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.

Jacqueline’s Own Horrific Story

PLEASE NOTE THE DATE OF THE SOUTH LONDON CORONER’S LETTER TO LET ME KNOW THAT JACQUELINE HADTAKEN HER OWN LIFE. THIS IS MORE THAN APPALLING!

Please note the links to various attachments which Jacque obviously enclosed in her letter to the Scottish Parliament Petition’s Committee, which the Coroner has failed to include.

From: Selena Lynch
Senior Coroner for the South London Area
The Coroners Office
St Blaise Building,
Bromley Civic Centre,
Stockwell Close,
Bromley, BR1 3UH
Telephone 020 8313 1883020 8313 1883 Fax 0208 313 3673

To: Ms Sheila Turner,
Squirrel Cottage,
Ickornshaw,
Cowling near Keighley,
North Yorkshire,
BD22 ODH.
27th August 2015.

Dear Ms Turner,

Please find enclosed a letter and enclosures from Ms Jacqueline Falkowski.

I am hoping that her family have been in contact with you regarding her very unfortunate death in January 2015.

Our Senior Coroner, Ms Lynch has requested that this is sent to you with sincere apologies for the delay. She has not had a PA for an extended period of time which had resulted in this not being dealt with and sent sooner.

Yours sincerely
Tina Thomas
(Coroners Officer)
_________________________________

Please note that the bold type below is by Author.

FROM: JACQUELINE FALKOWSKI
TO:Mr David Stewart MSP
Convener
Public Petitions Committee
Scottish Parliament
Edinburgh
EH991SP
11 January 2015

Dear Mr Stewart

IN SUPPORT OF THE SCOTTISH PARLIAMENT PUBLIC PETITION PE1463 ON EFFECTIVE THYROID AND ADRENAL TESTING, DIAGNOSIS AND TREATMENT

If you are reading this letter I have successfully ended my life after an interminable battle with hypothyroidism. Until doctors learn to listen and work with the patient instead of trying to control the patient there will be many more deaths after me, as there have been many before me. I have been caused tremendous unnecessary suffering and irreparable damage to my body and brain (cognitive function, memory and personality) from being left undiagnosed for at least 26 years (I had my first serious thyroid episode when I was 24 years old and could not leave my bed for three months) but was not diagnosed at the time because my Thyroid Stimulating Hormone (TSH) never went over 10, and then I was put on the wrong thyroid hormone (TH) therapy, thyroxine (T4) instead of liothyronine (T3), because T4 is the only accepted form of TH therapy in the UK, and because GPs and endocrinologists do not recognise conversion issues or peripheral cellular resistance to TH or T3 deficiency – all of which I have and which the TSH doesnt pick up – and then being treated for years on an inadequate amount of TH (replacement only) therapy. ‘Four 2003 Studies of Thyroid Hormone Replacement Therapies: Logical Analysis and Ethical Implications” by the late Dr John Lowe of Thyroid Science. [1]

I have had an enormous uphill battle trying to get doctors to believe me and take my symptoms seriously. My GP was adamant that my thyroid was fine and my symptoms were all in my head. When my slim size 8 frame started to expand to a size 14 (now 20), I was reprimanded for eating too much and not exercising despite being a healthy eater, a sailor and extremely active. My GP continued prescribing medications for each individual hypothyroid symptom I was suffering, which must have cost the NHS a fortune. He even went so far as to tell other doctors and consultants that he believed my symptoms were all functional and caused by a psychiatric disorder, even though I had never been diagnosed with one. It was humiliating and frustrating!

Excerpt from my GPs letter to the Rheumatologist:

I personally wonder there may be a functional component to her symptoms as she has a chronic history of anxiety and depression and I feel that this is contributing to the significance of her symptoms.”

I had anxiety because he didnt believe my symptoms were real – he persistently stonewalled me – and meanwhile, my hypothyroidism symptoms were becoming debilitating and intolerable. I eventually used the internet to diagnose myself with thyroid disease by analysing my symptoms, but my GP refused to believe it was my thyroid. When my parotid gland swelled up for the third time, he referred me to an ENT specialist who told him to refer me to a rheumatologist for suspected Sjgrens Syndrome, who in turn told my GP that he believed it was my thyroid and to refer me to an Endocrinologist. It took a further year before I saw the endocrinologist and he diagnosed me hypothyroid. I have spent five years bedridden and feeling near death and I am now going into my seventh year being housebound. Depression is a consequence of years of undiagnosed and then inadequately treated thyroid disease.

Excerpt from my GPs letter to my first Endocrinologist:

“I would be grateful for your help with this 45 year old lady who I am finding quite difficult to manage. There is no doubt that Mrs Falkowski has a previous history of psychiatric problems related mainly to anxiety and depression. She presents with a history of chronic tiredness associated with a weight gain.”

I have never been diagnosed with psychiatric problems so this statement is untrue and incredible. It defies belief that the Parliamentary Health Services Ombudsman (PHSO) thought this was acceptable when I complained to them. Chronic tiredness and weight gain are typical hypothyroid symptoms!

