsh
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Joined: Wed Jan 25, 2012 4:11 pm
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by supressedtsh on Wed Jan 25, 2012 4:36 pm

Re: Standards Inconsistent - Thyroid Symptoms

If I said how I really feel about your response then I know that it will not be printed :evil:

I think the total opposite of what you have said Dr Lazarus is true. It is because doctors and endocrinologists went by the BTA and RCP guidelines that it has taken several years for me to be diagnosed and fully treated. If we are not diagnosed and treated early then it takes much longer to get better!

What I will say is that I am in good health now ..... as long as I stay well clear of any GP. Isn't it wrong that doctors are actually bad for our health?

Moggie
Posts: 2
Joined: Wed Jan 25, 2012 5:17 pm
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by Moggie on Wed Jan 25, 2012 5:39 pm

Re: Standards Inconsistent - Thyroid Symptoms

well done you. You are saying what sooo many other people are feeling.

Tillytan
Posts: 13
Joined: Sat Jan 21, 2012 5:12 pm
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by Tillytan on Wed Jan 25, 2012 6:42 pm

Re: Standards Inconsistent - Thyroid Symptoms

Cherry you speak for us all, but where is the point of having Thyroid tests when only TSH and FREE T4 are tested by the NHS, let alone the inability of Doctors to intererate test results.
As I am only taking T3 there is no point in me having further blood tests if FREE T3 is not tested, I might just as well hang onto my blood, as it may well be needed.
I have been classified as a "deluded hypochondriac" like so many of us, plus many other illnesses that are not a diagnoses.
How many of us have also been through surgery that would not have been required had we been diagnosed and treated with the appriate medication, and then gone on to suffer further from the surgery.

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