Support group principles

Even if the group is private, we have no control over what other users do with our information once it is shared.

Share only the stories and private medical data you feel comfortable sharing. If you don’t want your post, comment, or reply stored in the support forum, you must delete it yourself after the discussion thread is finished. 

Upon entry to our group, members pledge to uphold the trust and privacy of a private support group by not sharing others’ private information outside the forum without the author’s prior written consent.

No thyroid authority is infallible, even when the authority is

• a medical organization,
• a thyroid doctor,
• an author of thyroid books,
• or even Thyroid Patients Canada posts.

As a group, we can help each other scrutinize the content shared in links.

Principle #2 below, “seek evidence,” is something we can do both before and after a link is shared. All thyroid advice and information is subject to correction by science. Sometimes new research sheds light on a topic and the old information is now found to be incorrect. Let’s learn together.

Some sources share health myths, conspiracy theories or controversies that could put the group at risk.

Facebook can remove groups without notice.

This has already happened to other health groups in the past few years.

Even without the real threat of Facebook censorship, some discussion topics can also put our nonprofit association’s reputation at risk and cause divisiveness, anxiety and confusion in our online support community.

See our support group challenges page to understand which controversial health topics are risky and should not be posted in our group. On that page, we also discuss strategies and procedures to handle these potential risks.

Please, do not take it as a personal affront if peers or moderators critique or question the source you’ve shared.

You may defend the argument and content of your source, if you wish.

Ultimately, what they say must stand or fall on its own.

The more information you give, the more your peers can share wise and helpful responses.

It’s wise to introduce your story, data, or shared link with your comments or questions about it. 

Let us know:

Desired or hoped for actions / aims:

• What do you suggest we could do with this information?
• Is it just something to ponder, or is it urgent for us to take action?
• Are you asking for others’ feedback on the quality of its content?

Your commentary / analysis of what you share:

• What’s the thyroid topic or subtopic of the post (if not clear from what is shared)?
• Are there any important items, quotations or lists you’d like to highlight?
• If you’re educating us, what do you think is helpful or interesting about what you’re sharing?
• What is your current emotion or attitude about what you’re sharing?

The background behind what you share:

• What history or contextual details do we need to understand it?
• What specific kinds of patients, or types of challenges or situations, does it address?

We often can’t respond wisely without evidence.

Primary data means data that comes from the patient’s own body and our interpretation of our symptoms.

Some of this data comes from our stories about our own thyroid condition and its treatment.

Data may include

• lab test results (with reference ranges, please),
• vital signs like heart rate,
• thyroid medication type, doses and timing,
• anything relevant about your diet and nutritional supplements,
• concurrent health conditions,
• symptom narratives, and
• stories of our personal thyroid struggles and victories.

Oftentimes there’s not enough evidence in the original post to provide helpful comments or tips from peers. In such cases, it’s respectful to ask the original poster to edit their post or to add comments to supply more information so we’re able to give informed responses.

Scientific journal articles about thyroid disease and therapy are at the root of medical knowledge for patients, just as they ought to be for our doctors.

A vast storehouse of scientific knowledge is at your fingertips.

Most of these thyroid science articles can be found by keyword searching on online scientific research databases, such as:

• Pub Med Central: https://www.ncbi.nlm.nih.gov/pmc/ — An extremely large and “a free full-text archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM).”
• Science Direct https://www.sciencedirect.com/ — A more specific database for scientific, technical, and medical research.
• Oxford Academic Journals:  https://academic.oup.com/journals — Yet another portal that houses a lot of thyroid science.

Use “Advanced” search features that enable you to search for keywords in the Title and Abstract fields.

In PubMed, you can sort the result list by date (newest first) or relevance.

PubMed usually gives you links to similar articles and (more recent) articles that cite this article.

Many articles on PubMed have free fulltext links. Click the buttons found in the sidebar that take you to the PMC fulltext page or the journal’s fulltext page.

What do we do when we can’t read more than the title and abstract due to a paywall on an article?

• Ask thyroid patients who are students or staff at colleges and universities that grant them access to their academic library databases.
• Share full-text articles privately with an individual patient through individual messenger threads, which allow file attachments.
• Share tips about obtaining scientific articles online free of charge, such as getting them from the authors’ page on Academia.com or ResearchGate, or through sources we share privately.
• Share quotations and screenshots that feature only the important bits, citing where they came from.

