Concern over inappropriate diagnosis and treatment of primary hypothyroidism

More and more people are being inappropriately diagnosed and treated for underactivity of the thyroid gland (known as primary hypothyroidism), warn doctors in an editorial published on bmj.com.

Hypothyroidism is caused by insufficient production of thyroid hormone by the thyroid gland. It affects about three per cent of the population and is usually treated in primary care. Blood tests are essential in confirming the diagnosis of hypothyroidism.

But doctors at the British Thyroid Association are concerned that, in recent years, increasing numbers of patients with and without confirmed thyroid disease have been diagnosed and treated inappropriately with thyroid hormones.

"This is potentially an enormous problem, given that in any one year one in four people in the United Kingdom have their thyroid function checked," they warn.

The Royal College of Physicians recently set out clear guidance for the diagnosis and treatment of primary hypothyroidism in the United Kingdom, so why have these problems arisen, ask the authors?

Hypothyroidism is common and is becoming more prevalent because of increased life expectancy and an ageing population, they explain. Thyroid hormones also affect most organs, so hypothyroidism presents with symptoms that can mimic other conditions. This can lead to an incorrect diagnosis which could expose some patients to the harmful effects of excess thyroid hormones, while other serious conditions may go undiagnosed.

Information available on the internet and media interest in alternative modes of diagnosis and treatment of hypothyroidism, have also caused an increase in requests for inappropriate investigations and non-standard treatments, as well as referrals to non-accredited practitioners, they add.

These factors have led to a rise in awareness and confusion about hypothyroidism, and they have increased the workload in primary care.

The authors stress that, in most cases, the management of primary hypothyroidism is straightforward and should be undertaken in primary care.

But they suggest that if wellbeing is not restored despite normal concentrations of thyroid stimulating hormone, it is important to exclude other conditions as the cause of ongoing symptoms. If no obvious cause is found the patient should be referred to an accredited hospital endocrinologist or general physician.

Advertisement

Comments

  1. P Lynch P Lynch United Kingdom says:

    Available medical evidence to the contrary has been ignored in the new guidelines issued by the Royal College of Physicians. Because of this, the Royal College is currently reviewing all the evidence, references etc sent to them by doctors, scientists and members of the public in response to the new guidelines.

    In 2007, a General Medical Council Panel, GMC v G. Skinner, Fitness to Practise, declared that, "The Panel could not be satisfied, on the basis of all the evidence presented that a therapeutic trial of thyroxine therapy was inapropriate for a patient with clinical features of hypothyroidism and with thyroid function tests within the reference range." (General Medical Council: 5th September, 2007, (P3)).

    Also, on Page 68 of the 2006 BTA Guidelines it states, "Routine thyroid function tsting has been available for more than thirty years.  Therefore, it may seem surprising that the quality of evidence to support the recommendations in these guidelines is generally poor.  The main reason for this finding is that the early studies that were used to assess the value, validity and effectiveness of thyroid function tests in a variety of clinical situations were performed before the requirements for evidence based medicine were adopted.  There is a real need to conduct new studies that conform to the rules of evidence based medicine in order to provide answers to some common but contentious issues in the use of thyroid function testing."
    UK Guidelines for the Use of Thyroid Function Tests (July, 2006)
    The Association of Clinical Biochemistry, The British Thyroid Association and The British Thyroid Foundation.

    These are three of the Associations as co-authors of the Royal College of Physicians guidelines!

    Many thousands of patients in the UK have regained their health after being prescribed thyroid hormone when their thyroid blood tests were within the reference range, but their symptoms have pointed to hypothyroidism.

    How are we to have faith in a system where doctors themselves say that the quality of evidence to support the recommendations is generally poor?

  2. Sheila Turner Sheila Turner United Kingdom says:

    The BTA has formulated and foisted a sham consultation process onto the RCP, and it must be exposed for its duplicity. It has ignored swathes of patients who have repeatedly been unable to prosper on just levothyroxine; personal experience indicates that this RCP, BTA protocol is misguided in the extreme and it will continue to cause inadvertent deaths in unsuspecting patients, improperly advised as to the alternative therapies.

    The RCP, BTA joint statements violates the guideline authorship standards of care in "Concise Guidance to Good Practice" also written and promulgated by the RCP. This guideline adversely affects the health and well being of those patients who have non-thyroid deficiencies in the peripheral metabolism of T4 to T3 or the hormone reception of T3, and it violates the protocols found in the "Concise Guidance to Good Practice" by the Clinical Effectiveness and Evaluation Unit of the RCP: I will list these violations separately.

    1. G/lines should be discrete so they can be considered in isolation. the diagnosis is not complete, the therapy is not adequate.
    2. The 'conclusions' don't improve quality of patient care.
    3. Lack of definitions doesn't clarify. However, the certainty that was produced by a wide variation of practices existed because there were a wide variation of causes, most ignored in the guideline.
    4) Encouragement of objective methodology is misdirected. This only deals with thyroid gland deficiencies, not deficiencies existing between the thyroid gland and the symptom producing cells.
    5) Literature search could not have been complete or was selective as there are many articles on peripheral metabolism and peripheral cellular hormone reception
    6) There are no references, particularly for the lack of therapy for those with 'normal' hormone levels and continuing symptoms.
    7) No evidence offered, so it's not available to the reader, hence we cannot "decide on the reliability of the guidline". By the logic in court cases dealing with enforced guidelines, they are not voluntary, but mandatory.
    8)There was not patient representation.
    9)…no stakeholder involvement statement
    10)…no list of members or their areas of expertise.
    11)…no rigor in the development with respect to patient with deficient peripheral metabolism or deficient hormone reception.
    12)…no criteria for selecting evidence
    13) With regard to post thyroid deficient patients, the health considerations were not made or addressed. In fact for them, the statement is quite depraved - insuring them a life of misery.
    14) The conclusions do not correspond to the statement body of text.
    15) There is evidence of potential funding issues and consequently the lack of independence.
    16) It doesn’t meet the RCP goals - to serve patients well.
    17) It doesn’t champion the values or ethics of the medical profession regarding post thyroid deficient patient
    18) For these patients, the guideline makes diagnosis and treatment worse.
    19) It is not patient centred and doesn’t support ethical physicians
    29) For those patients, it is a stain on the name of RCPs.
    21) Myth of Physician Independence

    A comparison between the objectives of the RCP with the patients’ experience should be demanded.

    The RCP, BTA has failed to consult those patients in diametric opposition to their guideline in the UK e.g. Thyroid Patient Advocacy-UK (www.tpa-uk.org.uk) and Thyroid-UK (www.thyroiduk.org) to mention just two, who represent tens of thousands of UK patients. They have not been approached for their views. The RCP, BTA has, in fact, tried to discredit and denigrate those very people who oppose them, first, by silence, then by riding roughshod over their desperate need for a cure, and to use their 'collective' power to terrorise doctors into submission, even when these doctors know that the suggested protocol is wrong.

    There is only one conclusion – once this statement goes beyond the scope of ‘primary hypothyroidism’ and trespasses upon exo-endocrine functions, symptoms, and therapies, it contradicts medical science. The problem then becomes this question, “…what human frailties created a contradiction with well-known and established medical science?” Indeed, what has caused the failure to recognise the failure of the levothyroxine sodium only therapy for the past half century?

    Article 29: Magna Carta “No Freeman shall be taken or imprisoned, or any other wise destroyed . . . but by lawful judgement of his Peers, or by the Law of the Land.”

    Patients with symptoms of hypothyroidism are being destroyed without proper judgements.

    The earliest case occurred in the 17th Century. It was the RCP (London) –v- Dr. Bonham. The RCP didn’t want non members practicing medicine in competition so they charged him with unlawful practice of medicine in spite of his greater training than most practitioners of the healing arts of that day - including the fellows of the RCP. After imprisonment by the RCP, the Archbishop secured his release. Dr. Bonham and his attorney filed a suit against the RCP for false imprisonment. Chief Justice of the Court of Common Pleas, Sir Edward Coke, found the RCP couldn’t be a judge in matters in which it had a financial interest.

    Coke believed that no man, even the king, is above the law. That should be the case today.

    In a survey of 1500 hypothyroid patients undertaken by Thyroid Patient Advocacy-UK (TPA-UK) in 2005-2006, the dissatisfaction of many patients is highlighted. This survey has very good credentials that it points to inconsistencies within the data presented by the BTA as being 'definitive'. Why has the RCP and BTA et al., chosen to take no account of these statistics when a copy was sent to Professor Anthony Weetman in 2006 (then President of the BTA) and every member of the BTA Executive Committee. No response or acknowledgement has ever received from them. This hypothyroid survey should be held up as valid, contradictory evidence to the RCP/BTA joint guideline.

    Of 1500 respondents to this survey, 93.8% (n=1407) had not been told of medicines other than L-thyroxine by their medical practitioner. 38.8% (n=768) felt they had “not been dealt with very well” or “not very well at all” by their doctor whilst seeking a diagnosis of their symptoms; 233 (15.5%) had given up paid employment; 300 (20%) had taken time off work as a result of thyroid illness; 500 (33.3%) felt their close relationships had been affected by thyroid illness and 632 (42.1%) had stopped or altered their exercise routines as a result of their symptoms. When asked of those patients undergoing L-thyroxine therapy, “Do you feel that you have fully regained your optimal state of health?” 1176 (78.4%) Answered “NO”. What did the BTA say in reply –ABSOLUTELY NOTHING!

    Needless to say, the BTA chose not to pass this information to the RCP or anybody else. One wonders why.

  3. L Maguire L Maguire United Kingdom says:

    I would like a real explanation as to why, after over twenty years of suffering with hypothyroidism and being diagnosed as having various serious illnesses which were treated by some very potent medications, whilst taking Levothyroxine in varying dosages over the years, I feel so much better after just three weeks of adding T3 to the Levothyroxine. This cannot be explained away easily, nor can it be denied as so many people have found this to be the case.
    As a full tax and National Insurance payer, I cannot get the medication I need to optimise the state of my health. I had my state benefits withdrawn after a medical examination even though the doctor stated on the form that it was his considered opinion that I needed at least another 6 months in which to recover. A fact my own GP had also stated.
    Since this is the case should I not then be reimbursed for all the money this government have fraudulently taken from me in tax and national insurance contributions over the years?
    If this medication had been made available to me through the National Health as it should have been, I would have taken less time off work with illnesses which can only be due to the hypothyroidism.
    I want to know why I am being refused the health care that I am entitled to.
    I would also like to know why there is so much pressure on GP's and Endocronologists to treat to the guidelines, which, in my honest opinion, are the worst in the world, and not treat the symptoms.

    The refusal to have full scale research into this, and look at all evidence for the use of dessicated thyroid/T3 in hypothyroidism, looks like someone has something to hide. There is a wealth of supporting evidence available to support this, which the BTA, RCP et al insist on denying. There are very good doctors out there who are punished because they only want the best treatment for their patients and not what is best for the RCP, BTA, Drug Companies and so on and so forth.

    Isn't it time we were given our rights back?
    Isn't it time we were given our health back?
    Why should we have to fight for treatment which has been proven for over a century?

    I find it amazing that in his day and age these people who profess to be EXPERTS, are so lacking in knowledge and information and so uncaring about life.
    These very people took a hypocratic oath. I suggest they read what that means as they seem to have forgotten.

