This website is dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.

RCP/BTA Failures Harming Approx. 300,000 UK Citizens Suffering Symptoms Of Hypothyroidism – Part 1

Anthony D Toft (past President of the Royal College of Physicians (RCP)) wrote: It is extraordinary that more than 100 years since the first description of the treatment of hypothyroidism and the current availability of refined diagnostic tests, debate is continuing about its diagnosis and management.

This statement exemplifies the blinkered attitude which seems to be that medical practitioners know all they need to know about the diagnosis and management of those with symptoms of hypothyroidism, so that further research and debate are unnecessary. [BMJ2003;326:295]

Extraordinary indeed!

INTRODUCTION

There has been significant concern by health care organizations and medical experts that physicians are placing too much reliance on consensus statements and failing to learn of new information presented in medical journals. Thus, they lack the ability to translate this new information into treatments for their patients. The concern is that doctors fail to practice evidence-based medicine, erroneously relying on what they have previously been taught and on expert societies instead of changing treatment philosophies based on new information as it becomes available. This is especially true for endocrinological conditions, where physicians are very resistant to changing old concepts of diagnosis and treatment despite overwhelming evidence to the contrary because it is not what they were taught in medical school and endocrinology residency”[183]

AIMS

The aim of this paper is to draw attention to, and provide evidence of the harm being caused to approximately 300,000 UK citizens (around 15% of the population currently being treated for thyroid problems), who are left to suffer symptoms of hypothyroidism, because of current diagnosis and treatment methods employed by the UK s endocrinology specialty. The 300,000 figure is approximately 0.5% of the total population, whilst also being 15% of those treated for thyroid problems. This figure ignores euthyroid hypometabolism victims, which may represent 6% of the total population.

Thyroid Patient Advocacy (TPA) is demanding change, by asking the Government to arrange an open meeting between members of the Royal College of Physicians (RCP), the British Thyroid Association (BTA), the Department of Health (DoH) and members of patient representative organisations that stand in diametric opposition to the present RCP guidance statement on the Diagnosing and Management of Primary Hypothyroidism.

TPA represents tens of thousands of sufferers in the UK, but was not approached to give their views when the RCP policy statement was originally formulated, and has still never been approached.

This paper seeks to evidence that the need for corrective action is long overdue, so that symptoms of hypothyroidism attributable to the whole of the thyroid system are properly investigated and treated. It also criticises the RCP policy statement and seeks to highlight its errors, which are enforced by the General Medical Council (GMC). It further criticises the British Thyroid Association (BTA) statement on Armour Thyroid v L-T4 monotherapy, which, as this paper will evidence, fails to take into account scientific research that has been available for over half a century.

PLEASE NOTE: There is NO validated published research showing that L-T4 monotherapy is safe and effective for ALL sufferers of hypothyroid symptoms. Therefore, the proposition by the RCP and the BTA that L-T4 monotherapy is safe and effective for all sufferers CANNOT and MUST NOT be relied upon.

EVIDENCE

There are seven distinct causes of symptoms of hypothyroidism, that are attributable to the thyroid system:

– hypothalamus deficiencies
– pituitary deficiencies
– thyroid deficiencies
– conversion problems
– reception problems
– chemical infrastructure
– excessive clearance

Despite this, the RCP and the BTA only provide guidance on identifying and treating one cause of hypothyroidism (defined by the RCP as under-activity of the thyroid gland), and they only recognise one of its hormones – thyroxine (T4).

TPA believes that the RCP and BTA both have serious omissions in their statements, resulting in a violation of the requirements laid down by the GMC. This is because they make no reference to peripheral metabolism or peripheral hormone receptor physiology. This is particularly worrying, given that the RCPs remit is education and maintenance of professional standards for physicians, and further to this, the BTA claims they are … the only national professional organisation in the UK composed of research doctors and consultants who are accredited by having completed higher professional training in thyroid and other endocrine diseases.

The RCP lays out a reasonable plan for the first step in their guidance: the vast majority of patients with suspected thyroid disease are supported very well in primary care by their GPs, and their condition, hypothyroidism or otherwise, is appropriately diagnosed and well managed”, but they then fail to follow this through.

Their plan is true for around 85% of those suffering symptoms, who are being treated with L-T4 monotherapy. However, what TPA is concerned about, are those 15% of the UK thyroid population who remain ill on L-T4 monotherapy, because they are suffering from deficiencies (post-thyroid), which are not being acknowledged.

The RCP further state that … some patients are inappropriately diagnosed as being hypothyroid (often outside the NHS) and are started on L-thyroxine monotherapy or other thyroid hormones, which will not only cause them possible harm, but leaves the true cause of their symptoms undiagnosed and therefore untreated.

TPA is concerned about the definition in the RCPs policy statement of hypothyroidism or otherwise. Are the or otherwise the 15% of the UK thyroid community who are not suffering because of under-activity of their thyroid gland, yet continue to suffer the same symptoms as hypothyroidism?

The RCP states: Patients with continuing symptoms after appropriate thyroxine treatment should be further investigated to diagnose and treat the cause.

They further state: We recommend that those patients whose thyroid blood tests are within the reference ranges but who have continuing symptoms, whether on levothyroxine or not, should be further investigated for non-thyroid causes of the symptoms.

