Support group benefits and how to foster them

Many of us thrive on a sense of community and the feeling of belonging in our identity as a “thyroid patient,” knowing that we are not alone in our thyroid-related struggles, anxieties, and questions.

This involves sending interpersonal messages of kindness, support, similar experiences, and sympathy.

How we can support

• Welcome new members with kindness.
• Offer some sort of affirmation before expressing doubts or disagreement.
• Repeat some specific information the poster has given to confirm that you have carefully read/listened.
• Ask for more information when not enough is there to provide helpful support.
• Demonstrate by your own sharing of stories that the forum is a safe space to be vulnerable and share our thyroid stories
• Express appreciation and heartfelt congratulations for others’ successes
• Acknowledge and respect that each of us is unique in our disease, our response to therapies, and our thyroid journey.

This involves

• Helping each other to understand our disease and therapy more deeply.
• Helping each other find credible answers by citing and linking to sources.
• Reviewing sources that we link to, whether we trust them or not. Being open to mutual education.
• While offering tips to peers, providing cautions, “only if or when” statements, and limitations about using them.

How we can support

• Thyroid patients who have more advanced knowledge, critical thinking, and research skills ought to model their online search skills, making transparent their step by step searching, source-evaluating, careful reading, and thinking processes.
• Anyone, not just official moderators, should feel encouraged to play the role of peer mentor and peer educator, as long as they are not just offering advice but supporting and analyzing their own advice and being open to respectful mutual correction.

Evidence must be tested and subject to further inquiry, whether it comes from

• thyroid books,
• scientific articles,
• patient community websites like STTM,
• blog posts,
• mainstream medical websites like Medscape or Healthline,
• alternative medical websites like the National Academy of Hypothyroidism,
• and various doctors’ videos.

How we can support

• Consider sharing lists, infographics, and memes that are based on scientific sources. (Keep tabs on our Memes page. It will gradually get populated with a set of support-group infographics anyone can share anywhere they want to, not just in our support forum).
• The sharer of a link should explain what their current assessment of the source is and why it could be useful to others, or what questions they have about it, not simply share it without framing or introducing it.
• Commenters on the shared item should feel free to praise or critically analyze the source without fear of offending the person who shared it.
• All sources must be held accountable to science, logic, and communication ethics standards.
• For in-depth information on this point see the Support Group Principles page.

Where little to no scientific evidence exists, good support forums can engage in crowd-sourcing of patient experience to discover potential solutions for therapy problems or symptoms.

Many solutions that have worked for individuals are within our reach and may involve low cost and low risk of harm.

How we can support

• Always check first to see if scientific evidence exists on the topic of a nutritional supplement, diet, or behavioral practice.
• Encourage each other to check for evidence of potential risks and harms, such as toxicity levels of substances.
• When giving advice based on personal experience, always use “I” statements, and make clear that your own experience is the source of your advice or suggestions.

We each have our own experience of diagnosis and its challenges. We can also stay up to date on the current diagnostic guidelines. We can share a lot of knowledge on the diagnostic process and criteria for common and rare thyroid disorders:

• hyper- or hypothyroidism,
• central hypothyroidism,
• atrophic thyroiditis,
• Graves’ eye disease, or
• Thyroid gland conditions such as nodules, goiter and cancers.

Some diagnostic situations are borderline and challenging. Sometimes symptoms are not necessarily from thyroid disease but from other conditions that have similar symptoms.