Of course, even scientific publications are not perfect. They are never infallible or deliver absolute truth. Some may contain information that’s now been proven incorrect.

However, scientific publications can give us access to important data and analysis we can’t get any other way.

Can you do the following things?

• Test theories by experiments on rats to understand how things work at the molecular level.
• Examine T3-treated cells under microscopes.
• Organize systematic clinical or retrospective studies of 20 people or 1,000+ people.

We can’t do any of that ourselves as mere patients or even as mere doctors.

Each thyroid scientist is an expert in their narrow branch of thyroid science. We depend on critical readers and scientific reviewers to connect the dots between articles and build a web of understanding.

Sadly, many of our doctors have little time or interest in reading and thinking critically about original thyroid research publications and what they mean for diagnosis and thyroid therapy.

Most medical people will trust in consensus-based “guidelines” documents to synthesize and summarize the evidence second-hand.

They may also rely on second-hand summaries on HealthLine and Medscape or chapters from medical textbooks, which filter a selection of science through the lens of a group’s or individual’s opinions.

It’s unreasonable to imagine, wish or expect that all thyroid scientific knowledge ought to reside in medical professionals.

That is not going to happen, ever.

Why not?

• They simply don’t have the time. They learn “on the go.”
• Their profession usually involves WAY more than just thyroid.
• Thyroid science is complex. Thyroid hormones literally affect every single organ, tissue and cell in our bodies. Then there’s gland health, autoimmunity, and interactions with diet and other diseases. It is overwhelmingly diverse and broad as a field of study.

You know the saying “It takes a village to raise a child?” It means that parents are not enough, even if they are essential.

In the same way, doctors are not enough, even if they are essential.

Scientists have amassed a huge mountain of knowledge on thyroid that few people are willing to climb or dig into.

We can’t afford to be arrogant because WE didn’t make the knowledge, but there is a 99% chance that your doctor has not read the thyroid science articles you have and considered them in light of your symptoms and lab results.

It often takes not only a doctor, but a community of well-informed thyroid patients, to find just the right kind of scientific knowledge to enhance our thyroid health.

Have confidence in your lifelong learning ability.

Thyroid science is just another community with its own way of talking and reasoning.

Science does not belong only to doctors and scientists. It is our human inheritance.

Thyroid science is about OUR bodies. It is our right to read it, analyze it, and learn from it.

Any patient should feel encouraged to look for relevant thyroid science, link to journal articles, and even supply their own commentary on it.

Thyroid patients have diverse skill sets needed to understand science:

• Intelligence,
• Literacy skills (analytical reading, critical thinking),
• Time,
• Persistence and patience, and most of all,
• A keen interest in certain topics in thyroid science.

Nothing motivates research like an urgent question, and the burning need or desire to know something because it affects your health today!

No, you don’t need a special course or degree. Formal medical education can be comprehensive but shallow. The vast majority of medical students will only learn what they are told to learn because it’s on the exam. Most of them are not even going to question what they learn.

But YOU can focus your search for knowledge. Indeed, you must. You learn based on active inquiry and a real need to know. You can ask any questions you want, not just answer the questions asked by a teacher. There is no exam. Instead, you have a suffering body to take care of, and it’s the only body you have.

Think about all the people who have learned how to build houses themselves. Any art and craft is learned by experience as well as study. We learn something each time we search.

Even with thyroid “brain fog,” it takes more time, but we still learn.

Little by little, as we grasp and reason about the science we read, we can share its treasures with our peers.

By discussing the science in our peer support groups, we can make thyroid science concepts and vocabulary, like “deiodinase type 1,” more familiar to ourselves so that we use the correct medical vocabulary when we talk to our doctors.

So many times, we have our own personal agendas in mind, and they overwrite the agendas that our peers are suggesting to us.

The person’s original post ought to clarify whether they are seeking

• empathy and compassion,
• other patients’ anecdotes and narratives,
• careful analysis of lab data or symptoms, or
• self-advocacy advice when dealing with a challenge with the medical system. 

Try to avoid hijacking a post by starting an entirely separate conversation within the comment thread.

Discern when it’s time for someone to start their own separate post or take the conversation into a private messenger thread.

On the other hand, conversations naturally wander a little bit and get into the related stories and struggles of other patients. These comments and replies can be friendly and informative. Just try to come back to the original post’s general theme if you get off track. 

