Other Initiatives That We Support
ThyroidChange has a lot of momentum thanks to your support. We need to keep advocating for better thyroid care while supporting each other. With persistence, we can create change. You may be interested in getting involved in one of these other causes listed below. The following initiatives are NOT affiliated with ThyroidChange, however, we support them.
World Register of Counterexamples and Triple Counterexamples to T4-only Therapy (http://tpauk.com/articles/3114-world-register-of-counterexamples-and-triple-counterexamples-to-t4-only-therapy) These short, but extremely important surveys are applicable to two patients groups; 1) The Counterexamples: those of you who continued to suffer symptoms on T4-only therapy, and who found those symptoms were mitigated or disappeared once you were started on a T3 hormone containing product. 2) The Triple Counterexamples: those of you who are suffering on T4-only treatment.
The Register of Counterexamples and Triple Counterexamples will be used to draw the attention of those responsible authorities throughout the world about the dire need for a re-examination of the existing protocol for the diagnosis and management of thyroid disease. The Register will also be used to challenge those studies previously undertaken that concluded that T4/T3 combination worked no better than T4-only.
World Thyroid Register (www.worldthyroidregister.com) Dr. Skinner started a World Thyroid Register which will consist of a list of completely confidential names. This has been formed to address the parlous situation of patients who are hypothyroid and have yet not been diagnosed and patients who are being managed with an unacceptably low level of thyroid replacement.
International Patient Petition (www.intlhormonesociety.org) International Thyroid Patient Organisation (ITPO) created a patients’ petition for better diagnosis and treatment choice for hypothyroid patients. UK, France, Germany, USA
ThyCa: Radioactive Iodine (RAI) Treatment-Related Survey (www.thyca.org/raisurvey) This is a brief survey (it should take 5-10 minutes) concerning an aftereffect of Radioactive Iodine (RAI) treatment.
Thyroid Patients Meet with Scottish Parliament: (www.thyroidchange.org/thyroid-patients-meet-with-scottish-parliament) Please watch and share this video! Scottish patients: Sandra Whyte, Marian Dyer and Lorraine Cleaver met with the Scottish Parliament on Tuesday, February 7, 2013 regarding their petition, “Effective Thyroid and Adrenal Testing, Diagnosis and Treatment”. Their stories are heart-breaking, the information is critical, and the need is dire! ThyroidChange was mentioned in the Parliament discussion as well, regarding patient movements for better care.
Effective Thyroid and Adrenal Testing, Diagnosis and Treatment Petition (www.scottish.parliament.uk/gettinginvolved/petitions/PE01400-PE01499/PE01463_BackgroundInfo.aspx) This petition is calling on the Scottish Parliament to urge the Scottish Government to take action to ensure GPs and endocrinologists are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment. This petition was discussed initially, in Parliament on Tuesday, February 5, 2013.
UK: 38 Degrees Thyroid Petition: Better Endocrinological Service and Treatment (B.E.S.T.) (http://you.38degrees.org.uk/petitions/better-endicrinological-service-and-treatment-for-thyroid-patients-b-e-s-t) This petition regarding change in the treatment of thyroid disease is addressed to Jeremy Hunt and is seeking the 100,000 signature mark set by the United Kingdom for a petition to be heard.
UK: Whistleblowing and Patient Safety (www.change.org/petitions/health-select-committee-set-up-an-inquiry-into-whistleblowing-in-the-national-health-service) The Department of Health is asked to consider the recommendations made in the research paper “Whistleblowing and Patient Safety” available here http://www.mediafire.com/?vb69kbj0a975uuu and published by the Journal of the Royal Society of Medicine, July 2011. The recommendations are as follows: “Our recommendations are firstly that the profession, through the GMC or BMA Council, should commission a Consultation Group on Reporting Poor Care. This Group will examine the consequences to all parties from incidents of reported poor care. Second, the Government should consider establishing a Health Select Committee Review of Whistleblowing that would make impartial recommendations to Government and the profession. Third, the Government should consider setting up and resourcing a National Whistleblowing Centre similar to that in the US. We believe that only by open public scrutiny will constructive change be cemented into exemplary clinical practice”
UK: Petition Against Fluoride (www.change.org/petitions/your-water-is-poisonous#) A petition against the fluoridation of water in Birmingham which states Fluoridation of public water supplies is an act of mass medication without consent.
UK: Fund research into T3 and/or NDT treatment for Hypothyroidism (http://epetitions.direct.gov.uk/petitions/19000) This e-petition is requesting the Department of Health fund research into T3 and/or natural desiccated thyroid treatment for hypothyroidism in the UK. E-petitions are an easy, personal way for you to influence government and Parliament in the UK. You can create an e-petition about anything that the government is responsible for and if it gets at least 100,000 signatures, it will be considered for debate in the House of Commons.
UK: Make funds available for trials and research for LDN to achieve a license and public availability (www.ipetitions.com/petition/ldnnow) www.ldnnow.com are petitioning the European Parliament to make funding available, either directly through taxes or indirectly by directing research bodies to provide funding, to undergo trials for the generic drug, Low Dose Naltrexone (LDN). Low-dose Naltrexone (LDN) has been used in the treatment of autoimmune diseases in the USA since 1985 with few initial side effects.
UK: Review Levothyroxine Generics (http://epetitions.direct.gov.uk/petitions/31248) (Closing Date: 13/03/2013) Following reports from prescribers and patients, the MHRA suspended the licence for Teva Levothyroxine 100 microgram tablets in February 2012 (see links below for more info). In the aftermath of this, Malcolm Cooper, who’s wife has hypothyroidism, set up a Government e-petition to the Department of Health. For more information about the problems with Teva levothyroxine100mcg tablets, see the MHRA press release for this: http://www.mhra.gov.uk/home/groups/comms-po/documents/news/con143689.pdf ; and the accompanying MHRA Teva Levothyroxine Questions and Answers document here: http://www.mhra.gov.uk/home/groups/comms-po/documents/news/con143690.pdf
These initiatives are not affiliated with ThyroidChange, however, we support them.