    • Teresa Nevins Teresa Nevins United States says:

      I am from the USA and let me tell you, we have the very same problem. I was ill for 14 years with hypothyroidism (really from five years old) I couldn't function on T4. I am the one that did research and found out I needed T3. I found a doctor on a website that would prescribe it. Then when he left my HMO the next doctor refused to let me have that amount do to my TSH test. Etc. etc. etc. The same old story. I went to 4 endos and they never once suggested T3 in any form! 14 years of my life wasted; it was torture! I couldn't work; financally we will never recover. We are barely hanging onto our house. These doctors ruined my life! So I am back on a higher dose, but I am afraid my present doctor will not allow me to stay on it. So I have already been searching around for a new one to take her place just in case. I found a nurse practicioner at a low-income clinic that will use symptoms instead of tests to monitor it.

  4. Julie Rayner Julie Rayner United Kingdom says:

    I have been diagnosed with an underactive thyroid - after undertaking private tests - the NHS blood tests showed up as "normal".  I am NOT normal - I cannot function - I know my own body and when your own GP says there's nothing wrong what are you supposed to do?  It is about time GP's realised that guidelines are guidelines and not directives - listen to the patients instead of relying on blood tests, which are inaccurate, contain ranges that are WAY different to those in other countries - the practitioners in this country are letting us down - they would soon see what we are up against if they had health problems of this sort themselves.  It is HARD living a normal life when your body won't support you - and a body without the right hormones is an overworked body at severe risk of further health complications - treat me NOW and get me well, not when I get so severely ill I cannot work or have a heart attack and need hospital treatment!  I have worked all my life and paid National Insurance - only to be severely let down when I needed the support most.  Problems with thyroid are a lifetime condition, they don't get better by themselves - the situation in this country is appalling - and when doctors buck the trend by helping the patient first and taking note of blood tests second, they are disciplined or struck off!  

    I have not yet got my head round the science of all these hormones and replacements, but this is a comment from the heart - for goodness sake something needs to be done or people like me are being condemned to a second or third class existence when the symptoms are so obvious and treatment so easy!  

  5. Sally Anne Beaman Sally Anne Beaman United Kingdom says:

    I am one of the people who was diagnosed as hypothyroid after becoming so ill I could not walk to the end of the road, having previously being active and healthy. I immediately began to improve when put on to thyroxine. However, I was not allowed to increase the dose beyond 50mcg because this brought my TSH below the 'normal' range. It was over 18 months before I was given a consultant appointment, during which time I had dragged myself around. The consultant I saw was not an endocrinologist, did not have my notes and had 'diagnosed' me as suffering from CFS after about 3 min's. He did not offer any further treatment, as he said there were no specialists in Wales. I struggled on for a while longer and then saw another GP who was willing to try me on a higher dose of T4. I immediately felt better - maybe 90% or more of optimum health expected, BUT when the TSH result showed below normal, she reduced it again and with it my state of health. We negotiated a trial of 62.5mcg, which improved my health just enough to struggle on with full time work, but even this produced a TSH below the 'normal' range. She did agree to refer me to an endocrinologist. (However the appointment offered by the hospital once again was with a general physician). So after feeling so unwell for 3 years I decided to go against all my principles (I'd worked for 24 years in the NHS) and pay for a private consultation with an endocrinologist. He said he was happy to increase my T4 as long as my TSH was measurable. It certainly was easily so on my previous trial. So once again I have a reprieve. He has also said that if T4 alone is not sufficient to make me well he will be happy to allow me to try adding T3. I'm so happy to have hope at last. I have talked to GPs elsewhere in the country who say this is common practice in their surgery. Why oh why are so many patients made to suffer unnecessarily for want of cheap, easily available medication? If the RCP have so much evidence to support their guidelines why don't they publish it? There is so much evidence published in professional journals that appears to contradict their guidelines, surely they would want to explain themselves for the sake of their clinical colleagues if not for their patients. The endocrinologist was able to put a rough figure on the risk factors, which other practioners had not been able to do, so that I was fully informed of ny risk, which was minimal. I would have gladly given up many expected years of life in order to LIVE rather than live a living death for longer, always assuming the covert hypothyroidism didn't kill me first!

    Why oh why are so many patients made to suffer unnecessarily for want of cheap, easily available medication? If the RCP have so much evidence to support their guidelines why don't they publish it? There is so much evidence published in professional journals that appears to contradict their guidelines , surely they would want to explain themselves for the sake of their clinical colleagues if not for their patients. (I am a retired clinical scientist and as such know all about clinical trials and extracting the relevant facts from scientific papers.) There is such a weight of arguments against them I urge them to organise an open meeting where they can explain how they arrived at their conclusions and allow plenty of time for questions. At the moment we live in a post code lottery. I presume that epidemiological data in itself will be quite revealing. Some patients have been treated with THS below 'normal' or with T4/T3 combinations or natural thyroid extract for decades whilst others have been deprived of this. If the RCP guidelines are correct a large reduction in life expectancy will be evident in the former group. Even if this is the case surely patients should be given a fully informed choice as they are in so many other situations where far more potent drugs are used.

    Patients are not paying huge amounts of money for private treatments for fun, but because they have been offered NO other alternative that works.

  6. Glynis Jones Glynis Jones United Kingdom says:

    The BTA should be much more concerned with the fact they are letting sufferers rot with their appalling attitude. 3% of the population suffer with Hypothyroid? And how would they know this? Has any research been done? Who have they asked? When and where was their questionnaire published?

    NHS guidelines state that clinical results are only ONE of the things that doctors need to take into account when diagnosing not THE ONLY thing. I have been Hypo for 7 years, (yes seven) and have been physically examined ONCE and that was under sufferance and was not a complete examination, the 'endo' felt my neck, did not test reflexes or anything else, did not want to know about my symptoms and would not do any other test but TSH bloods.

    I suffered agonies for 7 years, hair falling out, could hardly stay awake and in so much pain I was suicidal, I wish that I could kick the backsides of the 5 'endos' that refused to listen to me, called me a liar and smugly told me I would have to live with it!!

    Just what is the BTA / BTF's vested interest in keeping people sick and helpless?

    I would just like to say to them that they are breaking up families, they are increasing the drugs bill by prescribing useless medicines such as anti depressants and worst of all ignoring and alienating a large number of sick people who could be much better if given proper treatment.

    I used to think that I would never wish this illness on anyone, but I really wish that all the smug, ignorant and poorly educated 'endos' would become Hypo and not be able to convert their crappy Levothyroxine to the necessary T3!! They'd soon be screaming for a change of the 'guidelines' then!!

    The BTA / BTF / etc. insist that T4 is the active hormone, not the T3, HELLO!!!! If the T3 is not active then why have you spread silly rumours that it is dangerous? If its inactive then what harm can it do? Why can't they get their heads from up their backsides and read the up - to - date information that is readily available? Clinical papers are online and can be downloaded for free in some cases, (wouldn't want them to spend any of their precious earnings off the back of sick people would we?)

  7. Sheila Turner Sheila Turner United Kingdom says:

    The organisations who endorsed the new guideline:

    •  The Royal College of Physicians, in particular it’s Patient and Carer Network and the Joint Specialty Committee for Endocrinology & Diabetes (RCP) (Reg. Charity 210508)
    •  The Association for Clinical Biochemistry (ACB) (No.863235)
    •  The Society for Endocrinology (SFE) (Reg. Charity 266813)
    •  The British Thyroid Association  (BTA) (Reg. Charity 1119631)
    •  The British Thyroid Foundation (BTF) (Reg. Charity 1006391)
    •  The British Thyroid Foundation Patient Support Group (BTF) (Reg.Charity 1006391)
    •  The British Society of Paediatric Endocrinology and Diabetes. (BSPED) (Reg. Charity 283986)


    “A Statement made on Behalf of ……”.www.british-thyroid-association.org/.../...ent.pdf .
    OK, but WHO authored this statement - Mickey Mouse?

    Is this why, when the Royal College have been asked to provide a list of the names of those on the working party,  they are ‘unable’ to do so?

    At first glance, like me, you might be forgiven for thinking all the above organisations must  have the necessary medical evidence to back up the statements. Don’t be drawn into the web. They haven’t shown one scrap of evidence. Why, because it was Mickey Mouse who authored the guideline on their 'behalf'. Do we need to ask who Mickey Mouse is? I don’t think so.

    Are these 7 completely separate organisations? Let’s take a closer look?

    The British Thyroid Association (BTA), The British Thyroid Foundation (BTF) and the Association of Clinical Biochemists (ACB) were the authors of the UK Thyroid Function Test Guidelines (2006) – so these can be counted as ONE organisation. The BTF Patient Support Group is run by the BTF –so we can discount these as separate organisations.The BTA, BTF and ACB are close affiliates to the Royal College of Physicians (RCP) – so still working under the same umbrella.

    All the above organisations share joint meetings at The British Endocrinology Society (BES). Both BTA and BTF have a trustee in common and keep abreast of BES meetings. We can’t find that BES is a Registered Charity, but there are similarities in their list of meetings and the way they are ordered  'Associates'. Google BES and click on BES2009 - it takes you direct to the Society for Endocrinology (SFE.

    www.endocrinology.org/meetings/2009/sfebes2009/. We come back again to just ONE organisation.

    So, we are left with the British Society of Paediatric Edocrinology and Diabetes (BSPED), but hang on a second – they have a statement on their web site that they too are affiliated with the RCP and the Society for Endocrinology (SFE) – so again, we find there is only ONE organisation involved in the authorship of this guideline.  

    I nearly forgot the involvement of the 'Clinical Endocrinology Trust' (CET) - are they related too?

    Yes. The President of the BTA is a Trustee of CET - as was the past BTA president.

    Now we know why other patient organisations and medical practitioners were not approached for their views – quite simply,they are not members of this very private club.

  8. Ina Whitlam Ina Whitlam United Kingdom says:

    The Hypothyroid population are being let down by the majority of the medical professionals relying on the present day method of the analysis of TSH blood test results ONLY in their diagnosis of a possible under active thyroid problem.
    What has happened to the diagnosis of the person (yes that miserable, ill human being) by actually LOOKING at that person who shows all the signs and symptoms of Hypothyroidism and treating accordingly with medication to regain full health.
    Thyroxin, the synthetic medication is so very cheap, £2 per month,and also treating with Armour Thyroid if necessary, which is the natural medication used before the synthetic Thyroxin was developed, which suits some patients better, until they are back to full health again. This will help people to get their lives back on track and prevent unnecessary hospital tests, treatments and medication by the NHS professionals and also curb the drain on the State Benefits system for these people presently to ill to work due to the 'new' diseases of ME,Chronic Fatigue Syndrome and Fibromalgia, which in my case was untreated Hypothyroidism due to blood results returning as in the so called 'NORMAL RANGE'. (Normal for who everyone? I don't think so).
    Most importantly, the correct treatment for Hypothyroidsm given sooner could prevent serious heart problems occurring later as I now have.
    Wake up you medical people to what you are NOT doing correctly and be true to your Hippocratic oath

  9. Jill McGinn Jill McGinn United Kingdom says:

    What a load of old horse manure..!!! I am extremely angry at this futile and flippant statement. MILLION even BILLIONS of tax payers money could be saved each year if the symptoms ( which they used to be many moons ago ) were taken into consideration and diagnoses not just weighted on the TSH test. I have spent YEARS being treated for health problems attributed to Hypothyrodism some which required surgery i.e. IBS, and endometriosis and no doubt added to the cost of my healthcare, and I am sure I am not alone. After a YEAR of fluctuating TSH tests one being over 10 and a POSITIVE TPO, I have only just started Levothyroxine. Therein lies the problem of knowing if I am converting because A- levothyroxine ONLY contains one hormone T4, and B- the T3 test is hardly EVER offered. Everybody knows that one feels better with a TSH near 1, and mine were never below 3, varying from 4, 5, 6 ,7 and 10 in some degree, and the refernce range here in the UK is the ONLY one that uses an upper limit of 4 or 5, most are 2 or 3. Better treatment and diagnoses is needed NOW, not only to stop unecessary suffering and to SAVE lives but to stem the haemorrhaging of cash from the NHS.