Excerpt from the above endocrinologist to my GP:

“She may benefit from counselling/Psychiatric assessment if this has not been carried out in the past I appreciate this is a difficult subject especially if she feels unwell because of her thyroid condition. Nevertheless it may be worth excluding any psychiatric component that could respond favourably to treatment.”

It is negligent and unethical to prescribe T4 to a patient who is unable to convert thyroxine (T4) into triiodothyronine (T3) in the tissues and is resistant to TH at a peripheral cellular level.

Because I have the intelligence to know when a doctor is causing me serious harm and the temerity to stop his harmful protocol, research what I should be taking and source it, I am labelled by him as having a psychiatric component to my character. The arrogance of this man is staggering!
The link to a 1995 study firmly reveals that T4 only treatment does not ensure that all tissues are free from hypothyroidism aka euthroidisim, and is thus not a recommended treatment – Replacement therapy for hypothyroidism with thyroxine alone does not ensure euthyroidism in all tissues, as studied in thyroidectomised rats’.[2]

Conclusions from this attached study show that more than 20% of patients, despite normal TSH levels, do not maintain FT3 or FT4 values in the reference range, reflecting the inadequacy of peripheral deionisation to compensate for the absent T3 secretion. It concludes that a more physiological treatment than levothyroxine monotherapy may be required – ?Levothyroxine monotherapy cannot guarantee euthyroidism in all athyreotic patients?.

Interestingly (but not surprisingly), the late Dr E Chester Ridgeway (former ATA President and Board Member) explained it well in a Food and Drug Administration meeting in 2005:

“T4. . . is not the active ingredient. T3 is the active ingredient, and it’s the thing that accounts for the thyroid hormone action. As I’ve been reminded many times, there are no intracellular events that we know that can be described by T4 at the level of the nucleus. Only T3. T4 is not the active compound. Likewise, the site of action is in the nucleus. The site of action is not T4 in the plasma.” Dr. E. Chester Ridgway

As a consequence T4 is not a TH; it is an inactive storage prohormone, it is a precursor to a hormone and has no intrinsic biological activity of its own. It is T3 which is the active TH which every cell in our brain and body needs to function. Without T3, we die!

Excerpt from another GP in the Practice to a consultant Psychiatrist:

I can confirm that she still requires a referral. She has chronic anxiety and chronic depression. She has been on long time Moclobemide and Diazepam. She still feels very depressed. She has numerous other physical complaints, lethargy, gut pain, back pain, allergies. She is very resistant to the idea that most of her symptoms are functional.

This was after I had been diagnosed hypothyroid and put on T4 TH (replacement only) therapy for a year but this did nothing for me except make me toxic and disabled. I certainly wasnt depressed – I was frightened, desperate, confused, ashamed and frustrated because I was repeatedly dismissed by the GPs in the practice – no one was listening to me or my pleas for help. The TSH did NOT reflect just how gravely ill I was. It is the most insensitive, inhumane, inadequate and useless test to detect tissue hypothyroidism or any thyroid disease. It is the cause of so much misery and deaths amongst millions of thyroid patients worldwide. The false belief these ‘Experts have that the TSH detects ALL hypothyroidism is dangerous idiocy and corrupt .’Thyroid Function Test – time for a reassessment and Thyroid hormone replacement: an iatrogenic problem’ by Denis OReilly, consultant clinical biochemist [3] who states:

“Currently, it is arguably the most contentious issue in clinical endocrinology. The current controversy and patient disquiet began in the early 1970s, when on theoretical grounds and without proper assessment, the serum thyrotropin (TSH) concentration was adopted as the means of assessing the adequacy of thyroxine replacement. The published literature shows that the serum TSH concentration is a poor indicator of clinical status in patients on thyroxine. The adequacy of thyroxine replacement should be assessed clinically with the serum T3 being measured, when required, to detect over-replacement.”

If the TSH didnt exist, I would have been diagnosed hypothyroid by clinical signs and symptoms alone, as doctors have done for over 120 years prior to the advent of the TSH in the early 1970s. I would have had a choice of TH therapy too, instead of this rigid T4 only protocol imposed on thyroid sufferers, and I would have been prescribed T3 at a therapeutic dose best for me, instead of tranquilizers, antidepressants and sleeping pills. I was never warned just how easily one could become dependent on benzodiazepines or how lethal they were to come off, and I was in tolerance withdrawal for many years without knowing. And the Ombudsman said they had done nothing wrong!

It doesnt stop there – nearly every letter refers to some psychiatric disorder, and my medical notes are also full of the same nonsense.

The reason I mention this is because I am not the only thyroid patient who has been subjected to doctors labelling an undiagnosed thyroid condition with psychiatric disorders. The British Thyroid Foundation (BTF), British Thyroid Association (BTA), Society for Endocrinology (SfE), Association of Clinical Biochemists (ACB), British Society of Paediatric Endocrinology and Diabetes (BSPED), Royal College of Physicians (RCP) and the Royal College of General Practitioners are ALL guided by the work of the American Thyroid Association (ATA), (in fact, some in the BTA, BTF and ACB are members and contributors to the ATA,[4] – who actively encourages this behaviour in their 2014 Guidelines for the Treatment of Hypothyroidism.

