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UK’s Royal College of Physicians continues to be deaf, blind and royally dumb.

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Funny how things work. I had been wondering what the heck was going on with thyroid patients in the UK after the Royal College of Physicians (RCP) came out with their February 6th guideline stating that 1) thyroxine was the only medication needed for hypothyroidism, 2) “natural” medications were dangerous and 3) the only labs needed are the TSH and T4.

All the above goes totally against the life-changing experience of a growing body of patients.

Equally a part of this B-grade horror movie is the stand taken by the British Thyroid Association (BTA).  Read it. And UK-TPA thyroid patient advocate Sheila Turner began to go through her own hell when her Armour was taken away, which you can read about in the February 20th blog post here.

And suddenly, I get an email from Sheila, informing me that the RCP stand is as bad as it was three months ago for her and other thyroid patients.

Sheila states: This is absolutely unbelievable that out of the hundreds of references we sent to the Royal College of Physicians to show their guideline to be flawed, they have taken no account of one single one of them. They are publishing their previous guidance without one since change. The world has gone mad.

Dear Sheila, Further to my email of 6 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, Catharine Perry 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. 2004;291:228-238.

And as your peruse the six references above which they use to defend their tunnel-visioned, moronic position, you realize that you, your words, and your positive-outcome experience on desiccated thyroid, as well as the use of far better labs, is about as important within the UK’s latest medical pronouncement as is dirt on the bottom of a rusted bucket in the middle of an empty field in nowhere. Yup.

Or as Harold Shipman stated about the RCP’s guidelines: What a brilliant wheeze.

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See below on the potential importance of potassium in your health and well-being. And on the May 7th post about the party being over with Forest Pharmaceuticals, comments continue to come in about experiences with the “new” Armour.

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The “Three Stooges of Belief” of the British Thyroid Association (let’s hope this stupidity doesn’t rub off in the US!)

The British Medical Journal (BMJ) recently came out with yet another thyroid article, benignly titled Diagnosis and treatment of primary hypothyroidism and authored by the British Thyroid Association (BTA),  that at first blush, looks so caring.

Namely, they express deep concern that that since hypothyroid symptoms can mimic other conditions, patients may be getting an incorrect diagnosis which could expose some patients to the harmful effects of excess thyroid hormones, while other serious conditions may go undiagnosed.

And they add: In other patients, adequate replacement with levothyroxine does not resolve symptoms, which are attributed to hypothyroidism rather than other conditions that may coexist, such as depression.

The article continues with:  Normalisation of thyroid stimulating hormone means a return to normal health in most patients with primary hypothyroidism.

In other words, what you have above are the Three Stooges of the stated beliefs of the British Thyroid Association.

Stooge stated-belief #1: “Incorrect diagnosis allow other conditions go undiagnosed” What is inferred is that there are a host of diagnoses of hypothyroidism that are incorrect. Why? Because a wise physician dared to listen to clear symptoms of hypothyroidism or use the free T3, in spite of a so-called “normal” TSH–a lab test which measures a pituitary hormone, not the cells ability to receive enough thyroid hormones.

Stooge stated-belief #2: “If adequate doses of levothyroxine do not resolve symptoms, those symptoms are due to something else.” That is akin to saying if eating 100 calories a day results in malnutrition and starvation, your malnutrition and starvation is due to something else. And one particular symptom they are referring to is depression–a classic symptom of undiagnosed and undertreated hypothyroidism in MILLIONS of individuals around the world.  And isn’t it just odd how that depression resolves itself when the patient is put on Armour and allowed to dose by the elimination of symptoms.

Stooge stated-belief #3: “A normal TSH lab result equals normal health in those treated for hypothyroidism”. Gee, funny how millions of thyroid patients around the world have had a so-called “normal” TSH lab result along with a diverse blend of continuing and CLEAR hypothyroid symptoms.  Additionally, we have a large and growing body of patients who, when they switched to Armour desiccated thyroid or other fine desiccated thyroid prescription meds,  had those symptoms resolved when they were dosed according to the free T3, improved blood pressure, strong heart beat, lowered cholesterol, and complete elimination of symptoms. Patients have learned what works!