  10. Janet Morton Janet Morton United Kingdom says:

    For 20 years I suffered with hypothyroidism after the birth of my youngest child.  Due to the TSH test I have been denied treatment even though I showed many clinical signs of the illness, and have gradually got worst  over the years.  I have been referred to several consultants for conditions due to the hypothyroid symptoms, what a waste of NHS resources and a waste of my life too.  I have been swollen up and having difficulty walking, I couldn't get out of the bath, my memory was gone, but all the GP wanted to know was the TSH figures, 5.5 is 'normal'!!  In America they get treatment at 3.0 and in Germany the threshold is 2.5, in the UK it is 10.0!!  Who is the joker that decided that one!   Thank heavens I found my way to getting a diagnosis and treatment and now I am getting so much better.

    I have been back in the garden this year trying to catch up on years of neglect, and feeling much more like myself again.  I feel so sorry for the people who are still struggling, I see them in town when I go shopping and feel guilty that I have got my health and they are getting worst.  You will have to consider me the one who escaped with my life, and just be satisfied that there are plenty others out there who know no better and will soon pass on - enjoy!

  11. Dawn Allen Dawn Allen United Kingdom says:

    I am amazed by the poppycock, I am annoyed by this ''But they suggest that if well being is not restored despite normal concentrations of thyroid stimulating hormone, it is important to exclude other conditions as the cause of ongoing symptoms. If no obvious cause is found the patient should be referred to an accredited hospital endocrinologist or general physician.''

    And then what? They tell you you have CFS/FM and leave you to rot. Then you start taking Natural Thyroid Hormones and treat your adrenals and start to slowly get better. It is a long road because it has taken a long time for your poor body to get into the state it has on years of thyroxine treatment and 'pharma' products for conditions which you wouldn't have if you were treated properly for your thyroid condition in the first place.

    So we are supposed to put up with being abandoned onto the rubbish tip are we? I don't think so, we may be unwell but we will fight for the right to be treated effectively for a horrible condition. Even if we die before we get it it may benefit our children.

    Onwards hypo soldiers Smile

  12. Claire Claire United Kingdom says:

    I was on 100mcgs thyroxine for my hypothyroidism and felt dire. Was told it was psychological - and also told that my bleeding tendencies were too (Psychogenoc purpura. Amazingly - a haemotologist eventually clicked that he was seeing a lot of ladies whit hypothyroidism who had bleeding problems. He noticed that we were all on what seemed much lower doses than when he trained many moons ago. He also put 2 and 2 together and realised we all had acquired Von Willebrands secondary to hypothytroism -despite being adequately treated according to our TSH.

    He raised our doses of thyroxine until our Free hormone levels were at the top of the range. Our bleeding tendencies vanished and Von Willebrand factor activity returned to normal. Even better...all those horrid symptoms that we were told were psychological varnished and we all felt so much better. No more bleeding episodes and good health. Good heh...just every time we get our blood tested the lab writes back saying we are over-medicated.

    I did try reducing my dosage of thyroxine once3 -but stated bruising badly again. Not a good idea.

  13. J Cameron J Cameron United Kingdom says:

    Re: Concerns about the recent ‘joint statement’ by the Royal College of Physicians et al, in relation to ‘The Diagnosis and Management of Primary Hypothyroidism’.

    This ‘joint statement’ and the above news item are of serious concern to the many thousands of hypothyroid patients who are intolerant of thyroxine (levothyroxine –T4) and/or whose blood test results do not correlate with their symptoms of hypothyroidism, to highlight just two of the issues. Therefore, we have written to all the organisations responsible for the issue of the ‘joint statement’ to express our concerns about its content. We are not the only ones to do so as many others, including hypothyroid patients, doctors and hypothyroid patient support groups, have also written to the above organisations to voice their concerns about the ‘joint statement’ and to include scientific references which contradict assertions made within the statement.

    As a result of all this correspondence, Professor Ian Gilmore – President of the Royal College of Physicians has agreed to review our letter and papers along with other similar communications from the other groups cited above. This review is to take place very soon.

    We also believe that the RCP et al ‘joint statement’ lacks balance and transparency. Therefore we have requested that when the proposed review is conducted the Royal College of Physicians and the other organisations involved, consider the views of patients, who have been harmed or are at risk of harm as a direct result of this ‘joint statement’ and to involve some such patients as part of the review. In addition, we have requested that representatives of the patient support groups who were excluded from the deliberations the first time round are invited to participate. Furthermore, in the spirit of research and the furtherance of medical knowledge we have requested that doctors and researchers who have successfully treated hypothyroid patients by prescribing T3 preparations [including desiccated thyroid] and T3/T4 combination therapy are also invited to attend this review to deliver their viewpoint and share their experiences and expertise with the review body. To summarise, to ensure the validity and credibility of this review, all evidence must be considered.

  14. J Cameron J Cameron United Kingdom says:

    Re: Concerns about the recent ‘joint statement’ by the Royal College of Physicians et al, in relation to ‘The Diagnosis and Management of Primary Hypothyroidism’.

    This ‘joint statement’ and the above news item are of serious concern to the many thousands of hypothyroid patients who are intolerant of thyroxine (levothyroxine –T4) and/or whose blood test results do not correlate with their symptoms of hypothyroidism, to highlight just two of the issues. Therefore, we have written to all the organisations responsible for the issue of the ‘joint statement’ to express our concerns about its content. We are not the only ones to do so as many others, including hypothyroid patients, doctors and hypothyroid patient support groups, have also written to the above organisations to voice their concerns about the ‘joint statement’ and to include scientific references which contradict assertions made within the statement.

    As a result of all this correspondence, Professor Ian Gilmore – President of the Royal College of Physicians has agreed to review our letter and papers along with other similar communications from the other groups cited above. This review is to take place very soon.

    We also believe that the RCP et al ‘joint statement’ lacks balance and transparency. Therefore we have requested that when the proposed review is conducted the Royal College of Physicians and the other organisations involved, consider the views of patients, who have been harmed or are at risk of harm as a direct result of this ‘joint statement’ and to involve some such patients as part of the review. In addition, we have requested that representatives of the patient support groups who were excluded from the deliberations the first time round are invited to participate. Furthermore, in the spirit of research and the furtherance of medical knowledge we have requested that doctors and researchers who have successfully treated hypothyroid patients by prescribing T3 preparations [including desiccated thyroid] and T3/T4 combination therapy are also invited to attend this review to deliver their viewpoint and share their experiences and expertise with the review body. To summarise, to ensure the validity and credibility of this review, all evidence must be considered.

  15. Marie Kuby Marie Kuby United Kingdom says:

    'More and more people are being inappropriately diagnosed and treated for under activity of the thyroid gland (known as primary hypothyroidism), warn doctors in an editorial published on bmj.com.'

    If there are allegedly more and more people being inappropriately diagnosed and treated for under activity of the thyroid gland well then surely this should also ring out warning bells loud and clear that something is seriously wrong with the existing medical treatment of under activity of the thyroid gland.

    "The Royal College of Physicians recently set out clear guidance for the diagnosis and treatment of primary hypothyroidism in the United Kingdom, so why have these problems arisen, ask the authors?"

    To be seen to be efficient is not necessarily the same as being effective especially when patients are having to face NHS doctors who have a tendency to either make light of a patient's symptoms and/or treat individual symptoms, as opposed to looking at a possible medical cause for those same symptoms. It is because of this that many patients are having to wait far too long, often running into years, for their initial diagnosis of hypothyroidism. An initial diagnosis of hypothyroidism that is welcomed with great relief only to have that same relief suddenly squashed because subsequent 'normal' thyroid blood test results do not show a true reflection of the debilitating symptoms still being experienced by a notable number of those same thyroid patients. Many thyroid patients in turn continue to be terrorized by their 'normal' blood test results.

  16. Monica Hermolle Monica Hermolle United Kingdom says:

    What has happened to patient choice? If patients know their health improves with certain treatment have they not a right to continue? If they know that a particular doctor improves their health have they not the right to choose him/her. Why should anyone else make those choices for an individual? Advice is one thing, control is another.
    What has happened to freedom of information? Why has it not been possible to publish the membership of the committees? Surely not to do so arouses concern over the independence of each group or the integrity of its material?

    • J Whitehouse J Whitehouse United States says:

      Also, on Page 68 of the 2006 BTA Guidelines it states, "Routine thyroid function tsting has been available for more than thirty years.  Therefore, it may seem surprising that the quality of evidence to support the recommendations in these guidelines is generally poor.

  17. Judith Franklin Judith Franklin United Kingdom says:

    Hi, I have had Hashimoto's for 40+ years without a diagnoses. This is how hard it is to get one under the NHS. They have no training in hypothyroidism, because if they did they would know that the origin is in autoimmunity, and that the thyroid tests are not sensitive enough to pick up all patients with this problem. It took a private doctor who suffers from this disease to diagnose me in 1990, but my doctor still will not treat me. After many visits and travels to 3 different doctors who are now retired, I now buy my medicines from the internet as I cannot afford private health care as I am a pensioner. What are we going to do now as doctors are following the wrong guidelines in the diagnosing of the thyroid and it's close gland the Adrenals. I had many symptoms including three misscarrages and two boys with Autism, which is caused by the auto-antibodies in (autoimmune thyroiditis). They pass through the placenta and cause brain damage to the baby.

  18. Daphne Caton Daphne Caton United Kingdom says:

    It is iniquitous that seriously ill people are having to fight for what is their right under any just medical system - the adequate investigation and treatment of their illness - particularly where there are ample and reliable proofs of them.

    I come to this area of enquiry from the ME community where there is such terrible suffering by so many with no help from the established medical service. I question the mind-set of those in power who can just dismiss the findings of knowledgeable researchers and those most closely affected by their decisions.

    Whatever happened to the desire to cure illness and to care for sufferers?

  19. Agate Karevoll Agate Karevoll United Kingdom says:

    I'm fighting for my life in the face of attacks by GP and endo****, and shall I say generic hydrocortisone not up to scratch. (That must also be illegal.)  After 40 years of undiagnosed hypothyroidism, 30 with classic ME symproms, 10 in adrenal failure and severe illnesses brought on by this, I have also developed an inability to convert T4, and then absorb T3 into the cells.  T4 gives me high BP and pulse, and only T3 over 100mcg lets my brain function.  I managed with 35mc Cortef, but with the generic I need twice as much.  These 'experts' are having kittens, but I am beginning to function.  So they are reducing dosages without titration.  It is not what is travelling in my blood, but what actually is happening within my cells which determines my health, or lack of it.  The waste of NHS funds on me over the years have been prodigious, add to it breakdown of family and prosperous business.  For myself as well, and having already lost my son (influenza - weak adrenals, look up the connection), I have watched my daughter struggling, and trying to cover up her poor stamina, since she was 10, she is now 25. I watch her going through the stages I had at her age, clearly I have passed it on.  Her doctor tells her how healthy she is. There is politics in this, WAKE UP.  The human engine is infinately more complicated that a car engine, don't pretend anything else.  And with many variables, one equation cannot give an answer.  That is elementary.

    • gillian broughton gillian broughton United Kingdom says:

      I have suffered for over 20 years with underactive thyroid, I also had my healthy ovaries removed. I have had broken relationships, miscarriages, living of benefits due to depression, my G.P as always treated me for depression and not the cause, I've spent hundreds on myself to try and regain my health back to normal. My only son is suffering and also has to pay for diagnosis and treatment. I have had more investigations on me wasting money instead of looking at the real cause thyroid, GPs are at best useless at treating thyroid sufferers.

