Thyroid peer support: Sharing wisely and seeking evidence

We recently began a new support group on Facebook called “Thyroid Patients Canada Support.” It’s a private, patients-only group, with international members, peer-led by thyroid patients.

As a patient, if you’d like to join, you must answer 2 questions and permit us to view your Facebook profile (make it temporarily public).

In this post, I’d like to explain the first two of three principles:

1. Share wisely.
2. Seek evidence.

I also address three good questions we often have as patients:

• Why is science so valuable? Isn’t it also fallible?
• Why can’t we just find a doctor who knows the science?
• Don’t I need special skills or training?

Overview

In our Thyroid Patients Canada Support Group, we want to uphold the values we articulated as we registered our Thyroid Patients Canada organization as a nonprofit corporation at the federal level in February, 2020. We stated our purpose as the following:

“To promote health by providing individuals with thyroid disabilities with access to patient-led peer support communities and science-based public education, and by publicly advocating for improvements to thyroid health care policy and research.”

Health and truth go hand in hand.

To be consistent with our stated aim to provide “science-based public education,” we will ask members, moderators and admins to pledge to aim for “science-based,” and more broadly, “evidence-based” patient-led peer support.

The basic principles are simple:

1. Share wisely
2. Seek evidence
3. Reason carefully (This section will be shared in the next post)

These are not achievements, but methods.

Supporting each other is not about perfection. It’s about seeking health and truth together, through conversation.

These are principles that build an informative, supportive thyroid patient community.

#1. Share wisely

Sharing wisely involves two types of sharing: 

1. Sharing our own health information and stories
2. Sharing links to thyroid information posted online

With the freedom to share comes responsibility.

Be aware of privacy risks.

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. 

Respect others’ privacy.

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.

Even our tips and advice are our own. Ask for consent, please.

Think critically about shared links.

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.

Avoid links to risky content

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

Facebook can remove any groups and pages without notice.

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

Even without the real threat of Facebook censorship (according to their stated community standards), it’s important for our organization’s health.

Some discussion topics can

• put our nonprofit association’s public reputation at risk
• 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.

Frame and introduce what you share.

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?

#2. Seek evidence.

To a thyroid patient community, “evidence” comes from two main sources:

1. Primary data from patients’ own lab tests and experiences of thyroid disease and therapy, and
2. Evidence from published thyroid science found in peer-reviewed journals, the ultimate source of thyroid knowledge.

Primary data from each other, as patients

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

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.

How to ethically get past paywalls on articles

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.

Why is science so valuable? Isn’t it also fallible?

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.

Problems in thyroid health care often come from not paying attention to thyroid science.

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.

Why can’t we just find a doctor who knows the science?

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 affect every 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, it takes a community to heal a thyroid patient. 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.

A community that includes a few well-informed thyroid patients can help us locate and interpret the scientific information we need to enhance our thyroid health.

If we read thyroid journal articles, we have no reason to boast or 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.

Don’t I need special skills or training?

Have confidence in your lifelong learning ability.

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 students are not even going to question what they learn.

But YOU, as a patient, can focus your search for knowledge. Indeed, you must. There is no exam. Instead, you have a suffering body to take care of, and it’s the only body you have. 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.

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!

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.

The next post, coming soon:

• Principle 3: Reason Carefully…