Valvojat: MahaTar, Sienestäjä2
WHY DO INFORMED THYROID PATIENTS HAVE NO USE FOR THE AMERICAN THYROID ASSOCIATION?? Check out what they just came out with:
"The task force concluded that levothyroxine should remain the standard of care for treating hypothyroidism, noting that no consistently strong evidence supports the superiority of alternative therapies."
i.e. THOSE OF YOU WHOSE LIVES CHANGED DRASTICALLY WHEN YOU MOVED FROM T4-ONLY TO NDT are NOT EVIDENCE. Give me a break.
"I posted a review at the ATA Facebook page
https://www.facebook.com/ThyroidAssociation?sk=reviews
- they will probably delete it, but here's what I wrote.
Very disappointed in the latest Hypothyroidism Guidelines. It's very questionable that the ATA attests to the lack of conflicts of interest in creating the Guidelines, and yet accepts money from three large levothyroxine manufacturers, and declares levothyroxine as the "standard of care."
Your Guidelines overlooked and marginalized the research regarding showing T3/natural desiccated thyroid (NDT) as superior or equivalent (EJE, JCEM), then says because there isn’t evidence that T3/NDT is superior, levothyroxine is superior, and is the “standard of care.” Illogical.
Your Guidelines also claim patients who suffer from continuing thyroid symptoms, but have TSH in reference range on levothyroxine, warrant referral for mental health evaluation. This is when innovative physicians already know that many patients benefit from tteh addition of T3, or switching to NDT. Failure to resolve symptoms on levothyroxine is not a mental health problem, it's a quality of care problem, and your Guidelines perpetuate it.
Your Guidelines claim that medical ethics prohibit prescribing drugs that are “inferior to the standard of care” and that patients “requesting inappropriate therapies” like these drugs do not have “full decision-making capacity” and should be protected by doctors. What is unethical is to ignore the treatments that can work for many patients, and the research that has shown it to work for some patients, in favor of the drug whose manufacturers financially support you.
Your Guidelines warn that doctors who prescribe T3/NDT could face legal consequences or loss of their medical licenses. This seems to be an especially self-serving effort to go after integrative physicians, namely, those whose prescribing policies differ from your sponsors.
Patients who are interested in more information on why the patient community considers these Guidelines controversial and even potentially bad for thyroid patients can read my article at the About(dot)com site, or see the Holtorfmed(dot)com blog for more information.
So, the petition meeting went better than expected! Elaine Smith and I were a little concerned that requesting guidelines of SIGN may be the end of the road, which wouldn't really be satisfactory although understandable given how busy the Petitions Committee are. However, they have decided to formally ask SIGN to look at new guidelines for the treatment of patients unwell on Levothyroxine and also in to the situation of non availability of NDT and T3. They will specifically ask that I am involved in the process as a stakeholder. They also want to ask the Health Minister to look in to the situation with T3 shortages which has cropped up yet again and to ask the Scottish Government how the Listening Exercise is coming along. They said they have every intention of continuing the work in to 'this very interesting and important petition'. Elaine Smith MSP spoke of the many issues still to be resolved and I am sure her words were pivotal in ensuring things go forward. Am deeply grateful to her, and the committee. Things like this take time to come to fruition but we are on the way to making change happen!!
Helle Hagenau
The Norwegian Thyroid Association feels the need to clarify a few misunderstandings and factual mistakes in the text about Norway.
The Association was established in 1990 and since 1st January 2015 the name is STOFO (Stoffskifteforbundet), until then we were NTF – Norsk Thyreoideaforbund. However, our aims remain unchanged; safeguarding the interests of people with a thyroid disorder by conducting informational and advisory activities, stimulating research, collaborating with health professionals and act as liaison with the authorities. As of 31st December 2014 we have 7,870 members.
Since the year 2000, STOFO has an updated website providing detailed and approved information about thyroid diseases and their treatments. Almost daily our Facebook page is updated with news about treatments, nutrition, health and other relevant news. Our quarterly magazine “Thyra” features articles about new research, nutrition, health politics etc. and is written by experts in their fields.
Further, we have local and national support groups who are willing and capable to answer the most common questions one may have. The Association and its branches organise training events, public meetings and social activities.
STOFO has access to a team of medical professionals to ensure the information we provide is reliable and based on evidence. They are all experts in the field of thyroid diseases and work to improve the standard of diagnosis, treatment and quality of life for thyroid patients.
We provide funds each year for research into thyroid disorders and for an award promoting knowledge and understanding about diseases related to the thyroid gland and to thyroid patients.
STOFO believes in equal treatment of patients regardless of their background, medication, status or any other condition.
For further information:
www.stoffskifte.org
www.facebook.com/norskthyreoideaforbund
post@stoffskifte.org
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