  20. M. Link M. Link United Kingdom says:

    “Thyroid hormones also affect most organs, so hypothyroidism presents with symptoms that can mimic other conditions. This can lead to an incorrect diagnosis which could expose some patients to the harmful effects of excess thyroid hormones, while other serious conditions may go undiagnosed.”

    Conversely, symptoms that mimic other conditions, could equally be caused by a lack of sufficient thyroid hormones even though blood tests are ‘normal’ as many patients have found to their detriment.  This means that an apparently ‘normal’ blood test can lead to an incorrect diagnosis which could expose some patients to the harmful effects of a lack of thyroid hormones and that the serious condition of hypothyroidism which affects most organs as well as the brain goes undiagnosed.

    It should follow that if patients experience continued symptoms of hypothyroidism despite ‘normal’ blood tests they deserve that possible hypothyroidism be considered and be given a trial of more or different hormones such as Armour rather than being told that their symptoms must be imagined or that they must be caused by other unspecified illnesses.  

    There is really no need for patients, their partners, their children and their parents to have their lives ruined by hypothyroidism. The answer is easy: stop looking exclusively at blood test results and look and listen to the patient.  The only ones who will do this are a few open-minded and brave doctors who do not consider a blood test to be more important than the patient’s symptoms. By treating them despite ‘normal’ blood tests they have restored these patients’ health.

    The question, therefore, arises: is ‘normal’ really ‘normal’?  Why is it that patients experience hypothyroid symptoms despite ‘normal’ blood test results?  Why is it that these patients recover fully once they are given more or different thyroid hormones such as Armour?  Why is it that different countries have different reference ranges - while the same blood test is considered 'normal' in one country it means 'hypothyroid' in another.

    If all one needs is a blood test why do we need doctors at all?  A DIY job would suffice - the lab even provides a reference range!  There is no need to see an endocrinologist as it is solely the blood test that decides whether a patient is hypothyroid or not regardless of symptoms.

    Why do the BTA so fight the patients who have been diagnosed and treated so well that they are now symptom-free and have their lives back? Why do they not even consider listening to those doctors who have successfully treated these patients?  Shouldn’t they be really excited about the prospect of curing more people?

    Who told them that a blood test is the sole diagnostic tool? Why do they insist they know better than these patients and their doctors?  What do they have to lose?  One thing is certain: it is the patients who stand to lose most by this dogmatic approach - their health, their jobs, their family, their friends, their lives.

    It is then no surprise that patients who have had their health restored by being treated with thyroid hormones despite ‘normal’ blood tests profoundly disagree with the doctors at the British Thyroid Association that they have been diagnosed and treated inappropriately!  On the contrary, these patients have been given a new lease of life when none of these doctors with their guidelines would or could do anything to help! This begs the question: who has really diagnosed and treated these patients inappropriately?

  21. Sheila Turner Sheila Turner United Kingdom says:

    On the 22nd May, the following message was sent to all who commented on the RCP. BTA et al. 'guidance'.


    "Further to my  email of 6th April, the comments and materials received by the College have been reviewed.


    This position statement or guidance (not a guideline) was produced on behalf of the Royal College of Physicians, in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology and Diabetes; the Association for Clinical Biochemistry; the Society for Endocrinology; the British Thyroid Association; the British Thyroid Foundation Patient Support Group and the British Society of Paediatric Endocrinology and Diabetes and is endorsed by The Royal College of General Practitioners.


    The President has asked me to let you know that this review has not resulted in any changes to that statement.  It should be noted that it is about the treatment of primary hypothyroidism and does not preclude other treatments for exceptional cases by specialist endocrinologists who can make clear to patients any associated risks.


    References supporting the statement are listed below.


    Yours sincerely


    [Snipped by Administrator]



        
    • Diagnosis and treatment of primary hypothyroidism. BMJ 2009;338:b725

    •   
    • Vaidya B, Pearce S. A Clinical Review of the management of hypothyroidism in adults.  BMJ 2008;337:a801. This contains references for 35 articles and states that Armour thyroid is of no proved additional benefit to levothyroxine.

    •   
    • The Lancet, Volume 363, Issue 9411, Pages 793 - 803, 6 March 2004.  This covers the history, epidemiology, pathophysiology, and clinical diagnosis and management of hypothyroidism and is written by Caroline GP Roberts and Paul Ladenson of Johns Hopkins University School of Medicine, Baltimore, USA.  This review, which references 164 clinical articles, states that the treatment of choice for hypothyroidism is levothyroxine sodium (thyroxine) and does not refer to Armour thyroid.

    •   
    • Baloch Z, Carayon P, Conte-Devolx B, et al. Laboratory medicine practice guidelines. Laboratory support for the diagnosis and monitoring of thyroid disease. Thyroid 2003;13:3-126.

    •   
    • Association of Clinical Biochemists BTA, British Thyroid Foundation. UK Guidelines for the use of thyroid function tests. http://acb.org.uk/docs/tftguidelinefinal.pdf

    •   
    • Surks MI. Ortiz E, Daniels GH, et al. Subclinical thyroid disease: scientific review and guidelines for diagnosis and management. JAMA 2004;291:228-238".


    I have again asked the President to provide a list of the names of those people involved in the authorship of the original 'guidance' and a list of those people involved in the review of the 'guidance'.


    I will not hold my breath. If no such list is forthcoming, we can only assume the authors of the original 'guidance' are also the reviewers of their own 'guidance'. That would not be fair.


    The RCP, BTA et al. should take note of the following statement made by Dr Anthony Toft - Royal College of Physicians (Edinburgh):


    "Guidelines which were designed principally for their educational value are in danger of assuming a medicolegal importance far beyond that which was ever intended by their protagonists. Simply because no two patients present in the same manner, guidelines, by their very nature, are the antithesis of the art of medicine."


    www.rcpe.ac.uk/.../B_Editorial.pdf

  22. Eric Pritchard Eric Pritchard United States says:

    The fundamental problem in all of the guidelines for hypothyroidism is the ignoring or dismissing of the post thyroid functions of peripheral metabolism and peripheral hormone reception.  These functions were discovered circa 1970 and have become quite established in medical science literature since.  Since these functions are substantially in series between the thyroid and the body's symptom producing cells, their deficiencies mimic deficient secretion by the thyroid gland (hypothyroidism).

    Unfortunately, there are two definitions of hypothyroidism, "the clinical consequences of inadequate secretion by the thyroid gland,"  above, and "the clinical consequences of inadequate thyroid hormones in the body."  While the former only implicates the thyroid gland, the latter implicates all of functions that can cause deficient hormones in the body, including the ignored and/or dismissed post thyroid functions.

    This would not be a problem if the definition of "hypothyroidism" were stipulated and logical consistency maintained.  Unfortunately, one or both of these problems compound the lack of recognition of the post thyroid functions and potential deficiencies.  The recent guideline/guidance by the Royal College of Physicians becomes logically inconsistant with its stated limitation of primary hypothyroidism as it excludes any further therapy for the symptoms of hypothyroidism that exist with a "normal" TSH.  The American Association of Clinical Endocrinologists employ diagnostics for the thyroid gland but also proscribe therapies suitable for the post thyroid deficiencies.

    Unfortunately there are not checks and balances against these discrepancies.....

  23. Catherine Boyle Catherine Boyle United Kingdom says:

    I am horrified by the comments of the RCP and the general contempt and ignorance with which we are treated by the medical profession. I have struggled my whole life with hypothyroid symptoms and eventually "sussed" out what was wrong with me and asked to be referred to to an endocrinologist. After taking the initial THS tests which (incidentally Doctors and Endocrinologists don't know how to interpret). I went to my GP to get my blood tests results and was told quite aggressively that my this of 8.22 was "a bit like being below average height" nothing to worry about and I didn't need to see an endocrinologist. I was told by my endocrinologist that I did indeed have an under active thyroid and they would do another test to make sure, as the result was "normal". I was shunted from one endocrinologist to another who "reassured me" there was nothing wrong with my thyroid.

    After reading up about the subject and feeling like hell I decided to see a private Doctor who specialises in thyroid issues. He actually sat and listened while I described what life has been like for me and he took my temperature and looked at my tongue which was very swollen, (none of the other endocrinologists did this). He confirmed that I had an underactive thyroid and indeed had it all my life. I started off on thyroxine and this didn't help me at all, in fact I felt dreadful. I then asked him to prescribe armour, he did and for the first time in my life I feel alive. It makes me sick to the stomach to think of the people misdiagnosed with depression, Alzheimer's, people who are in wheelchairs, that have fertility problems, behavioural problems or people who have no idea that they have a problem with their health which could be turned around with natural dessicated thyroid. I wonder if the pompous and arrogant people who wrote these guidelines would treat their children with such disregard and ignore their symptoms.

    There is also the issue of adrenal fatigue which is not taken into consideration. I resent having to pay for my own medical treatment as I barely earn enough to live on as it is and I shouldn't have to, but I have no choice. I could never ever go back to the way I was. This is the biggest medical scandal ever! It is inhumane to deny us to the right to proper treatment. WAKE UP!!!!!!!!!!!!

  24. P Lynch P Lynch United Kingdom says:

    So, there we have it, the Royal College of Physicians have said there is to be no change to their statement on hypothyroidism.  I wonder who carried out the review on the statement where the authors remain nameless?

    Thousands of patients will suffer from loss of their medication and thousands will suffer in the future, all because of this blanket statement from the RCP.

    We asked that thyroid support groups, treated patients and doctors be involved in the review, but no, no-one was included regardless of the hundreds of references supporting our cases that were sent to the RCP.

    What do very ill patients, and patients who have recovered on thyroid medication have to do to get this statement changed.  In my case, suffering ill-health for four decades doesn't appear to worry these doctors, one single bit.  I hope they sleep well in their beds at night and can go to work the next day and do a full days work and then enjoy their free time, because thousands who are suffering because of statements like this, do not have the pleasure of the things these doctors take for granted.

    Someone has to listen to us, take us seriously and then take the bull by its horns to change this culture where the doctor is always right.  No-one can be right all the time, but we can forgive that if only they were to say 'sorry, we were wrong, in future we will listen and learn.'  

  25. Sara V Sara V Sweden says:

    The guidelines that the RCP has issued on hypothyroidism are completely ridiculous and I feel so sorry for UK patients. I lived in the UK for several years, but I'm so glad I left so that I'm able to get correct treatment.

    I had an atrophic thyroid gland shown on ultrasound, but with a TSH before treatment of 3.1 after 20 yrs with symptoms. Synthetic thyroxine made me more hypothyroid and I have to use Armour thyroid to function.

    It is beyond belief that the RCP issue guidelines but do not refer to scientific research. Commercial interests must somehow be involved here.

    But maybe I should thank the RCP, as hypothyroidism patients around the world are getting increasingly more informed and angry, and this is hopefully the last straw.