Please read – “Whose Thyroid Hormone Replacement is it Anyway?” 2006, in the Journal of Clinical Endocrinology – by former BTA President, Professor Anthony Weetman,[5] who has some influence within the American Thyroid Association. This article, which is a frightening view into the mind of many of today’s endocrinologists, has been cited in the ?2014 ATA Guidelines for the Treatment of Hypothyroidism’ .[6] ?2012 ETA Guidelines: The Use of L-T4 + L-T3 in the Treatment of Hypothyroidism’ [7] ?2007 ETA Clinical Aspects of Thyroid Disorders in the Elderly, and the ?2006 UK BTA, BTF and ACB Guidelines for the Use of Thyroid Function Tests.[8]

Professor Weetman also made a derogatory, anti-patient speech at the ATA 2013 Spring Symposium called “Challenges of Therapy: Dissatisfaction with Thyroid Hormone and Somatisation Disorder“.[9] He also won an ATA award. If you watch the video on the ATA website, you will see that his third slide shows a ‘before’ photograph of a lady with no hair, showing all the signs of low thyroid hormone, and a second photograph after she had been treated (in 1892) with natural thyroid extract injections. He failed to tell his ATA audience that George Murray used natural thyroid extract injections from a sheep,[10] and left the viewers believing this lady had been treated with synthetic levothyroxine monotherapy and a TSH in keeping within the reference range .

I would have expected that Professor Weetman would have known that in 1892, thyroxine had not yet been recognised nor patented and therefore not even been available for the treatment of hypothyroidism. The TSH had neither been discovered then.

It is of concern that an endocrinologist who is head of all UK medical schools, a member of the General Medical Council, a member of the Royal College of Physicians, Council Member of the Society for Endocrinologists, past President of the British Thyroid Association, past member of the Executive Committee of the European Thyroid Association, and holds numerous other positions of importance within the field of endocrinology, has, deliberately or not, misrepresented the true facts.

To add insult to injury and in a stunning display of medical condescension, his OPINION was incorporated into the 2014 ATA Guidelines below:

One mental health disorder that has been hypothesized to be overlooked in the context of hypothyroidism is somatization disorder, which warrants evaluation and possible treatment by a mental health professional. Somatization disorder is a complex disorder in which a range of physiological sensations and complaints manifest in response to a complex psychological or abuse history It is not a factitious disorder or malingering. It has been hypothesized that patients with somatization disorders, who have been treated for hypothyroidism, may persistently complain of a range of symptoms associated with hypothyroidism despite normal laboratory testing”.

Such patients are typically driven to a range of multiple practitioners, who may do multiple workups, and even unnecessary procedures. Such patients are frequently at risk for a range of iatrogenic harms, such as risks from unnecessary surgeries. They may also pay large sums of money for non-standard alternative therapies to deal with their physiologic complaints in an attempt to ?prove? they are real (as to the patient, they are), and may become belligerent and combative when told they are euthyroid. Patients with somatization disorders are frequently misdiagnosed and mismanaged, with complicated medical histories – frequently because they seek out so many subspecialists. Somatization disorder is overwhelmingly diagnosed in females, with current hypotheses that it may be a disorder of affect regulation or a complication or manifestation of a history of physical or sexual abuse. Recent data suggest that 1 in 3 women worldwide have been sexually or physically abused in their lifetimes domesticvioiencestatistics.org . Somatization disorder should be managed in conjunction with a mental healthcare provider to rule out other underlying psychiatric problems, including personality disorders.”

“In patients with persistent complaints of hypothyroidism, and chronic pain and malaise, all organic causes should be ruled out, followed by referral to a mental health practitioner to screen for somatoform disorder. Patients suspected of somatoform disorders should be provided with sensitive discussion in which the referral is explained, in which trust is maintained. Patients should understand and appreciate that their symptoms are not factitious, and are ?real? and may have causes that are rooted in psychological trauma, rather than an organic problem with physiologic causes”.

Either they are delusional or this is a cancerous act of denial by the endocrine profession. As the problem gets worse, they become even more creative in their thinking about it (or not thinking about it). They distort language and logic to rationalize and justify their behaviour. Nothing not facts; not the use of reason, logic, or the scientific evidence will make them re-evaluate that view.

Its not complicated, or philosophically difficult. If you have an opinion, and nothing else, its not science. If you refuse to change your opinions, its not science. Most of the Guidelines on Hypothyroidism have been based on opinion, and the endocrine profession has refused to change most of that opinion since the TSH and levothyroxine became the ‘gold standard to diagnose and treat thyroid disease in the early 1970s. How can anyone imagine that any profession would ever experience progress, much less scientific progress, if it refuses to change its opinions, themselves based on nothing but prior opinion? Opinion breeds ignorance, while science is the father of knowledge. They mistake their opinions for science.

It is a dangerous precedent to set and shows passive aggressive behaviour by Professor Weetman and his ATA, BTA and ETA colleagues towards female thyroid patients who do not do well on T4 monotherapy and vehemently oppose the hypothyroidism guidelines – with reason.