When you understand the British Thyroid Association’s hell-bent and rigid stands against Armour desiccated thyroid, their promotion of one of the worst labs ever created to diagnose and dose by, their love affair with the most inadequate thyroid medication ever thrust onto the market by money-grubbing pharmaceuticals (levothyroxine), and their complete failure to listen to patients and recognize continuing symptoms of hypothyroidism while on synthetic T4, you come to realize how meaningful any article on hypothyroidism will be by the British Thyroid Association.

P.S.  Do ya wonder if the British Broadcasting Corporation (BBC) has the smarts to report the other side of the story??

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Thyroid Tidbit: Sock it to ’em, Dr. Lowe!!

Right on the heels of the insane recommendation by the UK’s Royal College of Physicians and the British Thyroid Association (that thyroxine be the ONLY treatment for hypothyroidism–see Feb. 14th below) came an EXCELLENT and THOROUGH rebuttal by Dr. John C. Lowe titled Stability, Effectiveness, and Safety of Desiccated Thyroid vs Levothyroxine: A Rebuttal to the British Thyroid Association. WAY TO GO, John!!

p.s. Also see Sheila’s experience on the Feb. 20th post. Awful

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The UK is now taking Armour away from patients!!

 

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(This post was written in 2009, but underscores how tough it can in the United Kingdom to be a thyroid patient even today! Patients still manage to get NDT on their own.)

And right on the heels of my last post, I want to inform everyone of a REAL LIFE HORROR STORY that is happening to Sheila Turner of the UK right now. Sheila is a thyroid patient advocate who created the UK Thyroid Patient Advocacy website.

Sheila will tell anyone who asks that she was very ill while taking levothyroxine (125 mcgs) only therapy, being wracked with back pain so severe she was unable to get out of her armchair, bed or car after sitting/laying down for a while.  She also suffered from debilitating ‘brain fog’ and short term memory, along with the usual lingering hypothyroid symptoms while on thyroxine.

Sheila states: I couldn’t tolerate levothyroxine alone because it was found I was not converting this mainly inactive hormone to the active hormone T3.  As my muscles and tissues were not getting the T3 required, my muscles in my back were going into spasm, causing the severe pain.

She then saw a private hormone specialist who started her on natural thyroid extract (Armour Thyroid, USP) and she regained her full health! It was so profound that she started the TPA-UK in 2004 to campaign for a better diagnostic and treatment protocol within the National Health System (NHS). (UK has socialized medicine.)

Fast foward to 2009.  As I wrote about below in my Feb. 14th blog post,  the UK Royal College of Physicians along with several supporting organizations recently brought out their pathetic and narrrow-minded new guidelines on the diagnosing and treatment of primary hypothyroidism.  And lo and behold, Sheila, along with about 15 other patients on Armour via the same medical consultant,  have had their Armour removed.

Says Sheila:  He and every NHS endocrinologist has been sent a letter from the President of the Royal College of Physicians, telling them they should use thyroxine ONLY as a treatment for primary hypothyroidism and that they should not recommend or prescribe Armour Thyroid and that only accredited endocrinologists should ever recommend T3 as this was rarely indicated.

Sheila has been forced to return to the synthetic treatment of levothyroxine (100 mcgs) and to it has been added 20 mcg liothyronine (T3) split twice a day. But there’s no guarantee she will be able to stay on the T3. Additionally, don’t be fooled into thinking that a combo of synthetic T4 and synthetic T3 is as good as Armour. Patients all around the world who have tried it, then switched to Armour, report far better results with the latter.

Says Sheila in a completely shocked state:  I cannot believe this is happening – I tried to question him as to the reason all the NHS endocrinologists didn’t demand the BTA produce MEDICAL EVIDENCE to show that hypothyroid sufferers ONLY ever needed T4 – he said he knew they should have produced evidence, but it seems because it has come from the RCP, his and everybody else’s’ hands were tied – they have to be seen to be doing what they are told. I got the distinct impression that if anybody rocked the boat, they would be next doctor arraigned before the GMC.