• How could the causes of this person’s thyroid condition influence their symptoms and their lab results? Is it autoimmune, central hypothyroidism, or a thyroidectomy due to thyroid cancer?
• Has their TSH, FT4, FT3 relationship been stable over time? What does their lab history reveal about trends when doses change?
• How strongly does this person’s mode of thyroid therapy (if they are on thyroid therapy at all) skew their biochemistry? For example, we know that in LT4 monotherapy, the FT3 will usually be significantly lower in reference than the FT4. Is their FT3:FT4 ratio lower than average for the population of patients treated with LT4 monotherapy?
• Is this person taking any other medications or supplements known to interfere with thyroid secretion or thyroid hormone metabolism or TSH response?
• How do the person’s other diseases potentially interact with their thyroid hormones and/or antibodies? In what ways do thyroid excess or deficiency make the symptoms and signs of other conditions worse?

If we understand how our reasoning works, we can improve it.

A well-known theory is Stephen Toumin’s model of practical reasoning, which helps us understand how we reason in everyday life.

I use synonyms to boil down his system to 3 components.

1. A Claim (or conclusion)
2. Evidence (or data or grounds) that may support the claim,
3. Analysis of evidence, which involves the use of premises or assumptions, and critical thinking about other data and other possible claims.

Here’s an example of a thyroid-related health claim about the use of selenium dosing to help people with Hashimoto’s thyroiditis.

1.    A claim or conclusion.

“You could take 200 mcg of selenium per day to reduce your TPO antibody levels.”

A claim is a very focused opinion or truth-statement or persuasive “should” statement that applies to a case, such as a specific patient’s concern or situation.

Claims can either be informative, as in “The science seems to say that…” or persuasive and advisory, as in “X is a good solution, or Y is unwise,” or “Therefore, you should/could…”

Often a claim comes first when we argue in everyday life. People often want to know what our opinion is, and then they want us to explain what it’s based on.

A claim is like the destination sign on a bus. If we know a bus is going to Calgary, and we’re intrigued by that destination, we will be more willing to get on.

Claims tell us where the arguer intends to go. Once we get on a bus to Calgary, we’ll have confidence that barring any obstacles along the way, we’re likely to arrive at the destination.

If a person is not yet ready to make a claim, they may merely raise a topic or ask a question, or they may express a hypothesis in tentative language, as I’ve used “could” in the quotation above.

In scientific research, a reasonable hypothesis comes first, and a firm claim/conclusion comes only after collecting and analyzing the data.

2.    Evidence or empirical data

“In 2017, Ventura and colleagues reviewed three scientific studies in which selenium at 200 mcg per day reduced TPO antibodies.”

Evidence should be of a type that is appropriate, and ideally sufficient, to support the claim.

These can be narratives, statistics, news, definitions, or informal or structured experiments, depending on what’s relevant to support a claim.

The more accurate and vivid the data, and the closer the source is to direct observation, the stronger the reasoning will be.

A large quantity of data or an authoritative source is not always necessary, and a study based on 1,000+ people could still be poorly designed.

The intrinsic quality and relevance of the data to the claim is always important.

3.    Analysis

Selenium is involved in the process of protecting the thyroid gland from damage that often occurs in persons with high TPOAb antibody levels.

• (Ventura explains that selenium is necessary to form glutathione peroxidase, a powerful antioxidant. Glutathione peroxidases in the thyroid protect thyroid tissue from fibrosis caused by the chemical reactions necessary to healthy thyroid function. Hashimoto’s thyroiditis is characterized by thyroid peroxidase antibodies (TPOAb). In a study of selenium supplementation by Gartner, a reduction in TPOAb occurred along with signs of improved thyroid gland health.)

However, we don’t know what blood levels of selenium need to be to have a beneficial effect.

• (Ventura and colleagues caution that “in most of the studies that focus on the relevance of selenium to thyroid disease, the authors did not measure selenium concentration prior to, during, and after supplementation.”)

A person can analyze the data, showing how well the claim is based on reasonable assumptions or premises that a community can agree with.

Analysis usually relies on warrants, premises or presumptions, consisting of broader knowledge or theories about the way things work. We can’t critically reason about evidence without having some foundational beliefs, general knowledge, an ethical value system, and a context in which to interpret data.