Why is it that this so called ‘somatoform disorder is reduced or resolved by TH therapy, and nothing else? Antidepressants dont work, other medications dont work – its only TH therapy that makes those symptoms go away. Why is it that the endocrine profession is the ONLY medical profession in the world where patients unite globally to voice their frustration? There are more patient supports groups for thyroid than any other disease.

These ‘Experts would much rather prescribe mind altering antipsychotics to their patients instead of a trial of TH. I have a 480 page document of comments from all over the world, taken from the ATA Facebook page before they were deleted (and patients blocked), opposing the new guidelines and the psychiatric allegations in them. These guidelines warn physicians not to treat any patient, no matter how symptomatic, unless the diagnosis is ?biochemically confirmed” i.e. unless the TSH is above 10 or the FT4 below the laboratory’s reference ranges. In sum, GPs and Endocrinologists are expected to accept this TSH-T4 reference range thyroidology on faith and to ignore their patients signs, symptoms and relative TH levels – and, instead, refer them to a psychiatrist. It is deliberate abuse by the male endocrine profession towards their female patients.

Why are they pig headedly refusing to listen to us? Why wont they hear us? My reasoning is besides loss of academic and pharmaceutical remuneration for themselves and their organisations, their egos wont allow anyone proving them wrong because they have gambled their entire careers on the hypothesis that levothyroxine monotherapy is the only proven form of TH therapy, and that the TSH is the only diagnostic test that can accurately diagnose any thyroid condition, and if they dare leave the herd, they will be ostracized for thinking differently. Woe betides them if they dare to treat the patient, and not the numbers!

Another reason is if patients use either T3 or NDT therapy at a therapeutic dose that makes them well, their TSH and fT4 levels will automatically be lowered or suppressed, so testing these would prove pointless. This would cost the pharmaceutical companies billions in lost revenue.

In June 2013, the British Medical Journal published an article titled ?Evidence Based Medicine: Why we cant trust clinical guidelines’,[11] (Published 14 June 2013). Author Jeanne Lenzer describes how drug companies can negatively influence members of committees that create clinical guidelines, to the detriment of patient care.

It is a huge money-spinner for the pharmaceutical companies who fund both the guidelines and the associations responsible for writing the guidelines, to keep patients ill. The longer they keep us ill, the more illnesses we manifest and the more drugs they sell, especially psychiatric drugs.

There should be a thorough academic and drug industry conflict of interest investigation conducted into the past and present members of the BTF, BTA, SfE, ACB, RCP and BSPED responsible for writing and endorsing the Statements and Guidelines on Hypothyroidism in the UK, and the choice of research used to promulgate these guidelines despite overwhelming scientific evidence to the contrary, including who funded the studies they are sanctioning. This should include any benefits by receiving a salary, royalty, intellectual property rights, consulting fee, honoraria for promotional speakers bureau, ownership interest (e.g., stocks, stock options or other ownership interest), or other financial benefit. PE1463/QQ Thyroid Patient Advocacy Letter of 4 March 2014 already shows undeclared conflicts of interest.

The ATA are funded by AbbVie (Synthroid), Pfizer (Levoxyl) and Akrimax (Tirosint) and they have their own peer reviewed online medical journal, ‘Thyroid, which serves as a resource for the BTA (who are funded by RSR Ltd, Pfizer (Levoxyl), Novonordisk and others not on their website), the ETA (funded by Merck Serona, Brahms, Astra Zeneca, Eisai, IBSA International, Bayer Schering Pharma, Genzyne, Exelixis, Thermo Fisher Scientific) et al. The studies in ‘Thyroid are all biased towards levothyroxine. The ATA task force members (including Professor Graham Williams et al) have individually or as a group benefited from the drug company sponsorship, so are not in a position to have made truly unbiased decisions. It’s likely that all have attended at least one, or many, ATA events that have been sponsored by these same levothyroxine manufacturers.

In October 2011, it was announced in PR Newswire that Knoll Pharmaceutical Company (now Abbvie) committed a $1 million grant in support of the ATAs Endowment for Thyroid Discovery. AbbVie has a long history of collaboration with the ATA and other thyroid professionals globally.

Its no wonder the ETA, BTA, ATA and RCP guidelines on hypothyroidism are the same because pharmaceutical companies are funding the authors and the guidelines  All ETA Guidelines are funded by Merck KGaA makers of levothyroxine, Euthyrox, which is also used in the UK .

We currently have a system of guideline creation that relies on three things being true – and if they are to be safe, all three things:

1. That the clinical trial data are not corrupt, or biased;

2. That negative data are made available when requested;

3. That the medical experts tasked with creating the guidelines are completely unaffected by their financial conflicts of interest.

The fact is that none of these critical requirements are followed – even remotely. The public are most certainly not being protected. We have left the foxes in charge of the chicken coop, with entirely predictable results. Its time for the government to start doing what it is there to do, i.e. ‘protect the public.