Making this real life horror story even more shocking, her medical consultant explained that the only way to find the truth as to whether Armour was a better medication or not was through clinical trials using Armour versus levothyroxine.  (i.e. patient experience all over the world revealing it works isn’t enough evidence. Give me a break). But when she pressed him into starting this, he said they would need the backing of their thyroid association – yes, the British Thyroid Association (BTA), the very group that has said that a TSH of 10 is borderline hypo. (See my Nov. 7th post)

Sheila continues: I told him they would never agree to this, and he agreed also. I told him that we did NOT NEED the British Thyroid Association to get ethical approval – and surely he could get a group of like-minded practitioners around him and do this themselves – but it would cost a great deal of money – and, again, if you are a member of BTA (and I believe most endocrinologists are) then they daren’t do a thing without their approval.

At the moment, Sheila will tell you with sadness and shock that it all seems rather surreal at the moment. She is scared for every sufferer of this disease to be forced into taking only one thyroid hormone – a synthetic storage hormone. She is  scared for herself, too.

Sheila expounds: I just sincerely hope that I can cope with the change-over to synthetics and that Armour has made my body strong enough to do this. I will make absolutely sure that my adrenals can cope with this. I feel SO VERY sorry for all of those sufferers who are being left in the care of a head in the sand endoprat , who will refuse to even give them the correct thyroid hormone their body needs.  Once again – THE NHS IS KILLING US!

This is profoundly sickening and shocking.

Update: you can read Sheila’s and UK-TPA’s response here: //www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/

More from Sheila that gives UK patients hope: //www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/

From 2016: //www.stopthethyroidmadness.com/2016/04/18/dynamo-thyroid-patient-advocate/

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British Thyroid Association still thinks a TSH up to 10 is borderline NORMAL????

A thyroid patient from the UK, and a member of Thyroid UK, reminded me of the ongoing travesty in the UK concerning the TSH lab test. And I thought it was worth revisiting due to its extreme absurdity. Quoting from www.brf-thyroid under FAQ, then Hypothyroidism, then Treatment:

The most sensitive indicator of developing hypothyroidism is a rise in the TSH result. Generally a TSH result of <5 is regarded as biochemically ‘normal’, a result of 5-10 is borderline and a result of >10 (in a patient who is not acutely ill) is regarded as consistent with hypothyroidism. The biochemical results have to be considered along side clinical symptoms, and together they determine the point at which the physician will introduce Thyroxine therapy.

Yikes. 5-10 is only BORDERLINE hypo?? What planet to they live on?? I have come across MANY thyroid patients on internet groups who have had a TSH below 3 with RAGING hypothyroidism, and for YEARS being told they were normal. Never, ever has the TSH been a “sensitive” indicator until it finally rises enough to reveal it….but that can be YEARS in the making, and the patient is now living with adrenal fatigue to further complicate their ongoing hypothyroid condition. The TSH lab test does NOT work.

Then from http://www.british-thyroid-association.org/Guidelines/, and downloading the 2006 final version of the UK guidelines for the Use of Thyroid Function Tests , and reading 3.2.2, comes this:

The decision on treatment of patients with subclinical hypothyroidism should be guided by repeated TSH measurements. When TSH is elevated but <10 mU/L there is no consistent evidence of an association with symptoms, secondary biochemical abnormalities (hyperlipidaemia), cardiac dysfunction or cardiac events.

No consistent evidence of an association with symptoms?? Then what ARE those symptoms that thyroid patients have experienced over and over and over, even with a TSH as low as the 2’s??? And repeated TSH measurements?? There is a huge body of thyroid patients across the world who have had years of a NORMAL TSH yet raging hypothyroid symptoms.

They also add:
There is evidence of improvement in the lipid profile and symptoms when patients with modestly raised TSH (mean 11.7mU/L) were rendered euthyroid with thyroxine

Calling anyone “euthyroid” (normal thyroid-wise) on a T4 med, with an average TSH of 11, is so laughable that it stands on its humorous own.

The Dark Ages persist in the diagnosis and treatment of hypothyroidism. What a shameful, blind-sighted travesty! Are you from the UK and dealing with the backwardness? Talk to us by replying to this blog (and be patient–comments don’t always show up quickly.).

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