Experts agree that most Americans with thyroid disease are undiagnosed. They don’t even know they have a thyroid condition! You can’t feel well if you’re not even diagnosed — much less treated — for a chronic illness. Research also shows that even those who are diagnosed and treated for thyroid conditions frequently have test levels outside the reference range. Many people with thyroid disease also are unaware of their treatment options.
Awareness about thyroid disease prevalence, symptoms, testing, diagnosis, and treatment options can be a challenge. But as a thyroid patient, you can do your part to raise the level of thyroid awareness. Helping spread the word about thyroid disease is not just something to do during each January’s commemoration of “Thyroid Awareness Month;” it should be a year-round priority for all of us.
Here are some ways you can personally do your part to help raise awareness of thyroid disease.
Keep your family in the loop
Thyroid conditions can have a genetic and hereditary component. If you have a thyroid condition, you should make your family members aware that you have thyroid disease, and let them know that this increases their own risk of having a thyroid condition. Teach them about the symptoms of thyroid disease and encourage them to get periodic screening and testing as needed. First-degree relatives — siblings, parents, and children — are at the greatest risk.
An important note: If you have medullary thyroid cancer, it’s especially important to have family members screened, as this cancer has a strong genetic component.
Encourage friends to be tested
Similarly, if you are comfortable sharing your health history, make your friends, neighbors, and coworkers aware of your thyroid condition, the common symptoms, and the need for screening and testing. If you become more knowledgeable yourself, you can also suggest thyroid testing when you see the signs of hypothyroidism and hyperthyroidism in people you know.
Don’t forget to remind people that thyroid testing is not part of most annual physicals or pregnancy checkups and that more often than not, they will have to request thyroid evaluation from their healthcare providers.
Join a support group
One way to help spread the word is to help educate people who haven’t been diagnosed yet — or who are earlier in their thyroid journey — by participating in a support group. You can join an online group like the Facebook Thyroid Support group, or participate in live, online, and email support with groups like ThyCa: Thyroid Cancer Survivors’ Association.
Spread the word
If you participate in social media, be sure to share posts, research, graphics, and memes about thyroid disease to help increase awareness with your friends and followers. If you feel comfortable sharing, you may also want to blog or post about your own experience with thyroid symptoms, diagnosis, treatments, and healthcare providers.
Also, when you see misinformation about thyroid disease, or when thyroid disease is overlooked entirely, don’t forget to write “letters to the editor” of your local newspapers, or pen an op-ed piece. You can also leave comments on blogs or social media to help correct misinformation about thyroid disease for other readers.
Support a thyroid organization
There are organizations that focus on creating increased awareness and publicity for thyroid disease, sponsor media campaigns, and create educational materials. These organizations can use your financial or volunteer support. Some worthwhile groups include:
The Kelly G. Ripken Program at Johns Hopkins in Baltimore
Share with your healthcare providers
Potential thyroid patients are not the only people who need increased thyroid awareness. Healthcare providers can often benefit from greater knowledge about thyroid disease symptoms, treatment options, and outcomes.
To that end, if you find solutions or directions that are helpful in managing your thyroid disease and related symptoms, it can be helpful to share them with your healthcare providers, along with any supporting information or materials. Your own experience may — via your provider — be able to benefit other patients in and could potentially reach and impact other practitioners as well.
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Mary Shomon is a thyroid disease, hormonal and autoimmune health writer, and patient advocate. For two decades, Mary has been a leading force advocating for more effective, patient-centered thyroid and hormonal health care. Mary is the New York Times bestselling author of “The Thyroid Diet Revolution,” “Your Healthy Pregnancy with Thyroid Disease,” “Living Well With Hypothyroidism,” and 10 other books on thyroid disease and integrative health. She co-stars in two PBS health specials, “Healthy Hormones,” and “Vibrant for Life.” Follow her on Twitter at @thyroidmary or at her Facebook communities: ThyroidSupport and ThyroidDiet.