These self-professed ‘Experts go further by stating: ‘Somatization disorder is overwhelmingly diagnosed in females…

Of course they would say that – we wouldnt expect anything less from these idiots considering that thyroid disease is a womens disease. So we are being left undiagnosed, inadequately treated and mistreated because we cannot tolerate THEIR choice of TH therapy, levothyroxine, and because we arent getting diagnosed on THEIR ‘gold standard TSH, and because we have a thyroid condition not recognised or understood by THEM, who, in an attempt to make us look like the crazy ones, have branded us with a psychiatric disorder to boot in the hope that this will silence us for good. The incredulous thing about this is that they have NO EVIDENCE that patients on levothyroxine replacement are clinically euthyroid. It really cant get any more preposterous than this and is outright criminal behaviour!

The Equality Act 2010 states that Discrimination can come in one of the following forms:

    • direct discrimination – treating someone with a protected characteristic less favourably than others

 

    • indirect discrimination – putting rules or arrangements in place that apply to everyone, but that put someone with a protected characteristic at an unfair disadvantage

 

    • victimisation – beating someone unfairly because theyve complained about discrimination or harassment

This is direct and indirect discrimination and victimisation of women by men; the majority of endocrinologists are men and thyroid disease is a womens disease. The guidelines on hypothyroidism may apply to everyone but it puts women at a distinct unfair disadvantage. It is victimisation when thyroid sufferers repeatedly complain to the BTF, BTA, SfE, RCP et al that their guidelines are flawed and discriminatory towards women, and provide them with substantial scientific evidence to back this claim, only to be ignored and then further humiliated by branding us with a psychiatric disorder then forced to comply with their seriously flawed guidelines, testing and T4 only’ protocol despite it violating our health and wellbeing. Treating us with malevolence and contempt has left millions of thyroid sufferers chronically ill, disabled, and prematurely dead.

It appears these organisations can kill off innocent people without impunity because theyre not accountable to anyone or anything except each other, the pharmaceutical companies, their egos and their wallets.

The Equality Act 2010 states that you should be protected against discrimination as a consumer and when using public services; the NHS is a public service and every undiagnosed and inadequately treated thyroid sufferer is a consumer who is being discriminated against because their condition is not understood or recognised by the mainly male endocrine profession. Sufferers of undiagnosed and poorly managed hypothyroidism are also at a distinct disadvantage because they are ill, and have been for many years.

When I was finally diagnosed with hypothyroidism, not one GP apologised for getting it wrong and keeping me ill for so many years, and for not believing me and, in fact, did not believe the diagnosis and continued to treat me dismissively despite still being gravely ill. One GP went so far as to ask me if I had a personality disorder because I could not tolerate T4. The PHSO found this acceptable!

My complaint to the PHSO against five GPs in the practice took over two years to complete because I was so hypothyroid from inadequate TH therapy and my cognitive function had shut down, but the PHSO believed my GPs had done nothing wrong by ignoring my symptoms and not referring me to an endocrinologist sooner, because they had followed the Royal College of Physicians Policy Statement which states that some patients whose TSH level is greater than 10 mUI/L may benefit from treatment with thyroxine (T4)”.

This is an intolerable situation for me, and millions of others. First, my TSH might never get over 10, or if it did, it would have taken several more years to do so, and I was already in myxoedema coma and drifting in and out of consciousness with a TSH of 5.6. This is NOT unusual despite the attached study, Myxedema coma in a patient with subcinical hypothyroidism.[15] Secondly, I cannot tolerate T4 at all as I cannot convert T4 into T3 in the tissues and am resistant to TH at a peripheral tissue level, and therefore need supraphysiological doses of T3 only to keep me alive and functioning.

Because of the RCP Policy Statement, I was forced to remain on T4 for over a year and not one doctor would offer me an alternative therapy despite complaining of intolerable T4 toxicosis and debilitating hypothyroid symptoms because the T4 was not working. I was only offered T3 monotherapy approximately eight months after I started self-medicating with T3, but the dose offered was insufficient to alleviate my symptoms and was then further reduced, and so I was forced to continue buying my T3 over the internet.

The battle to get a repeat prescription for T3 became such an issue and more problematic than it was worth (it was even put on Acute prescription at one point without warning), and I have been put through so much by doctors with this disease, and have no fight left in me to go on, which is why, on 23 March 2014, I made a very firm decision to get as much of my affairs in order that I could humanely do whilst still so ill, and to end my life. I would never have to see another doctor again or go through another Groundhog Day TSH dominated consultation.

Its incorrect and even negligent to assume that the entire global population has exactly the same TSH, T4 and T3 set point and that all cases of hypothyroidism share the same cause and require the same treatment. Or for the RCP et al to state in their hypothyroidism Statement that T3 must not be prescribed as it is harmful and can cause loss of bone density and heart problems without providing any robust scientific evidence to support their claim, especially since NDT (which contains T4, T3, T2, T1 and calcitonin to strengthen bones) has been in use for over120 years, and T3 for 65 years, with no evidence of either causing harm.

In fact, George R Murray first published a description of long term successful thyroid extract treatment (28 years) of a patient with my oedema in 1920. His treatment was quickly adopted in North America and Europe. The first recorded American use dates to 1891 by a woman who was still taking it 52 years later at 84 years of age.

These self-professed Experts claim that there is little or no evidence to support T3 therapy but this is highly hypocritical since there were NO T4 studies before T4 was marketed in 1949 by Glaxo Laboratories.