  26. Sheila Turner and Eric Pritchard Sheila Turner and Eric Pritchard United Kingdom says:

    Vision, Purpose, and Objective of the Royal College of Physicians http://www.rcplondon.ac.uk/Pages/index.aspx


    RCP Statement: "Educated to the Highest Medical Standards":


    FACT:  The medical science of the post thyroid aetiologies of the symptoms of hypothyroidism, circa 1970, is systematically ignored and dismissed - has been proven once again. [2-4]


    RCP Statement: "Leading Role in Delivering High Quality Patient Care":


    FACT: Patients are ignored in favour of laboratory assays. When the "subjective" patient presentation conflicts with the "objective" blood test, the test results take precedence - the source of the conflict is not investigated - it could be that the test is improper or improperly interpreted as thyroid function tests are for post thyroid deficiencies. The medical care of the post thyroid deficient patient is essentially no care. The prescription by the Royal College of Physician for these victims is chronic suffering and increased susceptibility to disease, especially life's great killers, diabetes and heart disease. [5-16]


    The RCP is not leading the way towards high quality patient care but following the improper, unethical care of peripheral thyroid hormone deficient (post thyroid) patients required by other medical associations, British [17-19] and American [20-25]


    The RCP guidance on the diagnosis and management of primary hypothyroidism is not logically consistent. It also does not adhere to linguistic standards of care set in the 17th Century and does not adhere to protocols for authoring medical practice guidelines set forth by the American Association of Clinical Endocrinologists [26] and others.


    If this statement on the diagnosis and maintenance of primary hypothyroidism were examined as studies on medical practice guidelines [27-29] would do, it would be judged a failure, probably an abject failure.


    RCP Statement: "Championing the Values of the Medical Profession":


    FACT: The medical care prescribed by the RCP for the post thyroid deficient patient violate numerous standards of medical ethics. Briefly they are the following:



        
    • Provide a Good Standard of Practice and Care. Keep Your Professional Knowledge and Skills up to Date. The UK General Medical Council (2006)

    •   
    • Make the Care of Your Patient Your First Concern The UK General Medical Council (2006)

    •   
    • Be Honest and Open and Act With Integrity. The UK General Medical Council (2006)

    •   
    • In the treatment of a patient, where proven prophylactic, diagnostic and therapeutic methods do not exist or have been ineffective, the physician, with informed consent from the patient, must be free to use unproven or new prophylactic, diagnostic and therapeutic measures, if in the physician's judgement it offers hope of saving life, re-establishing health or alleviating suffering. Where possible, these measures should be made the object of research, designed to evaluate their safety and efficacy. In all cases, new information should be recorded and, where appropriate, published. The other relevant guidelines of this Declaration should be followed. (World Medical Association - Helsinki, 1964)


    RCP Statement:"Improving Standards of Clinical Practice":


    FACT: The clinical practice prescribed by the RCP for the post thyroid deficient patient IGNORES medical science, the differential diagnostic protocol, and evidence based medicine.


    Medical science has acknowledged the existence of the post thyroid operations upon thyroid hormones - the conversion of the relatively inactive pro-hormone, thyroxine (T4), to the active hormone, triiodothyronine (T3) and the reception of T3 by the peripheral cells for the use in their nuclei. But these are not included in any differential diagnostic expressed or implied. The evidence proffered by this medical science must be considered as part of clinical practice. However, the routine thyroid laboratory assays do not examine post thyroid behaviour. And the RCP has effectively banned all other potential tests. This is contrary to the wisdom of system testing, which demands testing before and after every major function. Even more basically, the RCP is effectively covering up the shortfalls of medicine for the post thyroid deficient patient in the fog of imprecise language which confuses these issues by describing physiologically different issues by the same names and terms. [30].


    The care of post thyroid deficient patients is distinctly not centred on the patient. It is, however, centred upon one or more quite unprofessional human frailties, such as ignorance or improper dismissal of relative medical science.


    The improper diagnosis of "functional somatoform disorders" unfairly blames the patients' imaginations for their treatable physical deficiencies. [31] The improper blaming of inadequate medicine with "nonspecific symptoms" also unfairly condemns the patient to life-long chronic suffering. [4]


    If the RCP statement were truly patient centred it would not proscribe the therapies that have been proven necessary in so many patients and are necessary in so many more. A study discovered of those treated for hypothyroidism, 13% were dissatisfied with their medical treatment and care [32] and worse. [33] These high dissatisfaction rates are neither caring nor professional.


    RCP Statement:
      "Supporting Physicians in their Practice of Medicine":


    FACT: The RCP, by issuing the subject statement, has joined other professional societies in forcing a professional dilemma upon medical practitioners: Treat post thyroid deficient patients ethically and scientifically and face the wrath of the General Medical Council - or not treating the patient properly or ethically. Either way, this is hardly being supportive of the practice of medicine in the niche of post thyroid deficiencies. [30] The RCP is setting a standard of care in the post thyroid deficiency niche which is unreasonably below the potential demonstrated by medical science.


    RCP Statement:  "Provide Leadership on Health and Healthcare Issues":


    FACT:  The RCP, in support of various endocrinology associations relative to the knowledge, diagnostics, and healthcare for the post thyroid deficient patient, has not lead - but retreated from modern medical science, embraced the imprecise language of this niche of medical practice, and created the basis for enforcement for virtually torturing of all post thyroid deficient patients. This is distinctly not healthcare leadership.



        
    1. The Royal College of Physicians, The Diagnosis and Management of Primary Hypothyroidism, November 2008, Endorsed by the Royal College of General Practitioners made on behalf of numerous endocrinology associations

    2.   
    3. Gossel, TA, Endocrinology Continuing Education accredited by the Accreditation Council for Continuing Medical Education (ACCME), 2005

    4.   
    5. Garber JR, Hypothyroidism-Talking Points 2006, AACE

    6.   
    7. "Wilson's Syndrome," American Thyroid Association, Nov 1999 updated May 2005

    8.   
    9. Starr, Mark MD, Hypothyroidism Type 2, Mark Starr Trust, Columbia, MO, 2005

    10.   
    11. Lowe JC, The Metabolic Treatment of Fibromyalgia, McDowell Publishing Company, 2000

    12.   
    13. Barnes, B MD, Hypothyroidism: The Unsuspected Illness, Harper & Row, 1976, pgs 142-144, 178-181

    14.   
    15. American Thyroid Association, Hypothyroidism, ©2005, a patient brochure available at the ATA website: http://www.thyroid.org

    16.   
    17. Hypothyroidism, a publication by the American Association of Clinical Endocrinologists and supported by Abbott Laboratories. 2006 & 2008. http://www.thyroidawareness.com

    18.   
    19. Nikoo MH, Cardiovascular Manifestations of Hypothyroidism, Shiraz E-Medical J, 2(1) www.sums.ac.ir/.../hypothy&heart.htm

    20.   
    21. Hak AE, Pols HAP, Visser, TJ, et al., Low Thyroid Function Without Symptoms as a Risk Indicator for Heart Disease in Older Women, Ann of Intern Med, 15 Feb 2000, 132(4):270-278

    22.   
    23. Camacho PM, Dwarkanathan AA, Sick Euthyroid Syndrome, Postgraduate Medicine , April 1999, 105(4)

    24.   
    25. Canaris GJ, Manowitz NR, Mayor G, Ridgway EC, The Colorado Thyroid Disease Prevalence Study, Arch Intern Med, Feb 28, 2000, 160(4)

    26.   
    27. Thyroid Problems Increase Risk of Heart Disease and Death, American Thyroid Association, Oct 1, 2004

    28.   
    29. Kvetny J, Heldgaard PE, Bladbjerg EM, and Gram J, Subclinical Hypothyroidism is Associated with a Low-Grade Inflammation, Increased Triglyceride Levels, and Predicts Cardiovascular Disease in Males Below 50 Years, Clin Endocrinol, August 2004, 61(2):232

    30.   
    31. Iervasi G, Pingitore A, Landi P., et al., Low-T3 Syndrome - A Strong Prognostic Predictor of Death in Patients With Heart Disease, Clin Physiol Inst, American Heart Association ©2003

    32.   
    33. Hypothyroidism - Clinical Features and Treatment, a publication of the British Thyroid Association, www.british-thyroid-association.org/guidelines.htm

    34.   
    35. Vanderpump MPJ, Ahlquist JAO, Franklyn JA, et al., Consensus Statement for Good Practice and Audit Measures in the Management of Hypothyroidism and Hyperthyroidism, BMJ, August 1996

    36.   
    37. UK Guidelines for the Use of Thyroid Function Tests, The Association for Clinical Biochemistry, British Thyroid Association, British Thyroid Foundation, (2006), www.british-thyroid-association.org/guidelines.htm

    38.   
    39. Baskin HJ, MD, Medical Guidelines for Clinical Practice for the Evaluation and Treatment of Hyperthyroidism and Hypothyroidism, Am Assoc Clin Endocrinol, 2002, Rev 2006

    40.   
    41. Levy EG, Ridgway EC, Wartofsky L, Algorithms for Diagnosis and Management of Thyroid Disorders, http://www.thyroidtoday.com

    42.   
    43. The American Thyroid Association provides links to several hypothyroidism related guidelines: "Use of Laboratory Tests in Thyroid Disorders," "Treatment Guidelines for Patients with Hyperthyroidism and Hypothyroidism," and "Guidelines for Detection of Thyroid Dysfunction."

    44.   
    45. Levy EG, Hypothyroidism Treatment Failure: Differential Diagnosis, http://www.thyroidtoday.com,

    46.   
    47. Garber JR, Hennessey JV, Lieberman JA, Morris CM, Talbert RI, Managing the Challenges of Hypothyroidism, Supplement to J of Fam Pract, 2006, http://www.jponline.com

    48.   
    49. Kaplan MM, Clinical Perspectives in the Diagnosis of Thyroid Disease, Clin Chem, 1999, 45:8(B) 1377-1383

    50.   
    51. Mechanic JI, Berman DA, Braithwaite SS, Palumbo PJ, American Association of Clinical Endocrinologists Protocol for Standardized Production of Clinical Practice Guidelines, Endocr Pract, 2004, 10(4), Particularly Table 4

    52.   
    53. Shaneyfelt TM, Mayo-Smith MF, Rothwangl, J, Are Guidelines Following Guidelines?, JAMA, May 26, 1999., 281(20)

    54.   
    55. Grilli R, Magrini N, Penna A, Mura G, Liberati A, Practice Guidelines Developed by Specialty Societies: The Need For a Critical Appraisal, Lancet, Jan 8, 2000.

    56.   
    57. Burgers JS, Fervers B, Haugh M, Brouwers M, Browman G, Cluzeau PFA, Internatinal Assessment of the Quality of Clinical Practice Guidelines in Oncology Using the Appraisal of Guidelines and Research and Evaluation Instrument, J Clin Oncol, May 15, 2004, 22(10)

    58.   
    59. Pritchard EK, "The Linguistic Etiologies of Thyroxine-Resistant Hypothyroidism," Thyroid Science http://www.thyroidscience.com - click on "debate."

    60.   
    61. Weetman AP, Whose Thyroid Hormone Replacement is it Anyway? Clin Endocrinol, 2006;64(3):231-233

    62.   
    63. Saravanan P, Chau F, Roberts N, Vedhara K, Greenwood R, Dayan CM, 2002, Psychological Well-Being in Patients on "Adequate" Doses of L-Thyroxine Results of a Large, Controlled Community-Based Questionnaire Study, Clinical Endocrinology, 2002, 57: 577-585

    64.   
    65. Turner S, Hypothyroidism Patient Survey Results, Thyroid Patient Advocacy-UK, http://www.tpa-uk.org/tpauk_survey.pdf  

  27. Lou Lou United Kingdom says:

    The above article is correct, these websites are grossly misleading people with the all manner of symptoms they attribute to hypothyroidism, brainwashing people into believing they have this condition and advice that is simply damned right dangerous and they should be shut down.

    Why would they imagine the BTA/RCP would consult them in any guidelines or statements, they have no medical qualifications whatsoever and do not know the true meaning of hypothyroidism.

