Wall Street Journal om grasrotaksjoner mot dårlig behandling av hypothyroide

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08-08-13, 09:07
Vigdis

Wall Street Journal om grasrotaksjoner mot dårlig behandling av hypothyroide

http://online.wsj.com/article/SB1000...652110970.html

Det er fint at de skriver om dette. Men de starter så galt, med teksten under bildet

Sitat:

Hashimoto’s disease, the most common cause of underactive thyroid, is easily treated with hormone replacement drugs.

Tenk om det var så enkelt!

Så snakker de om thyroid, og dessverre går Ridha Arem i den klassiske fella mange endokrinologer går i

Sitat:

Most doctors, says Dr. Arem, generally prescribe T4-only medications. But such medications may leave some patients with lingering symptoms such as fatigue and depression and, in some cases, low T3 levels.

Some patients go to alternative health professionals to get prescriptions for drugs such as desiccated thyroid extract (DTE) prepared from animal thyroid glands, which include a combination of T4 and T3.

The danger here, Dr. Arem says, is such patients could end up with an excessive amount of T3, resulting in symptoms of overactive thyroids, such as anxiety and a fast or irregular heart rate. He advocates a combination approach with amounts tailored to the individual.

Hvorfor forstår de ikke at de som omdanner rikelig av T4 til T3 vil ende opp på en lavere dose thyroid? Kroppen lager T3. T3 er det aktive hormonet kroppen trenger. Hvorfor er det T3 som kommer fra thyroid så mye farligere enn det kroppen lager? Blir det for mye, er det jo så enkelt: senk dosen! Dette argumentet har jeg sett så mange ganger, og det er så feil. Men grunnen er vel at de vil ha et målbart TSH. Da er karusellen igang med underdosering av oss som er dårlige omdannere.

Les kommentarfeltet, det er mye bra der, Sheila Turner skriver bra der, Janie Bowthorpe med flere

Sheila Turner skriver

Sitat:

I am Founder/Chair of Thyroid Patient Advocacy. We run an Internet Thyroid Support Forum with thousands of members desperately seeking help and support their doctors are not giving them. WHY?

Endocrinology (in the UK) and patients alike are being failed by the Royal College of Physicians (RCP) because of their refusal to accept simple facts that have been known about for half a century. Studies show that around 15% of patients suffer chronically on the conventional treatment using levothyroxine (T4) monotherapy. Over 300,000 citizens in the UK, millions worldwide, are NOT suffering with ‘hypothyroidism’ (e.g. deficient secretion of hormone by the thyroid gland) that can be successfully treated with T4-only. These citizens have normal thyroid hormone secretion but the thyroid hormone isn’t getting into the cells, where it does its work. These citizens are suffering with ‘Euthyroid Hypometabolism’ (EH) which should be treated with the active thyroid hormone triiodothyronine (T3) and NOT T4.

Why does Endocrinology not know this? Why does Endocrinology ignore the ‘greater’ thyroid system that includes peripheral metabolism, reception and mitochondrial energy production? Why is Endocrinology?...

• Ignoring studies on the characteristics of peripheral metabolism,
• ignoring warnings of the failure of T4 monotherapy,
• ignoring studies showing treatment with T4-only to be ineffective.
• Ignoring the fact that of those treated with T4-only, many remain ill.
• Ignoring the greater activity of T3 over T4.
• Ignoring the potential for EH showing that a person can have the symptoms of hypothyroidism with normal thyroid function and that intracellular chemistry depends upon T3, not T4.
• Ignoring the physiology that connects the thyroid gland to the peripheral, symptom-producing cells.
• Ignoring Differential Diagnostic Protocol, which requires testing of all potential physical causes.
• Ignoring patient counterexamples to T4-only therapy whose symptoms were mitigated, or remitted, after treatment with T3.
• Ignoring the imprecise language that has contributed to false conclusions and unacceptable standards of care.
• Ignoring the evidence suppression condoned and encouraged by evidence-based medicine (EBM).
• Ignoring the fallacy of applying average solutions to every patient, including those with chronic symptoms of hypothyroidism.
• Ignoring the errors perpetrated by various anti-T3 studies and meta-analysis, circa 2000-2006.
• Ignoring, by the RCP and GMC, physiology other than that of the thyroid gland, which includes failure of peripheral utilisation. The GMC Endocrine curriculum doesn’t include teaching and testing of trainee’s competence in recognising the full array of manifestations of thyroid system failure (skills and behaviour of intracellular chemistry). Trainees do not understand the physiology and biochemistry of thyroid hormones, and are not competent to diagnose, manage and provide care for all patients with thyroid related disease until this has been rectified.
• Ignoring rebuttals submitted to RCP policy statement. TPA submitted a rebuttal 2010. The RCP response was “the College cannot enter into any further correspondence on this issue”. 2 further rebuttals were sent. The RCP responded with “The RCP position has not changed”.