Critical thinking during analysis considers the limitations of the data to support the claim, or other claims that could arise from the data, or other data that was not considered when arriving at this claim.

The Cambridge Dictionary starts with the negative connotation of bias:

“the action of supporting or opposing a particular person or thing in an unfair way, because of allowing personal opinions to influence your judgment.”

A bias is like a leaning toward or against something. The problem is that it is can be “unfair” and it can “influence your judgment” and cause reasoning to go off track.

Here’s how bias, opinion, and reasoning fit together like a chain:

• If you have an unfair bias that leads you to form an unexamined opinion, it can lead to fallacious or unethical reasoning.

Unfair bias: “Supplements like selenium are generally more beneficial for health than treating hypothyroidism with thyroid hormones.“

Fallacious opinion based on unfair bias: “One should try to avoid treatment with thyroid hormones and rely only on supplements like selenium.”

But the very same dictionary provides a neutral, potentially positive meaning #2:

“the fact of preferring a particular subject or thing: For example,
‘She showed a scientific bias at an early age.'”

Neutral, or potentially positive bias: “One should consider the benefits of natural supplements like selenium in addition to treating geniune hypothyroidism with thyroid hormones.“

Not all biases are bad, and opinions are necessary; our value systems and preferences build necessary biases that make community and everyday possible.

If you fall in love with someone, you have a bias toward them.

Almost every parent has a bias toward their own children. Parents tend to prefer and favor their own children more than other people’s children. It’s natural.

Having a good bias makes it easy to choose and make decisions. Biases form habits and attitudes so that we can operate efficiently in urgent situations. There is a time and place to ponder and reflect. But in much of daily life, it would be very frustrating to stop and “overthink” things all the time.

We can have intellectual biases that are neutral or positive, too.

Here’s my example of a neutral or positive intellectual bias:

• I confess that I have a strong bias toward preferring thyroid scientific articles over popular books and videos on thyroid health.

Is that a bad bias or opinion? Not necessarily.

Is my opinion going to contribute to a social bias? Am I going to judge someone else as less worthy than me if they don’t share my bias and the opinions it leads to? Will I become arrogant or intolerant?

I hope not! Once I’m aware of my bias and the grounds of my opinion, I can be more tolerant and accepting that other people have different biases and opinions. All I have to do is remember the times in my own life when I didn’t hold this bias.

We’ll get farther if we understand that it’s not healthy to have too many unexamined biases and unquestioned opinions.

Your cognitive bias is …

Your cognitive bias is…

One of the best resources is by The School of Thought, a 501c3 non profit organization in the US, created by Jesse Richardson, Andy Smith, Som Meaden, and Flip Creative. They run two very good websites:

• https://yourbias.is/
• https://yourlogicalfallacyis.com/

Their entire content is published under a creative commons attribution and noncommercial license 2020, and therefore we can redistribute their infographics free of charge!

The most common biases I see on thyroid support groups include:

• “Anchoring: The first thing you judge influences your judgment of all that follows.” For example, if we first experience LT4 monotherapy and it goes badly in a certain way, it influences our judgment of subsequent thyroid therapies we try.
• “Confirmation bias: You favor things that confirm your existing beliefs.” If you believe that optimal thyroid hormone levels mean having a Free T4 at mid-range and a Free T3 in the upper third of reference, you may seek only evidence in posts online and in support groups that confirm this belief is true for all people everywhere. You are not going to seek out thyroid science articles by Ito et al, or Hoermann et al, that show people becoming symptom-free when their FT4 is at top of reference and their FT3 is somewhere around mid-reference.
• “The halo effect: How much you like someone, or how attractive they are, influences your other judgments of them.” Dr. Westin Childs delivers attractive, authoritative videos, and he’s a charismatic personality. I might grow to really like him. Therefore, what he teaches about thyroid health must all be equally true and authoritative. He wears a halo in my eyes, and my judgments of his claims are influenced by that halo.
• “The backfire effect: When some aspect of your core beliefs is challenged, it can cause you to believe even more strongly.” Some patients hold very strongly the myth that Reverse T3 blocks T3 from getting into cells. When this belief is challenged by pointing out that no known thyroid hormone transporters prefer to carry RT3 over T3 and T4 into cells, the strong believer may say “I still believe it’s true because I felt hypothyroid when my Reverse T3 was above 15.” They have no way of supporting their belief scientifically, but they are resolved to believe it is a valid explanation for their experience.