    These people are making money out of their claims, preying on the vulnerable and deliberatly trying to confuse the medical profession by using these brainwashed people as a weapon.

    How anyone can claim to have spent 20-30 years in ill health due to undiagnosed hypothyroidism is beyond a joke, you simply could not have survived that long.

    Fact - before blood tests you declined into myxedema and if it was recognised you were lucky and treated, failing that you slipped into death.

    If only these people suffered and knew the true symptoms of hypothyroidism, rather than continually putting down the very people who are medically qualified and working to prevent suffering.

    • Alexis Baranek Alexis Baranek United States says:

      So the only TRUE hypothyroidism is one where the thyroid stops functioning and the person goes into a total decline?  There are no DEGREES of hypothyroid that can cause symptoms for years and ruin a person's quality of life?  The high choloesterol that ends up being treated with dangerous stains, the depression and tiredness that ends up being treated with Antidepressants that have BAD side effects - all the other things - they all don't really exist unless one is EXTREMELY hypothyroid and has a HIGH TSH?  Give me a break?  IF you are a medical professional you are doing a great disservice to your patients - LOOK at all the comments by so many here?  For those of us who suffered with various symptoms for years (YES - we DID) and the many that still are - WHY would a safe treatment with the one thing our body isn't making enough of be the answer as opposed to dangerous drugs and being told it's all in our head!  SICKENING!

  28. Denise B Denise B United Kingdom says:

    I have hypothyroid symptoms for most of my adult life - I am now 62.  For the past 15 years I have been seeing my GP with hypo symptoms and signs but have been told that I have depression and anxiety.  When I saw one GP and asked him, apart from all the other symptoms I have, why are my eyebrows so sparse and the outer third missing he told me "it's your age, dear".  He did not say to me 'ah, yes, eyebrows sparse, missing outer third - classic sign of hypothyroidism'. Another GP sent me for tests at the hospital, thyroid scan, blood tests.  The doctor I saw there did not examine me, did not ask any questions - she just said that I did not have a thyroid problem.  Blood tests and scan 'normal'.  

    I was almost hibernating with the tiredness, I could hardly walk due to  the pain in my back, legs, hips, feet, I could hardly remember what day it was, I had no hair on my arms, legs and body, sinus pain, headaches, weight gain, constipation - so many symptoms and signs.  In desperation I raided my savings and saw a thyroid and metabolic specialist - he diagnosed me with hypothyroidism and the tests I had done (again paid from my savings) confirmed his diagnosis.  Over the past two years, with the help of this specialist, I regained my health.  I am now taking Armour and T3 and medication to support my adrenals.  In a strange way I am glad that I was not diagnosed by my GP because I would have been given thyroxin and remained unwell.  Because I have a post thyroid deficiency - the T4 cannot convert to T3 in my cells - the thyroxin would have been deadly for me.  Because I sought medical help OUTSIDE the NHS, I have been treated PROPERLY - I am regaining my health - I am feeling better than I have done in over 20 years.  If this wonderful thyroid and metabolic specialist can diagnose my thyroid hormone problem - and have it confirmed with tests - and then suggest medication which suits MY SPECIAL NEEDS, then why can't the NHS doctors and endos? This thyroid specialist is a medical doctor, he has a vast amount of qualifications. He trained at a leading London hospital.  Why should be be classed as a non-accredited practitioner just because he does not work within the NHS - he is a renowned and well respected doctor because he makes people WELL.  The independent laboratory where my tests were done is a reputable laboratory. The thyroid medication - Armour which I am taking has been around for over 100 years.

    I found the information which has given me back my life on the internet. I found help and support from an internet thyroid forum www.tpa-uk.org.uk. THE INFORMATION I FOUND ON THE INTERNET SAVED MY LIFE.

    The NHS has failed me - the NHS was killing me.  I have paid into the NHS all my adult life - what have they done to help me?  NOTHING! I have had to raid my savings to regain my health.  

    The hubris of these so called 'experts' who dictate what the NHS medical profession should say and think is astounding.  They hide behind their ivory tower, raking in vast amounts of money - they are not held to account or made to justify their 'guidance for diagnosis', they give no references to back this up. They are killing so many people by the result of their actions.

    I wonder what would happen if one of these 'experts'had hypot signs and symptoms and could not get a diagnosis because their blood tests were 'normal' - or if they were given thyroxine and they still felt ill. What would they do if the medical tests and the medication they NEED to make them well was not in their 'guidance for diagnosis'?

    Something has to be done - why is no-one listening?

  29. P Lynch P Lynch United Kingdom says:

    I have just read the message from 'Lou', the only message by the way with just one name. It would be interesting to know their interest in this case.

    We were actually saying the RCP should cosult during the review, and why has the BTA been named before the RCP in this message from Lou? Of course, it was the BTA 2006 Guidelines entitled UK Guidelines for the Use of Thyroid Function Tests (July, 2006)where on page 68 they stated, "Routine thyroid function testing has been available for more than thirty years. Therefore, it may seem surprising that the quality of evidence to support the recommendations in these guidelines is generally poor."
    The Association of Clinical Biochemistry, the British Thyroid Association and the British Thyroid Foundation.

    Perhaps 'Lou' could comment on the above statement as this statement probably adds to the confusion of the medical profession.

    He/she may like to know that I actually don't want to spend my time writing letters to the Royal College of Physicians or posting on a site such as this, but I'm afraid I and others like me have to for the sake of our future health, that of our relations and the general public at large.

    If it wasn't hypothyroidism for so many years, could 'Lou' give an explaination as to why thyroid replacement worked.  It couldn't possibly have been a placebo effect, purely because of the many other inappropriate treatments given over the years and they hadn't worked.  

    As for being brainwashed, I am not brainwashed,  I am an intelligent person and 'Lou' doesn't know my professional status, qualifications etc., so no assumptions should be made by him/her.

    I have suffered and I know the true symptoms of hypothyroidism; whoever wrote this hasn't suffered as we have. Some patients suffer more severe symptoms, some very slight. We are all different.

    "A common misconception is that a patient must be comatose to be diagnosed with myxedema coma.  However, myxedema coma is a misnomer because most patients exhibit neither the nonpitting edema known as myxedema nor coma.  Instead, the cardinal manifestation of myxedema coma is a deterioration of the patient's mental status."
    And, "Patients with myxedema coma usually have longstanding hypothyroidism, although it may not have been previously diagnosedThey often demonstrate classic symptoms of hypothyroidism: fatigue, constipation weight gain, cold intolerance, a deep voice, course hair, and dry, pale cool skin."
    American Family Physician. AAFP
    www.aafp.org/afp/20001201/2485.html

    In our letters to the RCP, we have backed up our responses with hundreds of references; they haven't just been correspondence to say how ill we have been and that we are now better.  We have given a scientific perspective on the subject.

    Putting down the medically qualified is not my aim, I can assure you. Being well was my aim and now my aim is to stay well thanks to the correct treatment.

    This illness can be particularly worrying when those in power have control of our lives and futures.  See below re Sir Edward Heath and Boris Yeltsin.

    Dr. Thomas Stuttaford intereviewed in The Times in April 2007 regarding hypothyroidism, quoted President Yeltsin's lead doctor, "President Yeltsin's lead doctor discussed with me at length the influence that the failure to diagnose hypothyroidism in Russia's leader earlier had had on his health.  Its effect on the blood cholesterol levels and therefore the arteries of the cardiovascular system is obvious - that on the heart muscle, the heart rate and the blood pressure more complex.  The effec on drinking patterns are intersting.  Hypothyroidism is often associated with hypoglycaemia, low blood sugar and hunger.  As an expert said to me this week, not only are the patients perpetually tired and so drink to give themselves a lift and a bit of energy."

    Regarding Sir Edward Heath, "On the last night of the first short session, I had dinner with two other medicap MPs, Sir Gerard Vaughan and Lord Trafford, both alas now dead.  They were not only medically qualified but also very distinguished doctors who were leaders in their own clinical disciplines.  During dinner we discussed the Prime Minister's health.  All three of us agreed that there was something amiss, but to our shame none of us spotted the condition."
    "The early signs and symptoms of thyroid deficiency are insisious and subtle.  They are very easy to miss, especially when someone sees a patient every day...........a serial film gives a record of the changes in appearance, movements and voice that make the diagnosis obvious."
    The Telltale loss of Power - Times Online Sir Edward Heath and Boris Yeltsin had underactive thyroids, a condition often hard to detect.
    www.timesonline.co.uk/.../article1709889

  30. J Cameron J Cameron United Kingdom says:

    An Opportunity Missed to Listen to the Concerns of Hypothyroid Patients

    Most interested parties will no doubt have already heard, that those of us who wrote to the Royal College of Physicians [RCP] and others responsible for the joint statement on: The Diagnosis and Management of Primary Hypothyroidism' were promised a review on the letters, papers and similar communications which we sent to the RCP et al.

    A large number of people took the trouble to write to the RCP et al and provided numerous references to support the many concerns they had with regard to the wording of the joint statement. The review has now taken place and the outcome of the review has resulted in no changes to the statement. This is both disappointing and disturbing.

    Disappointing, because those of us who wrote to the RCP and the other organisations involved, believed that, our concerns regarding the treatment [or more accurately the non-treatment or under-treatment] of hypothyroidism, would at long last be acknowledged and our concerns investigated by the medical profession.

    Disturbing, because although the emphasis within the statement does relate to concerns regarding inappropriate treatment or over treatment for hypothyroidism it does not also emphasise sufficiently, the catastrophic consequences for those patients who have not been diagnosed, misdiagnosed or under treated for hypothyroidism despite the fact that the RCP and others were informed of many instances of this happening by patients themselves.

    Therefore concerns remain, due to a perception of [1] bias within the statement coupled with both [2] a lack of balance and [3] a lack of transparency. In addition, since the review of communication and materials has resulted in no changes to the joint statement whatsoever, then [4] the validity and [5] the credibility of this review remains questionable.

    1] Perceived bias - This is because the original deliberations failed to include patient groups other than those linked with the RCP and the BTA. Thus it is perceived that only one set of ‘dogmatic’ views in this controversial area of medicine has been incorporated into the content of the joint statement as reflected in the wording of the statement.

    2] Perceived lack of Balance – As at [1] above, but also because the original joint statement seemingly, did not include reference to the full spectrum of information and/or research available in relation to the treatment of hypothyroidism. A vast amount of information, has been provided to the RCP et al, by those who had concerns with regards to the content of the joint statement in support of these concerns. But, it would appear that all this information, including research and references sent to the RCP et al and subsequently reviewed, has been disregarded. This is suggested by a refusal to change the statement by the reviewers.

    In addition, the paucity of references [six] used to substantiate the joint statement and review is startling given that large numbers of the population could be at risk of hypothyroidism. Such a low number of references quoted by the RCP et al, is in stark contrast to the hundreds of references supplied to the RCP et al by those concerned about the joint statement, which provide a different slant on this issue. So doesn’t this demonstrate a lack of balance in the joint statement and a lack of diversity of input into the production of the joint statement?

    Furthermore, requests for participation in the review, [particularly in respect of hypothyroid patients, hypothyroid patient support groups, doctors and researchers not included previously] were not even acknowledged let alone acted upon. So, who actually carried out this review? Why weren’t hypothyroid patients who could come to harm as a result of the joint statement invited to participate? Why weren’t the hypothyroid patient support groups and others who speak out for such patients, invited to participate?

