New Zealand thyroid patients’ petition milestones achieved

Since 2015, Thyroid Association of NZ (TANZi) has tried to engage endocrinologists and chemical pathologists who write NZ guidelines, lab testing policies and medical training so that issues for patients can be resolved. 

In 2018, TANZi told a local Member of Parliament that no-one would talk to them, and they were advised to petition parliament. See the petition online: “Help NZ Thyroid Patients Get Treatment That Works.” This petition ran for a year.

This is how the TANZi website described the situation in New Zealand:

“It is difficult for patients with symptoms of hypothyroidism and hyperthyroidism to find a NZ doctor or endocrinologist with the right knowledge to help them.

Those NZ doctors who are successfully diagnosing and treating thyroid disease need greater support; and the other doctors and endocrinologists need further education. …

TANZi asks parliament to launch an independent unbiased inquiry into the diagnosis and treatment of thyroid disease with specific recommendations including:

• greater access to the thyroid hormone tests e.g. FT4, FT3, reverse T3, thyroid antibodies 

• funding for medications containing T3, 

• promotion of positive open dialogue between doctors and patients, and

• the right education and training for NZ endocrinologists and doctors.  

TANZi asks that the inquiry start with a restorative justice process between the NZ Medical Council, Royal College of Physicians and patients who have been harmed by the guidelines and practice maintained by these organisations. TANZi believes that until these organizations acknowledge and accept that what they are doing with patients is causing harm, they will continue to harm patients and won’t question the evidence they cite.

A restorative justice process helped these agencies acknowledge and accept that NZ patients were being harmed by surgical mesh. TANZi believe this same process will provide the impetus needed for systemic change.”

(Thyroid Association of New Zealand website)

TANZi delivered their petition to parliament in March 2020. In April 2020, the Health Select Committee invited TANZi, led by the fearless Belinda Hodson, to present a written submission followed by an oral submission in May 2021.

This post includes a video of the patients’ presentation to their government’s committee, a transcript of the video, and the committee’s response to the petition.

The post concludes with a brief commentary on thyroid patient advocacy by the president of Thyroid Patients Canada.

Background links     

• TANZ petition lodged with the NZ Parliament (March 2020) 
• Written submission posted on TANZis website Home Page (April 2020) 

Video of the petition presentation

• Watch Belinda and her team address the Health Select Committee (May 2021):
  • On Facebook: click here and start the video at 1hr, 7mins ( 5 May 2021)

Official transcript of the presentation

See the “References” section at the end of the article for a list of scientific sources cited in the petition, and other relevant sources.

The response from the Health Select Committee

In August 2021, TANZi received a final report from the Health Select Committee, who agreed with their concerns:

“We encourage the Ministry of Health to facilitate discussions between the Thyroid Association of New Zealand and the Royal Australasian College of Physicians about the diagnosis and treatment of thyroid disease with a view to ensuring that:

• guidelines and position statements on thyroid function testing and the management of thyroid disease are kept up to date and aligned with international best practice

• the lived experience of those with thyroid disease is respected and taken into account in clinical decision-making processes

• ongoing professional development is available so that health practitioners are aware of the current best practice in this area.”     

(Health Select Committee, August 2021)

• Report of the Health Committee – Petition of Belinda Hodson for the Thyroid Association of New Zealand: Help thyroid patients get treatment that works, August 2021: https://www.parliament.nz/resource/en-NZ/SCR_115667/87f414302c248547cf8c5e4e85b7446fa4c2c9fe

“This represents a significant step forward for TANZi.

TANZi would like to thank Thyroid Patients Canada for their role in helping TANZi achieve this milestone, which has been significant :)” 

(Belinda Hodson, TANZi)

Comments by Thyroid Patients Canada

• By Tania S. Smith, PhD, TPC President, thyroid patient, and thyroid science analyst.

The New Zealand patients’ petition is similar in some ways to the petition that Thyroid Patients Canada submitted to the Canadian Federal Government in December 2018, which MP Diane Finley presented in parliament in early 2019. 