Fallacies are common mistakes in reasoning that are weaknesses of human psychology found in every community.

For example, the “bandwagon fallacy” reasons that the individual should always follow the crowd: “Everyone I know improves with treatment X, so you should also improve with treatment X,” without further reasons as to why it works for the crowd and why it might not work for an individual.

Many lists of fallacies can be found online at https://yourlogicalfallacyis.com/

Common fallacies found in thyroid support groups include:

Appeal to nature

“Arguing that because something is ‘natural’ it is therefore valid, justified, inevitable, good or ideal.”

Thyroid fallacy example: Some people believe that desiccated thyroid extract (DTE), commonly known as “Natural desiccated thyroid” by patient groups, is more natural than, and therefore superior to, synthetic thyroid hormone pharmaceuticals because it is animal-derived. However,

• Synthetic thyroid hormone pharmaceuticals also contain molecules that are equally “bioidentical” — our bodies recognize the T4 hormone contained in Synthroid just as they recognize the levothyroxine provided by NDT medication.
• Also, how natural is it to live off the thyroid hormones of another animal? Any disease sets up a situation in which we need extraordinary aids or therapies to overcome natural disabilities.
• Thyroid disabilities are often caused by defects of nature, and the disabilities are not good.

Composition / Division

“Assuming that what’s true about one part of something has to be applied to all, or other, parts of it.”

Thyroid fallacy example: Many thyroid patients complain against ALL endocrinologists as rigid and unscientific doctors who are horrible at treating thyroid conditions, because MANY of them certainly are, as reported by thyroid patients. However,

• Not all endocrinologists are the same, and endocrinologists often have the professional freedom to treat patients’ thyroid condition as they believe is best.
• Independent-minded endocrinologists know that the guidelines include a “disclaimer” that permits them to use critical thinking and clinical evidence to treat thyroid disorders in ways that go beyond guidelines.
• Patients occasionally give very positive reports of endocrinologist-guided thyroid therapies, not just for thyroid cancers or hyperthyroidism, but also for hypothyroidism.

Now and then we should question even our favorite thyroid authors and thyroid bloggers, and question our own claims/opinions.

• Consider the strength of evidence that claims are based on and the logic that holds them together.
• Follow an author’s citations and reference list to see whether they truly support a claim. Sometimes people misinterpret the source.
• Do our own keyword searches in scientific databases to see whether other data also supports, or refutes, a claim.
• Inquire whether more recent information has been published.

When reading scientific journal articles, an even deeper level of careful reasoning should be part of the process:

• Question whether the claim/conclusion is dependent on narrow or flawed research methods, such as a study that
  • didn’t measure T3 hormone concentrations (if relevant),
  • didn’t examine patients who had Graves’ disease antibodies (if relevant),
  • didn’t study how desiccated thyroid therapy worked differently than LT4 monotherapy (if relevant).
• A single study can’t do everything, nor even a set of 10 studies. But consider how many conclusions and assumptions are being made by extending findings from a narrow set of research methods to very different populations and situations!
• Discern whether the reasoning employs unexamined premises (biases, opinions) as a filter or lens to structure and analyze the data. For example,
  • Cause-effect relationships: Why is a “nonthyroidal illness” such as ischemic heart disease always considered a cause of low T3 and high Reverse T3, but never consider that this disordered biochemistry can also be caused by thyroid disease and inappropriate therapeutic responses to it? What if, in some thyroid patients, years of therapy-induced low T3 causes ischemic heart disease?
  • Organizing the data set for analysis: Why was the data analyzed through one lens first, and another lens next? For example, many studies look at all the data first through TSH and the boundaries of its reference range. This is because TSH is presumed to be the sensitive indicator of all things thyroid. However, TSH is an indirect measure of thyroid hormones and does not always regulate or respond to them well. How would the results of their analysis differ if they organized patients by tertiles (3 groups) or quintiles (5 groups) ranging from higher T4 and lower T4 levels above, within, and below reference range, and only secondarily consider where their TSH fell?
• Paradigms: The interpretation of data can go very wrong if a theory or a paradigm is blind to any other alternatives, yet conveniently upholds existing medical education, policies, guidelines, pharmaceuticals, and laboratory tests. Research can often act as a way of reinforcing and validating a cherished and convenient paradigm, more than the truth about thyroid health.