    3] Perceived lack of Transparency - Despite requests to the RCP et al, for the authors of the joint statement to be named, this information has not been forthcoming and those involved with the joint statement and the individuals who produced the statement, remain anonymous. This is odd given that, for example, the names and designation of every member of the development group for the BTA/ACB/BTF, 2006 UK Guidelines, mentioned in the joint statement are freely available to all via the Internet. Why this cloak of anonymity for the authors of the joint statement? Are the same people both authors and reviewers of the joint statement?  

    Furthermore, the review apparently took place behind closed doors and certainly it seems that the requests to involve other interested parties [excluded from any deliberations by the RCP and the other organisations involved first time round] in order that all viewpoints could be discussed was not taken into account. Why not? This is another reason why there are major concerns regarding transparency.

    4] Validity – All the above seems to demonstrate a total lack of regard for the views of those hypothyroid patients, who could now come to harm as a result of the RCP et al joint statement which has apparently now been designated as a “position statement or guidance (but not a guideline).”

    So we request that the RCP et al, define the exact purpose of this document, which has been called different things at different times? Furthermore, as already stated the RCP et al were sent a few hundred references in relation to this subject from those concerned about the content of the joint statement, so the reviewers would and could not be ignorant of the existence of this mass of information. All Physicians, including the ‘anonymous ones’ who wrote the joint statement have a duty of care to all patients, [this includes keeping up to date with new research and information], otherwise lives could be put at risk.

    5] Credibility - The way that the review was conducted, appears contrary to the standards that the Royal College of Physicians should be expected to uphold, The President, Professor Gilmore has in the past expressed the sentiment that Physicians cannot take for granted the trust patients afford to physicians nor assume that physicians know best the care that patients want. That being the case why are hypothyroid patients not being listened to? – we urgently need to know the answer to this question.

  31. Lou Lou United Kingdom says:

    P Lynch said ...."A common misconception is that a patient must be comatose to be diagnosed with myxedema coma.  However, myxedema coma is a misnomer because most patients exhibit neither the nonpitting edema known as myxedema nor coma.  Instead, the cardinal manifestation of myxedema coma is a deterioration of the patient's mental status."
    And, "Patients with myxedema coma usually have longstanding hypothyroidism, although it may not have been previously diagnosedThey often demonstrate classic symptoms of hypothyroidism: fatigue, constipation weight gain, cold intolerance, a deep voice, course hair, and dry, pale cool skin."

    The symptoms of hypothyroidism/myxedema are: LOW blood pressure, bradycardia, no appetite, mentally dull/slow, tired, constipation, coarse dry thin hair, overweight by a few pounds only due to oedma (quickly gone once treatment started), pale, permanently cold and no energy ............ take it from one who has been there.

    These symptoms are quite contrary to the ones advertised on the internet.

    People with true hypothyroidism would be unaware they have it until diagnosed.

    I say again, no one could survive 20-30 years with undiagnosed true hypothyroidism and I stand by that.

    • Dawn Dawn United Kingdom says:

      Untrue statement

      'People with true hypothyroidism would be unaware they have it until diagnosed.'

      When you are so drowsy you sleep for 48/72 hours at a time and more, have impaired memory and need numerous layers of clothing you know you are hypothyroid. The Dr has a tendency to start listening when you mother shouts down the phone at him these facts!

      Been there often Lou, before diagnosis and after.
      There may be a more subtle slip into it for those who find these symptoms a normal part of living? Personally I always wanted to get out and do things so for me this wasn't so. Sorry you couldn't tell you were suffering from a terribly slow metabolism :O

  32. Lou Lou United Kingdom says:


    I almost forgot P Lynch.

    If you have ALL the above symptoms I listed above with HIGH cholesterol - you have hypothyroidism/myxedema  -  you dont need a blood test.

  33. Julie Shrive Julie Shrive United Kingdom says:

    I was given thyroxine because I managed to get to  the one spina bifida centre in the south and had CFS / fibromyalgia diagnosed privately . Now I suspect I need Armour??!! However I am  no longrer there because medical profession & NHS disregard Occulta [ mild form] [ when found re: chronic itis & bowel problems yet suspect relates to cardiac arrest and neuro problems which will become tias , stroke & dementia. Suspect ME could also be related .

  34. Sheila Turner and Eric Pritchard Sheila Turner and Eric Pritchard   says:

    Is the Royal College of Physicians and The British Thyroid Association  DELIBERATELY TRYING TO MISLEAD UK medical practitioners and patients into believing no studies have ever been conducted into using thyroid extract versus L-thyroxine only therapy? WHY are both the RCP and BTA deliberately choosing to ignore the recent studies by NHS endocrinologists Das et al., (2007) and Lewis et al., (2008) which found that Armour Thyroid treatment led to resolution of symptoms in certain groups of patients who were left symptomatic on thyroxine-only treatment.(1,2) The RCP, BTA also ignorer older studies into thyroid extract versus levothyroxine?(3-9)

    In the six references (used by the RCP to back up their statements), no references have been cited to back up their statements that synthetic T3 should not be used. With out the required medical evidence, their statement is merely opinion.


    Thyroid extract was the ONLY available therapy for more than 50 years before synthetic thyroxine was manufactured.  To quote Derry: ". . . by 1976 about half (52%) of the prescriptions written for thyroid hormone in the United States were for desiccated thyroid or other natural products. The best pharmacological authorities confirmed desiccated thyroid remains a remarkably, clinically predictable, safe and effective preparation which is well absorbed". (10) So why the continued misinformation perpetrated by the RCP and BTA?


    There is much evidence that Armour Thyroid is the most reliable of the desiccated thyroid preparations. Evidence is presented in the empirical use of Armour thyroid by Gaby that many people have hypothyroidism undetected by laboratory thyroid-function tests, and cases are reported to support the empirical use of Armour Thyroid. Treatment with desiccated thyroid has produced better clinical results than levothyroxine.(11-15) It is also well documented that Armour is often more effective and is better tolerated than synthetic T4, T3 and T4/T3 combination.(16)  This is because the T3 in natural thyroid extract is absorbed more slowly than synthetic (purified, unbound) T3. (17)


    Not only are whole glandular extracts often superior to T4 for the treatment of hypothyroidism, there is also evidence to suggest that such products are also superior to combined synthetic T4/T3 preparations.(18,19)


    Hypothyroid patients who still suffered classic symptoms of hypothyroidism on T4 only treatment, and who were switched to Armour thyroid extract became biochemically euthyroid and completely symptom-free.(20) Also, before the advent of the TSH test in the early 1970s, patients used thyroid extract in much higher dosages than nowadays.(21)


    There are advantages to using Armour that are not related to its T3 content.  Broda Barnes observed some patients treated with syntheticT4/T3 combination continued to experience residual symptoms, particularly dry skin and oedema.  Both symptoms resolved in 1-2 months when the treatment was changed to Armour.(22) . This observation suggests a third active substance is secreted by the thyroid gland. The most likely candidate is 3, 5-diiodo-l-thyronine (T2).  Although little was known about the function of this compound in humans, the widely held assumption that it is metabolically inert may be incorrect.  The fact is T2 is indeed very active in terms of metabolic effects. The manufacturers of Armour Thyroid have done no studies into the specific amount of the other thyroid hormones in Armour, T2, T1, calcitonin or any other 'T' hormones that are naturally occurring in the desiccated thyroid.  Nothing has been removed in the processing and many endocrinologists believe there is little (or no) information about T2 or monoiodothyronine (T1).  However, this is not the case. The use of T2 has been shown to increase hepatic oxygen consumption by about 30%.  The authors of one study discovered only T2 was active in stimulating rapid hepatic oxygen consumption.  They concluded that it acts rapidly and directly through activation of the mitochondria. (23) See also (24-34)


    L-thyroxine was introduced without any comparison with natural thyroid extract.  The Medicines Control Agency has continued its use without review.  Given that levothyroxine is the cheaper medication, one has to question why the manufacturers would not wish to demonstrate equal effectiveness.  Natural thyroid extract has been making patients better since 1894. The burden of proof lies with the synthetic manufacturers to demonstrate that it is as safe, effective and as consistent as Armour Thyroid. (35,36)


    Regarding the RCP reference  (Baloch Z, Carayon P, Conte-Devolx B, et al. Laboratory medicine practice guidelines. Laboratory support for the diagnosis and monitoring of thyroid disease. Thyroid 2003;13:3-126.)


    The RCP and BTA should be aware that thyroid function blood test results can be influenced by MANY factors, any of which should be taken into consideration, e.g.



        
    • Labelling errors

    •   
    • Bacterial contamination

    •   
    • Yeast/Fungal contamination

    •   
    • Clotting

    •   
    • Sampling errors

    •   
    • Sample preparation errors

    •   
    • Sample storage errors

    •   
    • Thermal cycling

    •   
    • Antithyroid antibodies (any)

    •   
    • Antibodies from any other cause

    •   
    • Presence of specific 'toxins' in the blood

    •   
    • Presence of pharmaceutical drugs (interferences) within the blood

    •   
    • The method of analysis being carried out e.g. radio-immune assay (RIA)

    •   
    • 'Systematic' errors in analytical equipment or methodology

    •   
    • Composite errors <> pre-analysis (not mentioned above)

    •   
    • MCT8 mutations


    Many individuals with classic hypothyroid symptoms are discouraged when they are told their TFT's are within the normal range. The question of whether they might be resistant to their body's own thyroid hormone is seldom considered. Yet, a disease known as thyroid hormone resistance can prevent thyroid hormone from reaching the body's cells.


    The discovery of MCT8 mutations explains laboratory discrepancies (37) e.g. cases in which the lab results didn't fit a particular pattern.  It also explains how thyroid hormone resistance can cause TSH to appear normal even with a low FT4.  In many instances only the TSH test is performed. If the TSH result is normal, and symptoms of hypothyroidism are observed, tests for FT4, FT3 and T3 should all be performed.


    None of these types of error are ever shown as being part of the reference range, but they all add to the unquantifiable 'unreliability' of the final number that appears on a lab report; stated to be within/outside a reference range. The labs expect, but often don't get, notification of antibodies found by other labs or by investigations showing antibody activity, to enable proper screening (dilutions) for likely errors. e.g. vitiligo, alopecia, ongoing autoimmune symptoms specific to such as lupus, autoimmune attacks on specific organs, histology samples, haematological examinations.(38) A search on Pubmed shows 126 such cases.


    The fact that the RCP and BTA have refused to acknowledge the hundreds of references to the studies, research and medical evidence made freely available to them from researchers, doctors and patients throughout the world is both deplorable and unscientific.


    References:


    1.  "Does synthetic thyroid extract work for everybody"? Das G, Anand S & De P. Endocrine Abstracts (2007)13 P316

      2.  "Improvement in quality of life in hypothyroid patients taking Armour Thyroid. Lewis D, Kumar J, Goulden P, Barnes D. Endocrine Abstracts (2008) 15 P359

      3.  Lavietes, P.H. and Epstein, F.H.: Thyroid therapy of myxedema: A comparison of various agents with anote on the composition of thyroid secretion in man. Ann. Intern. Med., 60:79-87, 1964.

      4.  Gorowski, T., Pucilowska, J., and Wernic, K.: Comparative effects of desiccated thyroid gland and sodium salt of L-thyroxine in the treatment of hypothyroidism. Pol. Tyg. Lek., 44(32-33):768-770, 1989.

      5.  Krenning, E.P., Docter, R., Visser, T.J., et al.: Replacement therapy with L-thyroxine: serum thyroid hormone and thyrotropin levels in hypothyroid patients changing from desiccated thyroid to pure thyroxine substitution therapy. Neth. J. Med., 28(1):1-5, 1981

      6.  Felt, V. and Nedvidkova, J.: Comparison of treatment with L-thyroxine and a dried thyroid gland preparation in patients with hypothyroidism. Vnitr. Lek., 28 (11):1067-1073, 1982.