Like patients in New Zealand, thyroid patients in many countries are also working toward the same goals: 

• to stop the culture of blaming patients and other illnesses for symptoms and health problems on standard hypo- and hyperthyroid treatments; and 
• to allow for flexible, individualized and optimized thyroid therapy on the basis of scientific evidence and individual clinical evidence of health outcomes.

Why we need public thyroid patient advocacy

Today, collective public action by thyroid patients is necessary.

Public thyroid patient advocacy points out the unethical and unscientific bases of two major prejudices at the root of most treatment mistakes and failures:

1. Thyroid biochemical prejudice. For example:

• TSH-centrism: Misjudging someone as “euthyroid” and properly dosed just because their TSH is in normal range during therapy.

This prejudice reveals scientific ignorance of the very abnormal TSH-FT3 relationships that obtain in treated, thyroid-disabled populations when their TSH is normalized. Some individuals called “poor converters” have very low FT3 levels and FT3:FT4 ratios while TSH is within range on LT4 therapy. In addition, many patients who dose LT3 lose peripheral FT3 at a faster rate, especially during its post-dose FT3 peak.

2. Thyroid pharmaceutical prejudice. For example:

• Ignorance of LT3’s history: Imagining that clinical trials of LT4-LT3 combination dosing since 1995 constitute the only scientific literature available to assess the safety and effectiveness of LT3 at any or all dose ratios.

Ever since LT3 became a pharmaceutical in 1952, publications have reported safe and effective synthetic combinations and monotherapy. LT3’s clinical record is almost as long as levothyroxine’s record, since LT4 became a pharmaceutical only three years earlier, in 1949.

Historical ignorance contributes not only unscientific anti-T3 attitudes, but to clinical mistakes with dosing. Any thyroid medication, even LT4, can be overdosed or underdosed if clinicians are unaware of its unique characteristics that make dosing very different from TSH-driven thyroid gland secretion. Early scientists knew that lab results could be abnormal in response to euthyroid, healthy levels of T3 dosing, but biochemical prejudice didn’t contribute to pharmaceutical prejudice until the late 1970s.

These are two very difficult prejudices to break down. I’ve just revealed the tip of the iceberg.

Thyroid patients must engage in advocacy.

This is because too many physicians and policymakers can’t fight against prejudices that have been deeply ingrained. 

Few medical system insiders can afford to attack the medical system’s dogma and policies without suffering dire consequences to their professional careers and reputations.

• Can you imagine a doctor, someone whose bills are paid by their health care system, publicly fighting the systems put in place by their employers who can reprimand them for not following them?
• Do physicians have the power to speak out against FT3 laboratory test cancellation policies, TSH-centric therapy guidelines, poorly designed clinical trials, anti-T3 anti-desiccated thyroid attitudes, and inadequate medical education about how to adapt thyroid therapy to the individual patient? 

Even if some doctors understand how medical institutional practices support unethical and unscientific prejudices, they can’t take up our cause without great risk to themselves, and indirectly, great risk to us and future patients. If they fall in their battle on our behalf, we may lose some of our best thyroid doctors.

Perhaps some physicians may take up our cause after they retire or change careers, especially if we inspire them today. But they won’t be likely to bite the hand that currently feeds them, nor scold the schools that recently taught them and awarded their degrees.

The diversity of thyroid patient advocacy

Patients can use many methods to break down unethical and unscientific prejudices and communicate better approaches to thyroid therapy. For example:

• Some of us with voices full of freshly experienced suffering will fight with our first-hand testimony of our bodily response to thyroid treatment that did not work, compared to thyroid treatment that finally did work.
• Others with institutional and political intelligence will gather the evidence of our disorder’s neglect and the dysfunctional interactions patients have had with the thyroid health care system and policymakers.
• Others with rhetorical and scientific intelligence will fight with logical and eloquent arguments based on the most authoritative data from scientific publications. 