Ill explain:

On Christmas day 1914 at the Mayo Clinic, Kendall purified thyroxine crystals, which became commercially available. Harrington identified the structure of thyroxine in 1926 and synthetic thyroxine was available for clinical use by the 1930s. Since the generation of biologically active T3 by the peripheral conversion of T4to T3 was documented in 1970, levothyroxine monotherapy become the mainstay of treating hypothyroidism, replacing desiccated thyroid and other forms of thyroxine and triiodothyronine combination therapy.

Prior to August 2000, levothyroxine sodium was an UNAPPROVED marketed drug (grandfathered) just like natural thyroid extract (NDT) had been since 1890. It was introduced in the 1950s as a more pure, synthetic form of Thyroid USP (Armour).

In 1997 there were at least 37 manufacturers or re-packagers of levothyroxine sodium tablets. Between 1990 and 1997, there were 10 recalls, 150 lots, and 100 million tablets of levothyroxine content uniformity, sub potency, and stability failures. In an effort to standardize levothyroxine sodium tablets, and to reduce the instances of therapeutic failures, on 14 August 1997, the FDA declared levothyroxine sodium tablets a new drug. Sponsors wishing to continue to market their product needed to submit an NDA or file a citizens petition describing why an NDA was not necessary. Between June 1999 and July 2001, nine sponsors submitted stand alone’ NDA applications. The first T4 product was approved in August 2000.

NDT has never had so many problems so why is it condemned to a black hole by the Experts? They cite concerns about hyperthyroidism from surges of T3 following ingestion, variability in hormonal content, and that it doesnt contain the same T4:T3 ratio that is produced in human thyroids – but then neither does T4 monotherapy. These are not valid reasons. They have ignored the millions of people who were, and still are, taking NDT over 120 years later with highly satisfactory results. Present thyroid function tests (TFTs) have not been validated in terms of their relation to disease frequency and treatment outcome, and it has never been demonstrated that patients on thyroxine replacement are clinically euthyroid. There is no robust evidence to support such extraordinary proclamations. The only conclusion is that NDT cannot be patented therefore the pharmaceutical and thyroid professions would suffer massive financial losses if NDT became a preferred treatment. Antipsychotics and other medications used to treat inadequately treated hypothyroidism would also no longer be necessary.

In the 1950s, liothyronine was discovered by Jacques Gross and Rosalind Pitt-Rivers. The FDA approved T3 in May 1956. T3 had been in clinical use for 17 years (NDT, which has T3 in it, was already in use for over 80 years) before TFTs became the gold standard for diagnosing and treating thyroid disease, around 1973. Thats more years and more subjects than any randomised clinical trial published. To this day, there is no solid evidence or record of patients suffering loss of bone density, increased fractures, osteoporosis or heart disease from the therapeutic use of T3 or NDT in that time. In fact, bone and heart disease are often accompanied with undiagnosed and inadequately treated hypothyroidism (with the TSH being the biggest cause of this).

I have suffered years of malpractice and negligence from doctors because my condition is not recognised in the hypothyroidism guidelines. I have also been misdiagnosed with primary hypothyroidism by my current endocrinologist, despite being on 280 mcg T3 a day because Im unable to convert T4 into T3 in the tissues, and am resistant to TH at the peripheral tissue level.

It is possible to have more than one type of hypothyroidism but by saying I only have primary hypothyroidism he has effectively banished me to being treated in accordance with the RCP Policy Statement. I may have adrenal insufficiency, nutritional or genetic abnormalities but these have never been investigated.

My current endocrinologist has been trying for the last three and a half years to reduce my T3 so that my TSH fits neatly within the reference range (RR), and totally ignores my fT3 which is always well within the RR, and the damage this has caused my body and brain is irreparable. Supraphysiological doses of T3 is not unusual for some thyroid hormone resistant patients and the late Dr John Lowe of Thyroid Science who rebutted the RCP and BTA Guidelines was on 180 meg T3 for over 20 years without any signs of osteoporosis or heart problems. His wife, Tammy, will confirm this. It is impossible to maintain my TSH within the RR as is called for in primary hypothyroidism on 280 mcg T3. For my TSH to be within the TSH RR I would have to be on 5 mcg T3 only which would NOT keep me alive.

I have accepted that I will never get a correct diagnosis and treatment which is why I have no choice but to take control back from doctors and end my suffering myself. I cant afford to pay for this supraphysiological dose of T3 for the rest of my life and it only just keeps me alive, it doesnt make me well, and years of begging for further investigations has fallen on deaf ears.