      7.  Singh, S.P., Feldman, E.B., and Carter, A.C.: Desiccated thyroid and levothyroxine in hypothyroidism: comparison in replacement therapy. N.Y. State J. Med., 72(9):1045-1048, 1972.

      8.  Sawin, C.T., Hershman, J.M., Fernandez-Garcia, R., et al.: A comparison of thyroxine and desiccated thyroid in patients with primary hypothyroidism. Metabolism, 27(10):1518-1525, 1978.

      9.  McGavack, T.H. and Reckendorf, H.K.: Therapeutic activity of desiccated thyroid substance, sodium Lthyroxine and D, L-triiodothyronine: a comparative study. Am. J. Med., 20:774-777, 1956.

      10.  Derry DM. Breast Cancer and Iodine. Trafford Publ., Canada, 2001; 39.

      11.  Steven L. Richheimer, Charlotte B. Jensen. Response to "Liothyronine and Levothyroxine in Armour Thyroid?": 1987.Journal of Pharmaceutical Sciences. Volume 76, Issue 4. Pages 346-347

      12.  Rees-Jones RW, Larsen PR. Triiodothyronine and thyroxine content of desiccated thyroid tablets". Metabolism. 1977 Nov;26(11):1213-8

      13.  Rees-Jones RW, Rolla AR, Larsen PR. "Hormonal content of thyroid replacement preparations". JAMA. 1980 Feb 8;243(6):549-50.

      14.  LeBoff MS, Kaplan MM, Silva JE, Larsen PR. "Bioavailability of thyroid hormones from oral replacement preparations". Metabolism. 1982 Sep;31(9):900-5.

      15.  Gaby AR."Sub-laboratory hypothyroidism and the empirical use of Armour thyroid". Altern Med Rev. 2004 Jun;9(2):157-79

      16.  Hertoghe T, Lo Cascio A., Hertoghe J. "Considerable improvement of hypothyroid symptoms with two combined T3-T4 medication in patients still symptomatic with thyroxine treatment alone". Anti-Aging Medicine (Ed. German Society of Anti-Aging Medicine-Verlag 2003) 2004; 32-43

      17.  Alan R. Gaby, MD "Alternative Medicine Review" Volume 9, Number 2, 2004

      18.  Shames, RL, Shames, KH, Thyroid Power: 10 Steps to Total Health, Harper Collins Publishers, New York, 2001.

      19.  Saravanan, P., et al, Clinical Endocrinology 57 (5), 577-585, 2002.

      20.  Pearch, C.J. and Himsworth, R.L. "Total and free thyroid hormone concentration in patients receiving maintenance replacement treatment with thyroxine". Brit. Med. J., 288: 693-695, 1984.

      21.  Barnes BO. "Is there a third hormone in the thyroid gland? Which preparation should be used for treatment?" J Int Acad Prev Med 1982; November:38-39.

      22.  Horst C, et al. "Rapid stimulation of hepatic oxygen consumption by 3,5-di-iodo-L-thyronine." Biochem J 1989 Aug 1;261(3):945-50

      23.  Lanni A, et al. "Calorigenic effect of diiodothyronines in the rat." J Physiol 1996 Aug 1;494 (Pt 3):831-7

      24.  Goglia F, et al. "Action of thyroid hormones at the cellular level: the mitochondrial target." FEBS Lett 1999 Jun 11;452(3):115-20

      25.  Lanni A, et al. "Effect of 3,3'-diiodothyronine and 3,5-diiodothyronine on rat liver oxidative capacity." Molecular and Cellular Endocrinology. Volume 86, Issue 3. 1992

      26.  Lanni A, et al. J. Endocrinol. 136:59-64 1993.

      27.  O'Reilly I, Murphy MP. Acta Endocrinol. 127:542-546 1992.

      28.  Lanni A, et al. "3,5-Diiodo-L-thyronine and 3,5,3'-triiodo-L-thyronine both improve the cold tolerance of hypothyroid rats, but possibly via different mechanisms." Pflugers Arch 1998 Aug;436(3):407-14

      29.  Varghese S, Oommen OV. "Thyroid hormones regulate lipid metabolism in a teleost Anabas testudineus (Bloch)." Comp Biochem Physiol B Biochem Mol Biol 1999 Dec;124(4):445-5

      30.  J. Kvetny. Horm. Metab. Res. 24:322-325, 1992.

      31.  Moreno M, et al. "Effect of 3,5-Diiodo-L-thyronine on thyroid stimulating hormone and growth hormone serum levels in hypothyroid rats." Life Sciences, Volume 62, No.26, pp. 2369-2377, 1998.

      32.  Horst C, et al. "3,5-Di-iodo-L-thyronine suppresses TSH in rats in vivo and in rat pituitary fragments in vitro." J Endocrinol 1995 May;145(2):291-7

      33.  Baur A, et al. "3,5-diiodo-L-thyronine stimulates type 1 5' deiodinase activity in rat anterior pituitaries in vivo and in reaggregate cultures and GH3 cells in vitro." Endocrinology 1997 Aug;138(8):3242-8.

      34.  Matthews,G. "Armour Thyroid and Porcine Thyroid Extract Replacement Therapy". . June 29.2004.Medicines and Healthcare Products Regulatory Agency MHRA letter

      35.  Barnes, B MD, Hypothyroidism: The Unsuspected Illness, Harper & Row, 1976, pgs 142-144, 178-181

      36.  Willard Owen Thompson, Lawrence L. McLellan, Phebe K. Thompson, and Lois F. N. Dickie "THE RATES OF UTILIZATION OF THYROXINE AND OF DESICCATED THYROID IN MAN: THE RELATION BETWEEN THE IODINE IN DESICCATED THYROID AND IN THYROXINE". Department of Medicine, Rush Medical College, and The Presbyterian.

      37.  William Winter and Neil Harris, A New Type of Thyroid Disease, Advance for Administrators of the Laboratory, June, 2008: 46-50.

    38.  Sapin R. [Interferences in immunoassays: Mechanisms and outcomes in endocrinology] Ann Endocrinol (Paris). 2008 Nov; 69(5):415-25. Epub 2008 Jun 5.


  35. P Lynch P Lynch United Kingdom says:

    My main aim in writing to the Royal College of Physicians, was to present the other side of the scientific evidence.  The Royal College received much correspondence on the matter and between us we supplied hundreds of references.

    As for me, I was diagnosed 15 years ago, long before we had the internet where I could have been brainwashed.  I had had many tests for hypothyroidism over the years, but they all came back within range.  When I say all, I mean TSH and FT4, at the time I never had tests for anti-bodies or T3.

    I actually read an article in the health pages of a magazine, which although I already knew the symptoms of hypothyroidism, it really made me think that over the years, a diagnosis had been missed.

    I went to my local library and read bona fida, medical books on the subject and also sent off to the British Library for copies of medical papers that I had seen in the references.  

    A female doctor on looking at me said she couldn't believe the diagnosis had been missed as you only had to look at me, dry skin, so dry in fact it was like fish scales on my hands and I could peel it off, missing outer eyebrows, dry hair, muscle pain, then there was the anaemia, lack of concentration etc.

    I have just looked at the British thyroid Foundation list of signs and symptoms and they could have been describing me!

    Nobody ever measured my T3; nowdays, I have soft skin and my eyebrows have partially grown back, I don't have anaemia, but I have been left with the pain, but nowhere near as bad as it was.

    I know a top Endocrinologist told a friend of mine that having had the muscle pain for so long, that it would be unlikely to go completely.

    Regardless of that, I can do things now I couldn't do 15 years ago. Liothyronine has given me a life as I know it has others.  

    • Dawn Dawn United Kingdom says:

      Me too, P Lynch, I was a sufferer long before the internet and I suffered greatly for many years. I wasn't tested for T3 or TPO's either and it wasn't until I found out about these things on the internet I asked for a test and bingo, I had Hashimotos disease.

      I had been treated based on annual TSH tests with levo and looking back on my old medical notes I was going hyper /hypo all the time, my illness had been almost ignored in favour of bandaging the co morbid ailments that went along with it.

      Disgusting that anyone can endorse this behaviour.

  36. A Moeller A Moeller United Kingdom says:

    This seems like the Dark Ages and the Holy Inquisition hunting witches-only this time there is overwhelming scientific evidence against the Romans.

    This reminds me of "All truth goes through 3 stages". I wonder how long it will be until those obsolete statements by the RCP will gather dust on shelves and leave those who issued them, shame-faced.

    I moved to this country with its enlightened medical system two years ago, and started developing clinical signs of hypothyroidism. I was offered Thyroxine, which made me very ill-I learned about T4 toxicity, and likely I am not converting T4 to T3 appropriately. No other option was given to me. I am having to pay huge sums to find help from private doctors and practitioners, get tests done to find out what is the best course of action. Finding someone who will prescribe Armour or similar is probably more difficult than buying heroin here- not to mention the unacceptable shortages of natural thyroid which adds more suffering to those who cannot function without it.

    I had to resort to getting compounded hormone from a pharmacy in Europe which had no shortage issues. Now I will need help in finding correct T3 dosages to sort out my symptoms. The crime: Not responding to the Holy Grail, synthetic thyroxine.
    I hope physicians in this country will find some time to update their training and learn some clinical case taking.
    It's time the rule of the pharma giants stopped and someone started listening to real people.

    I cannot believe institutions like the RCP can carry on with this attitude of arrogance and ignorance in the 21st century.

    The medical establishment will have to wake up quickly because it will soon be hit with an epidemic of metabolic illness it is unprepared to deal with. If Britain wants to avoid having rising amounts of people disabled and on benefits due to appaling diagnosis and treatment, the medical system needs to be upgraded accordingly. Undertreated hypothyroidism leads to an increasing number of diseases with exploding costs for society and untold misery for the patient and their families.

    Environmental toxicity is likely to be one causative factor for hypothyroidism, along with genetic causes and prolonged stress. We are therefore not likely to see less of these problems, but rather much more. Let's hope a new generation of medical professionals will emerge who can live up to their code of ethics. They will not only have to know about ALL medical treatment options, but should ideally understand nutrition and detoxification as well in order to effect prevention of disease rather than practising fire-fighting.

  37. Jen Jen United Kingdom says:

    I've only just found these sites about the thyroid scandal. I've seen various doctors over the last 3 years with classic symptoms, weight gain, constantlethargy, sleep problems. aches and pains, dry skin, eyebrows falling out, raised cholesterol, hoarse throat, brain fog etc etc. Each time the doc suspects hypothyroid but when the tests come back 'normal' (TSH has varied from 2 to 2.4), says no treatment, just more tests for other stuff which of course also comes back normal.The same thing happened to my Mum some years ago, she finally got into the 'zone' for treatment, but only after many years suffering with thyroid symptoms.
    I've had enough, I want my life back, so I'm going to look for a private doctor or failing that I may reluctantly be forced to try self medication. I see that those GP's that do try to help patients are persecuted by the medical establishment. What a disgrace.

  38. E. M. Leslie. E. M. Leslie. United Kingdom says:

    I am acting for my now deceased daughter. She had impaired thyroid function following chemo- and radiotherapy and told me many times that the treatment she received for her thyroid impaired function was inadequate. Her original disease was Hodgkins disease. She was grossly overweight at the time of her death and had been so for some considerable time. I hope this may help others who have received similar treatment and have gone on to develop thyroid hypofunction.


The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News-Medical.Net.
Post a new comment
Post
You might also like... ×
Female adolescent blood donors more likely to have iron deficiency and related anemia