How we can support

• Discover official diagnostic criteria for the major categories of thyroid disease, but also learn what their common blind spots are for these diagnostic methods.
• Offer tips on getting tested for FT3 and FT4, since a doctor can’t often test these if TSH is normal because of draconian restrictions against ordering so-called “unnecessary” tests. Sometimes it means using user-pay health services.
• Use SPINA-Thyr app to analyze pre-therapy TSH, FT4 and FT3 levels for GT = thyroid gland health, and TSHi – pituitary TSH secretion.
• Seek to understand other health conditions that can manifest with thyroid-like symptoms, like anemia, adrenal insufficiency, sleep apnea, other undiagnosed autoimmune diseases, and drug side effects. Of course, these conditions can also be worsened by thyroid excess or deficiency: the cause and effect goes both ways.
• Understand the full spectrum of thyroid autoimmunity and how these conditions overlap and function. Be careful not to assume everyone with hypothyroidism is a Hashimoto’s patient just because that’s the most common cause.
• Do not rely too much on the TSH alone to say “you need therapy,” because an elevated TSH below 10 (the cutoff for subclinical vs. overt hypo) can often succeed in supplying enough thyroid hormones from a failing thyroid. Also, Graves’ disease antibodies can over-suppress TSH in people who are not clinically hyper. This is why we often need more than TSH and often use SPINA-Thyr.
• Learn the tricks of raising the TSH without making yourself more hypothyroid. The TSH is a volatile hormone and can be easily lowered or raised by a wide variety of factors.
• Understand that Graves Eye Disease (bulging eyes) is only found in a fraction of hyperthyroid patients. Some hyperthyroid patients don’t get diagnosed because doctors mistakenly expect it to be a sign in all Graves’ patients.
• Understand how thyroid health can alter during different phases of life such as childhood, pregnancy, menopause, and aging.
• Learn how to spot the telltale signs of the rarer thyroid disorders, such as central hypothyroidism. 

This includes helping each other discover which of our symptoms are likely to arise from

• our unique thyroid diseases,
• thyroid antibodies,
• our thyroid medications and
• our thyroid hormone levels (lab test results),

and which ones may be related to

• other concurrent health conditions,
• medications,
• supplements,
• diet,
• or even genetics.

It also involves providing tips on measures we personally took to resolve or minimize distressing or troubling symptoms.

How we can support

• In addition to giving tips based on personal experience, peers can and should seek scientific studies of thyroid symptoms.
• Reason openly and logically about how thyroid-like symptoms can arise from non-thyroidal causes such as other autoimmune diseases in an autoimmune thyroid patient.
• Acknowledge that symptoms often arise from multiple or complex causes.
• Acknowledge that thyroid symptoms may vary from person to person.
• Realize that some symptoms appear at both ends of the spectrum of hyper to hypo, such as fatigue, cardiovascular symptoms, psychological symptoms like anxiety, and hair loss.
• When providing tips on managing symptoms, use “I” to clarify when it’s based on personal experience.
• As much as possible, try to explain why and how certain therapies one has tried may actually work to minimize or eliminate symptoms: What makes you think symptom relief was due to that intervention?

This involves

• Helping each other discern why and when to ask doctors for certain tests to be done.
• Intelligently interpreting each other’s thyroid-related test results.
• Helping to generate lists of questions and concerns for our next doctor’s visit.
• Helping us deal with medical refusal to perform tests, or a laboratory’s test cancellation.

How we can support

• Avoid falling into the fallacy of “biochemical bigotry,” which is either believing 1) that “anywhere in the population reference is good enough,” or on the other hand, 2) that “only a specific place in the reference range for TSH, FT4 and/or FT3, is optimal or safe for all thyroid patients at all times.”
• Acknowledge that “optimal” is individualized, situational, and is often discovered through trial and error and fine tuning.
• Realize that “optimal” and “pathological” results can vary across different populations on different thyroid therapies and with different thyroid health conditions.
• Help each other learn how to use thyroid hormone analysis apps like SPINA-Thyr when on no thyroid hormone therapy or only LT4-monotherapy.
• Understand that some T4 will always be metabolized to some T3 and some Reverse T3, so these hormones should be interpreted in context with each other.
• Realize that a higher T3 can compensate for a lower T4 or the complete absence of T4 in blood, but not vice-versa.
• Avoid propagating unscientific myths still circulating on many thyroid websites, like
  • The idea that the RT3 hormone is intrinsically evil and must always be low (this can lead to lowering T4 too far to get rid of RT3)
  • The idea that RT3 blocks T3 from entering cells or receptors (it does not)
  • The idea that RT3 significantly hinders T4-T3 conversion (its effect is not strong enough)
  • The idea that RT3 is caused by iron or cortisol problems (a host of severe health problems in the category of “nonthryoidal illness” cause RT3 elevation even without these issues).
  • Instead, try to understand how deiodinases create T3 and RT3.
• Seek out and refer to the best scientific studies on lab test results and their effects on health during specific therapies.
• Be careful about applying desiccated thyroid patients’ lab results to LT4 monotherapy patients’ lab results, and vice versa.
• Consult official sources to understand regional policies on thyroid test ordering and cancellation.