There has been substantial research since the commercialisation of the TFTs over 40 years ago that is seriously flawed because they did not screen out subjects for hyper and hypothyroidism (the TSH cannot do this effectively) and subjects were maintained on inadequate levels of T4, T3 and NDT in order to keep their TSH within the RR, leaving them symptomatic, or in a case like mine, the T4 would have acted like a placebo to start with but then caused toxicosis. Subjects using NDT or T3 were put on a pittance of a dose to keep their TSH within range and were also not dosed correctly – doses should have been titrated due to the short life of T3. In reality, patients tend to figure out when is the best time to titrate their dose, or not, considering on the individual, which cannot be truly depicted in a randomised clinical trial. See Richard Smith – Medical Research Still a Scandal.[16]

While a suppressed TSH may be an indication the patient is hyperthyroid, this is only the case 20% of the time. 80% of the time a suppressed TSH was shown not to be an indication that the patient was hyperthyroid or receiving too much TH therapy. Unfortunately, endocrinologists lack of ability or confidence to clinically evaluate a patients thyroid status, and lack of understanding of the limitations of standard TFTs has resulted in the majority of hypothyroid patients receiving inadequate doses of TH therapy. The risk of osteoporosis from suppressed therapeutic doses of TH therapy has been based on flawed studies and is exaggerated. If all patients were on therapeutic doses which resolved their symptoms, the majority would have a low or suppressed TSH (and fT4 if on T3 or NDT) so there would be no need for TFTs to manage the patient. This would signify a huge financial loss to the profession.

How many more people must die because their condition is not being recognised, diagnosed or treated correctly because of the Royal College of Physicians Policy Statement and the Royal College of General Practitioners who inter alia have suggested that patients should not be diagnosed with hypothyroidism if the TSH is below 10? Since this Statement goes beyond the scope of primary hypothyroidism and trespasses upon exo-endocrine functions, symptoms, and therapies, it is contradicting medical science and causing havoc among patients and physicians.

Article 29: Magna Carta No Freeman shall be taken or imprisoned, or in 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.

I personally believe that there should be NO guidelines to diagnose and treat hypothyroidism. Doctors should be made to think for themselves and taught how to diagnose and treat thyroid’ disease by clinical signs, symptoms and history of the patient as they have done for over 120years, without restrictions on which TH is best for the patient, or how much is needed to maintain their good health. Guidelines are restrictions and obstructions and are heavily influenced by pharmaceutical companies and biased studies, and should good doctors who think for themselves stray from them they will be brought up before the GMC and disciplined. What is needed is more practical training, more experience, less regulations, fewer guidelines.

The difficulty with writing new guidelines that have a difference of opinion from the established medical world is that these so called peer reviewed journals are very much influenced by these self-professed Experts who proudly proclaim that they are on the Editorial Board of all journals of repute thus stifling any work which is contrary to their view. The purpose of the journals, in regard to the diagnosis and treatment of hypothyroidism, is to perpetuate medical acceptance of financially profitable beliefs and to censor dissenting views that might threaten financial markets nourished by those beliefs. This has resulted in control of what is published and what is rejected by a group of scientists and doctors who are preventing important evidence in diagnosis and treatment of hypothyroidism from being debated in mainstream medicine. A difference of medical opinion has turned into a territorial war at the expense of the patients.

But if new guidelines are the only way to promote change in this travesty of a profession then please ensure the inability to convert T4 to T3 in the tissues, peripheral resistance to TH (which is in epidemic proportions), euthyroid hypometabolism, T3 deficiency and absorption problems are also covered. It is extremely important to add that even when TH serum levels and receptors are optimal, vitamins, trace elements, minerals or amino acids necessary for enzyme production or function could be deficient, thereby reducing the efficacy of metabolic reactions under control of THs. This includes peripheral metabolism, reception and mitochondrial energy production. This is the part of the greater thyroid system that mainstream endocrinology refuses to acknowledge.[18]

Chronic stress related hormone deficiencies are grossly under diagnosed and undertreated and this must not be ignored.

It is imperative that thyroid treatment is managed by how the patient feels first and foremost. The ultimate test of whether a patient is experiencing the effects of too much or too little TH is not the measurement of hormone concentration in the blood, but the effect of THs on the peripheral tissues. This cannot be measured by the TSH. The TSH should be abandoned!

The Urine Thyroid Hormones T4/T3 Iodine test is a more sensitive indicator for detecting tissue hypothyroidism and iodine deficiency, and older methods of testing such as body temperature and the Achilles heel reflex should be reinstated. Signs and symptoms must take precedence over any biochemical testing.

Furthermore, there should be no such thing as subclinical hypothyroidism in the new Scottish guidelines for hypothyroidism; you either have hypothyroidism, or you dont. The definition of Subclinical is no signs or symptoms, or that symptoms are mild. When I was finally diagnosed hypothyroid by my first endocrinologist, he wrote that my blood test was in keeping with subclinical hypothyroidism with a TSH around 6.My hair was falling out in chunks, I couldnt eat – my throat and tongue were swollen, my speech was slurred, my voice was hoarse, I couldnt think, stay awake, my muscles were so weak I could barely walk or lift my arms, I was going in and out of consciousness and the list goes on… and eventually suffered a stroke. I had over 60 symptoms and was still diagnosed ‘subclinical by the medical profession. The symptoms started very slowly one at a time and gradually got worse and instead of recognising these symptoms as hypothyroidism, my GP adamantly proclaimed they werent. I should have been diagnosed right at the beginning when I was complaining that my hair was falling out, my skin was dry, I couldnt stay awake and I was putting on weight that no amount of exercise would shift.