However, the RCP then gives no recommendations or details as to what investigations should be undertaken, nor what tests should be done, nor do they acknowledge the possibility that such patients may be suffering from thyroid hormone deficiency in target tissues, eg Low T3 Syndrome or Euthyroid Hypometabolism.

This condition, which has been reported upon in medical literature for over half a century, is not being acknowledged in the endocrinology specialty, nor is it being discussed in conventional medical circles.

Furthermore, most medical practitioners do not seem to know what causes it, nor do they know what to do about it.

However, this condition is NOT caused by a problem with the thyroid gland. This is a crucial distinction, and it is what distinguishes Low T3 Syndrome or Euthyroid Hypometabolism from Primary Hypothyroidism. This condition cannot be treated with T4-only.

The endocrinology speciality also does not take into consideration the possibility that the cause for patients’ complaining of continuing symptoms on L-T4 monotherapy may also be due to many other things, such as:

– adrenal fatigue
– low levels of specific nutrients
– partial response to L-T4 monotherapy
– failure of the deiodinase enzymes
– receptor resistance
– food allergies
– the presence of systemic candidiasis
– other hormone imbalances

A timely and radical review is urgently needed by an increasingly knowledgeable and empowered public, as well as by those doctors who are currently struggling to provide what they know to be the most appropriate treatment for their patients.

Bearing all of these shortcomings in mind, it is the opinion of TPA that there is no validated published research showing that L-T4 monotherapy is safe and effective for ALL sufferers of hypothyroid symptoms, and therefore, the proposition by the RCP and the BTA that levothyroxine is safe and effective for ALL sufferers CANNOT and MUST NOT be relied upon.

CONCLUSIONS AND RECOMMENDATIONS

TPA are extremely concerned that the current positions of the RCP and the BTA advocating L-T4 monotherapy for ALL patients suffering symptoms of hypothyroidism, are causing real harm for at least 300,000 UK citizens.

TPA STRONGLY URGES THE RCP AND BTA TO WORK WITH TPA AND THYROID PATIENTS, IN ORDER TO BRING ABOUT AN END TO THIS STATUS QUO, WHICH TPA FEELS IS THE RESULT OF MANY FAILINGS, AS OUTLINED BELOW.

DETAILED FAILINGS

In the RCPs policy statement on the Diagnosing and Management of Primary Hypothyroidism and the BTAs statement on Armour Thyroid v L-T4 monotherapy BOTH HAVE FAILED MISERABLY TO TAKE INTO ACCOUNT THE FOLLOWING : PART 2: http://www.tpauk.com/forum/resources/52-errors-by-endocrinology-leaving-patients-to-feel-wretched.2544/

References: http://tpauk.com/forum/resources/references-endocrinology-failures.4/

Tags:

You must be logged in to post a comment.

Previous comments

I have been on levothyroxine for nearly 10 years, have never felt really brilliant in that time, and now my hypothyroid symptoms worsening. I have had a full blood screening, and told all is normal, but I am anything but well. It is causing a huge amount of stress, and I fear a strain on relationships. I just want help, and don’t know what to believe, or who is correct. Anne

Anne Pheasant,

I like many don’t have a thyroid due to cancer! It makes perfect sense to me that I wld need T3 to convert the T4 yet scored have only prescribed T4 for me for 13 years in 4 countries. I have never studied biochemistry but they have!!!! Great for all those who mono treatment works I wish I was one of them. Instead I have had chronic symptoms. Now I know the thyroid maths and what I can try to get back on my feet( bed ridden for past 3 months). Which means paying a private Endochronologist as my GP refuses to even discuss T3 aswell as a small fortune on the vital medicine I need and all the supplements. I can’t work and my husband has just been made redundant! This is nor right but what can we do about it!! I want to fight back the minute I get well enough to function but also don’t want to waste a single unit of precious energy!! What can we do?

sarah kobrus,

Oh, to find this site is a blessing indeed! I have been taking thyroxine for 33 years and consider myself lucky in that for the first 20 years I was relatively well, with the very odd blip. However, since 2005 I have been dreadfully unwell. My thyroxine dose has been up and down like a yoyo since then and my blood test results never seem to match the way that I am feeling. I am now suffering with chronic fatigue (again) after trying to lower my dose (again) because I was constantly sweating and shaking (and aggressive!). I did manage to get referred to a consultant in 2012, who spent 3 months fobbing me off and, after I suggested trying another brand (it didn’t make any difference), I finally gave up.
I just don’t feel I can go on much longer, having dealt with all the lows of life dominated and compounded by feeling constantly unwell. Like a previous writer, I am heading for 60 and would really like to end my days feeling well.

It is good to read all the comments and know that I am not alone. Good health to all of you.

Jackie

Jackie Taylor,

This is exactly what is needed. Dr’s listening to their patients. NICE are promoting the value of patient experience. In the absence of any definitive agreement between the views, surely the patient experience has to count?

Ursula,

The BIG Mistake is trying to deal with the medical profession.
At the present time, whilst we are still in the EU, it is the duty of the government to ensure that we receive the health care and medical treatment we require..
The government unlawfully abdicated that responsibility to the General Medical Council, in the Medical Act 1983, and the Medical Profession relies on required outcome research, such as: The European Thyroid Association 2012 Guidelines The Use of L-T4 + L-T3 in the Treatment of Hypothyroidism in support its own agenda.

Mighty Mouse,