Drug sales are underpinning the current approach to thyroid disease, Untreated or under-treated patients chronically use more prescription drugs, e.g. diabetes, cardiovascular disease, elevated cholesterol, gastrointestinal conditions, depression, anxiety, memory loss and more. Research has shown improvement can be achieved with the correct thyroid hormone replacement. and this has important implications for controlling the cost of healthcare.

Sheila Turner skriver videre

Sitat:

A little story - this makes me want to cry. Doctors DO come and read the information on my web site, and doctors ARE members of our support forum, I know, because some of them write and tell me so. One wrote that he had joined because he wanted to hear first hand what patients were going through. So, all of you who have a thyroid web site or Internet Thyroid Support Forum, keep up the good work, and let them know how badly they are treating their patients, even causing them great harm in a lot of cases.

I have had several phone calls from doctors (they get my no. from our web site contact details) telling me that they too are sufferers of hypothyroid symptoms and prescribed levothyroxine-only, yet they continue to suffer symptoms. They ask me where they can purchase Natural Thyroid Extract from a reputable Internet pharmacy. I tell them, and also give them recommendations on how best to treat using it. Don't believe that ALL doctors are on the side of the BTA/NHS - they most definitely are NOT. They are too afraid though of being seen to be going against mainstream guidance, because they have been threatened with the GMC should the do so. This is why there will not be changes in the diagnosis and treatment - until we bring this to the attention of the Law Courts. Only then will they start to listen.
08-08-13, 10:20
Anisa

Sv: Wall Street Journal om grasrotaksjoner mot dårlig behandling av hypothyroide

Sitat:

Opprinnelig skrevet av Vigdis

http://online.wsj.com/article/SB1000...652110970.html

Les kommentarfeltet, det er mye bra der..

Et sted i kommentarerne henvises til artiklen Why are our hypothyroid patients unhappy?. Den er oversat til norsk af Elbeth og kan læses her. xx9
08-08-13, 11:32
Vigdis

Sv: Wall Street Journal om grasrotaksjoner mot dårlig behandling av hypothyroide

En av de andre som skriver i kommentarfeltet, sier

Sitat:

Here are just a few articles for Dr Garber and his ill informed colleagues to read:

Reducing the Scope of Guidelines and Policy Statements in Hypothyroidism
JOM Volume 28, Number 2, 2013 Eric K. Pritchard, MSc
http://tpauk.com/images/docs/reduce-scope-final.pdf

Why we can’t trust clinical guidelines
(Published 14 June 2013) Cite this as: BMJ 2013;346:f3830
http://www.bmj.com/content/346/bmj.f3830?tab=responses

Thyroid function tests and hypothyroidism
(Published 8 February 2003) Cite this as: BMJ 2003;326:295
http://www.bmj.com/content/326/7384/295

An excerpt from the above paper says it all about the accuracy of the TSH:

Measurement of serum TSH alone may not always reflect thyroid status
Anthony D Toft (anthony.toft@luht.scot.nhs.uk), consultant physician, Geoffrey J Beckett, reader Author Affiliations

Paper p 311

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. Symptoms of thyroid failure are often non-specific, such as weight gain, low mood, and fatigue. Some patients seeking an explanation for feeling “below par” are disappointed when thyroid function tests are normal. Unable to accept that there may be psychosocial reasons for their symptoms, a vociferous minority believe that hypothyroidism may exist with normal serum concentrations of both thyroxine (T4) and thyroid stimulating hormone (TSH).