Subclinical in hypothyroidism is determined by the TSH which measures the amount of TH in the pituitary gland and NOT how much TH is in the peripheral tissues. My fT3 was low, and hit rock bottom when I was put on T4, and yet my fT3 was never used to diagnose or guide treatment. Even now, when on 280mcg T3 only, my fT3 is ignored despite it being the only biochemical diagnostic test worth anything when on any T3 therapy. My TSH and fT4 will be suppressed because Im on T3 – not T4. Put simply, the pituitary recognises that there is sufficient of the active TH T3 and so has no reason to tell the thyroid gland to produce more. So, measuring TSH and fT4 when on any form of T3 is useless and unproductive.

Everything to date failed including petitions and solicitations to various Members of Parliament in the UK, including my own MP, Bob Neill, the Royal College of Physicians, British Thyroid Foundation, British Thyroid Association, Society for Endocrinologist, Society of Clinical Biochemists, each and every endocrinologist and a plethora of letters to the General Medical Council who do not wish to embrace this matter.

You are our only hope right now. You hold the future and lives of hundreds of thousands of thyroid patients in the UK (and millions worldwide) in your hands. I hope that the petitions committee will take heed from my letter that the plight of thyroid patients is very real and a truly desperate one and that you will urgently consider heading your own inquiry to address this parlous situation. You cannot allow thousands of patients in Scotland to be abandoned to poor quality existence or suicide because of inexplicable obduracy among the endocrine profession and the medical establishment.

If the Scottish Parliament can initiate change in the diagnosis and treatment of thyroid disease in Scotland thus highlighting the global magnitude of this crisis affecting women, it may encourage other countries to carry out their own investigations into this terrible scandal and ultimately save millions of lives.

Yours sincerely

Jacqueline Falkowski

References:

    1. http://www.thyroidscience.com/Criticism/lowe.dec.2006/lowe.critique.T4.T4.T3.studies.pdf

 

    1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC185993/pdf/jcinvest00018-0293.pdf

 

    1. http://onlinelibrary.wiley.com/doi/10.1111/j.1742-1241.2009.02317.x/abstract

 

    1. http://www.tpauk.com/forum/resources/too-close-for-comfort.2250/

 

    1. http://www.medscape.com/viewarticle/524955

 

    1. http://online.liebertpub.com/doi/pdf/10.1089/thy.2014.0028

 

    1. http://www.karger.com/Article/Pdf/339444

 

    1. http://www.british-thyroid-associat…ocs/TFT_guideline_final_version_July_2006.pdf

 

    1. MEDIA=vimeo]97982033/MEDI

 

    1. http://www.bmj.com/content/2/1652/449.pdf-extract.jpeg

 

    1. http://www.bmj.com/content/346/bmj.f3830

 

    1. http://www.scottish.parliament.uk/S4_PublicPetitionsCommittee/General Documents/PE1463_QQ_Thyroid_Patient_Advocacy_04.03.14.pdf

 

    1. http://www.independent.co.uk/news/bu…n-7906833.html

 

    1. http://searchjustice.usdoj.gov/searc…&oe=ISO-8859-1).

 

    1. http://online.liebertpub.com/doi/abs/10.1089/thy.2010.0175

 

    1. http://blogs.bmj.com/bmj/2014/01/31/richard-smith-medical-research-still-a-scandal/

 

    1. http://magnacarta800years.com/what-is-the-magna-carta/

 

    1. http://www.tpauk.com/forum/resources/greater-thyroid-system-table-ud.2080/

 

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Previous comments

This is so sad 😪

vita,

And still nothing is being done…

Snobbles,

A two year review by NICE to make a set of guidelines starts next week. TPA is a stakeholder and will be consulted, as will the other thyroid groups. Its not fast but we are working to try and make the guidelines sensible.
Amanda.

Galathea,

So very sad, still nothing being done. Jacqueline personally thought that no Guidelines should be in place and that doctors should learn to think for themselves. Maybe she was right and I really hope her death was not in vein. This letter should be sent to NICE, RCP,, CCGs, every endo in the country, new trainee doctors etc, if not already. Dont suppose they would even bother to read it though!

JaneCx

JaneC,

I’ve suffered 20 years with hypo hell. I have my own story like millions do. So I truly understand like many hypos will this woman’s sufferings and utter despair with this disease and the lack of care and attention and lack of knowledge from medical professionals. I’ve been at death’s door because of poor treatment from Gps and so called endocrinologists. I sacked them all with my last ill breath because I knew they were hopeless and were killing me. Then I began the long road to recovery alone. Never to trust any of the medical profession again with regards to my hypothyroidism treatment and health. I fear the incompetence and lack of education in hypothyroidism the medical profession lacks. I do not fear hypothyroidism itself. Ands it took Liothyronine T3 alone to recover my health. After every mono , combo or even NDT therapy. T3 ONLY saves my Life each and every single hour of the day. Everything this lady says is true. You all out there in the medical profession who have read her last words of truths and knowledge and personal sufferings do something. Because we are suffering and dying. DYING A SLOW BUT FINAL DEATH ON THE NHS.
RIP Jacqueline

Elizajo,