This may involve

• Helping each other understand the pros and cons of various thyroid pharmaceuticals and their combinations.
• Distinguishing signs of overdose/underdose from an adverse reaction, allergy, or side-effect.
• Avoiding common mistakes in optimizing doses.
• Understanding how pharmaceuticals interact with other medications, supplements and health conditions.
• Addressing concerns about medication quality control, local supply and shortages.
• Providing peer support with patient-pharmacist interactions.
• Troubleshooting challenges with health insurance and affording medications.

How we can support

• Avoid “thyroid pharma prejudice,” which is the fallacy that one thyroid medication is intrinsically better or worse than another for all patients at all times, or that one ratio of T4:T3 in thyroid medication is correct and all others are incorrect.
• Help each other find accurate drug information from the pharmaceutical companies themselves. Search for the Canadian product monographs, such as
  • Pfizer’s Cytomel (PDF)
  • ERFA’s Thyroid (desiccated)
  • Synthroid (Levothyroxine)
  • Eltroxin (Levothyroxine)
• Check official drug shortage reporting websites such as https://www.drugshortagescanada.ca/
• Seek and refer to scientific research on dosing, adverse effects and side-effects when it can be found.
• Offer your own individual experiences with pharmaceuticals, pharmacies, access, and affordability.
• Avoid counselling anything illegal regarding importing of drugs from other countries.
• Prevent sharing of underground pharma supply sources, since we need these to remain private. Some patients rely on self-treatment as a last resort when their local health care system can’t support the therapy they need.

This may involve

• Helping each other process what a doctor said to us about our thyroid health in a recent appointment.
• Understanding the evidence and assumptions a doctor’s decisions may be based on.
• Helping us to communicate productively with our existing doctors despite interpersonal challenges and power relationships.
• Helping each other find a new doctor who may be more willing to listen or more capable of assisting with a special thyroid problem.

How we can support

• Sympathize with patients who report distress after a medical appointment, but also give doctors some benefit of the doubt, realizing that it is a second-hand report.
• Be careful not to jump to quick judgments about a doctor’s competence and to take sides against them.
• Be willing to accept that each doctor may have limitations and may only be useful for certain types of thyroid patients or thyroid therapies.
• Sometimes a patient may need more than one doctor, and some may be willing to pay a health care practitioner for thyroid health care.
• Understand how medical education, laws, guidelines, power relationships, culture, and professional restrictions on physicians shape what they say or do.
• Be careful not to put other patients’ therapy at risk by inciting complaints about a thyroid doctor for minor mistakes or unfair reasons.
• Give good evidence-based reasons for disagreeing or agreeing with what a patient reports that a doctor said or how they said it.
• Consider steps a patient can take to establish a productive relationship with their doctor.
• Assist a fellow patient to put up boundaries for their mental health and self-respect, to self-advocate, to manage valid complaints ethically, and to discern when they may need to move on to find a different doctor.
• Be hesitant about giving a personal opinion that a peer should “fire” their doctor and find a new one; sometimes one may be able to work with a doctor’s limitations, the doctor may change their ways, and it may not always be possible or wise to change doctors when better options are not always available in one’s region.

Peer can help in various ways:

• Helping each other manage the anxiety and uncertainty of learning about thyroid cancers, nodules and goiter.
• Helping manage the stress of undergoing
  • gland biopsies,
  • therapy withdrawal experiments,
  • TRH-TSH stimulation tests,
  • thyroid uptake scans,
  • partial or full thyroidectomies, and
  • radioiodine thyroid ablation.
• Understanding various treatment options, risks, benefits, and the challenges of doctors and patients collaborating to make difficult medical decisions.
• Providing emotional peer support when preparing for gland surgeries and interventions.
• Supporting each other through healing and the aftermath of adjusting to new therapies.

How we can support

• Seek and offer evidence-based tips and well-examined sources.
• Express compassion and help each other manage anxiety.
• Offer one’s own stories and experiences.
• Offer cautions in ways that do not add to the burden of fear and anxiety.