Together, from many angles, we can make citizens, physicians and governments aware of common thyroid therapy barriers that are not just harming patients’ health, but also costing medical systems and local economies a lot of money. 

The future of thyroid patient advocacy

Resources for advocacy are essential.

• Talented, educated, energetic, therapy-optimized individuals are needed. We can’t take action if we’re debilitated by brain fog and fatigue, or if we lack a stable income or healthy family relationships because of the medical shortcomings we want to fight against. We can rarely do it well alone as isolated individuals.
• Patient groups need to build nonprofit organizations. We need the human resources to do more than one individual or a small group can do. We need patients who mentor and educate future patient leaders. Future leaders and board members are needed to carry the torch after former leaders step down.
• We also need funding from no-strings-attached donations. That’s because we need to avoid formal alliances with medical associations and pharmaceutical companies that could compromise our independent voices.  

It will take many years and many messages from various types of public thyroid patient advocates to open minds among scientists, physicians, endocrinologists, and policymakers. 

Fortunately,

• Good-quality thyroid science is on our side today. Several groups of scientists have published key articles supporting some of our main arguments, and we cite them often. 
• Scientific history is also on our side, since a lot of scientific studies and reviews supported a patient-centered approach before narrow and rigid medical prejudices took hold in the 1970s and 1980s.
• Some government leaders and committees show they are willing to listen and willing to give our voices a public platform, although they are rarely capable of enacting meaningful change. It depends on the system.
• We have each other and our good thyroid doctors to support, encourage and renew us behind the scenes when we face disappointments and setbacks. 

All we can do as patients is keep trying to open medical minds, and the minds of government bodies and health care system administrators, while protecting our vulnerable and suffering colleagues.

We must keep up the good fight for the sake of this generation of thyroid patients and for the generations to come. 

On behalf of all thyroid patients in Canada and all our international members in our groups, I say:

“Thank you, Belinda and the Thyroid Patients Association of New Zealand, for all your hard work on the front line of the battle, defending effective thyroid therapy in your country.”

References

Selected works cited in TANZi’s submission

• Midgley, J. E. M., Toft, A. D., Larisch, R., Dietrich, J. W., & Hoermann, R. (2019). Time for a reassessment of the treatment of hypothyroidism. BMC Endocrine Disorders, 19(1), 37. https://doi.org/10.1186/s12902-019-0365-4
  
• Jonklaas, J., Bianco, A. C., Cappola, A. R., Celi, F. S., Fliers, E., Heuer, H., McAninch, E. A., Moeller, L. C., Nygaard, B., Sawka, A. M., Watt, T., & Dayan, C. M. (2021). Evidence-Based Use of Levothyroxine/Liothyronine Combinations in Treating Hypothyroidism: A Consensus Document. Thyroid: Official Journal of the American Thyroid Association, 31(2), 156–182. https://doi.org/10.1089/thy.2020.0720

Other relevant works by Anthony D. Toft

BIO: According to Wikipedia, From 1978 Dr. Toft was Consultant Physician at the Edinburgh Royal Infirmary. He served as President of the Royal College of Physicians of Edinburgh from 1991 to 1994, and “he was President of the British Thyroid Association from 1996 to 2009. 

• Toft, A. D. (2017). Thyroid hormone replacement – a counterblast to guidelines. Journal of the Royal College of Physicians of Edinburgh, 47(4), 307–309. http://www.rcpe.ac.uk/sites/default/files/jrcpe_47_4_toft.pdf
• Toft, A. D. (1985). Thyroxine replacement treatment: Clinical judgment or biochemical control? Br Med J (Clin Res Ed), 291(6490), 233–234. https://doi.org/10.1136/bmj.291.6490.233

Other References in this article

• (Health Select Committee, 2021). Report of the Health Committee – Petition of Belinda Hodson for the Thyroid Association of New Zealand: Help thyroid patients get treatment that works, August 2021. Retrieved on 3 September 2021 from: https://www.parliament.nz/resource/en-NZ/SCR_115667/87f414302c248547cf8c5e4e85b7446fa4c2c9fe