Their hypothesis is that a doctor cannot know whether a concentration of free T4 or TSH within wide reference ranges is normal for that individual. Such an argument, supported by some misguided medical practitioners to justify prescribing various combinations of thyroid hormones, does not appreciate the sensitivity of the pituitary thyrotroph, which modifies the synthesis and secretion of TSH in response to minor changes in thyroid hormone concentrations within their reference ranges. For example, a reduction in free T4 from 20 pmol/l to 15 pmol/l is likely to cause …

En annen skriver

Sitat:

Dr. Garber's approach to the medical diagnosis and treatment of Hashimoto's Disease would be laughable, were it not so implicated for the ongoing and extended poor health of millions of patients. I would wager from my mother's health and appearance that she is about to die within the next three years, and based upon her complaints and appearance I know, as a thyroid patient being successfully treated, that it is all ultimately due to her completely ineffective thyroid treatment (except that it is effective enough to keep her from descending into a myxedema coma, and that's about it).

She is a willing partner in this health descent because she trusts her clueless physicians, and will not entertain the idea that they don't know best. She has "Dr. Garber clones" for thyroid doctors and is suffering the consequences of both their willful blind ignorance, and of her poorly-placed trust. It is heart-breaking to see when all she needs is a physician competent in the use of NDT and the proper tests (NOT the TSH-garbage test).

I know, because I experienced a similar, frightening health descent. But I researched, fired my willfully blind, ignorant physicians, and found one who is competent to test and treat my Hashi's appropriately. All I can do is empathize with her fears and sufferings because she will not listen and believe her doctors could be misled.

I mainly fault the physicians who do not continue to educate themselves past medical school except through drug reps. Where is the inquisitiveness? Where is the desire to improve oneself as a clinician, to invest the TIME it takes to study and learn, instead of relying upon stock training from makers of synthetic drugs which prop up medical schools through their corporate donations? Physicians cannot see through this? Do they realize how donors influence their curricular content? When they hear from their medical school the lie perpetuated by donor companies that NDT is not to be trusted for consistency of dose from batch-to-batch, why do they "buy" this lie, lock, stock, and barrel, even though conducting their own quick inquiry would help them discover that NDT is completely standardized?

If physicians' goal is really to heal people and not to harm them, they MUST do better than this. The state of thyroid treatment and diagnosis is pathetic, sorry, inexcusable, and shameful. My thyroid doctor says I should become a thyroid doctor because (in her words) I know more than many thyroid doctors. Well, this should not be! What a shameful state, that thyroid patients could know more than many thyroid doctors! How did we get here? The reasons are too numerous to mention. Meantime, people are dying and disabled because of it. What a joke, except that it's NOT FUNNY. My mother is going to die soon, and she doesn't need to! This is appalling. Doctors are very intelligent, and could be using the brilliant minds and talents God gave them to be doing much better things for thyroid patients, if only they would dig a bit more deeply to acquire the learning that is out there and exquisitely easy to find.

Hvem er Dr. Garber?

Sitat:

....Many of his mainstream medical counterparts disagree. "The vast majority of people are fine on the standard therapy," says Jeffrey Garber, an associate professor of medicine at Harvard Medical Center and chair of the American Association of Clinical Endocrinologists Thyroid Scientific Committee. Still, he says, "there's a whole group out there who just thinks we're clueless."

Dr. Garber, one of the authors who updated the clinical-practice guidelines for hypothyroidism last year, says while there have been some intriguing studies looking at different therapies, more research is needed.

Sitat:

Dr. Garber, like many endocrinologists, uses T4 medications with the vast majority of his patients. Occasionally he'll also use conservative doses of a synthetic T3 drug, but he virtually never prescribes the animal-derived form, he says, because of complications that could arise for women trying to get pregnant or in early pregnancy, as well as individuals with heart disease.

Hvordan gikk det for alle kvinnene som brukte thyroid tidligere mon tro, i den tiden hvor man brukte kun thyroid? De fikk vel problemer med å bli gravide, og beholde barnet? Denne legen kjenner tydeligvis ikke til all forskning gjort på thyroid. Synd at leger får mulighet til å spre slike løgner