When you have a thyroid condition, there are things you need to know to protect your family. There are also significant things your family needs to know about thyroid disease, so they can better support you. Let’s take a look at some questions and answers about what families need to know about thyroid disease risks, diagnosis, treatment, and how to best support thyroid patients.
What do you need to know about your family history and heredity?
While experts do not have hard statistics, if you have a family history of any type of thyroid disease you are at a slightly higher risk of having a thyroid condition yourself. The same is true for autoimmune diseases. A family history of any autoimmune condition — type 1 diabetes, rheumatoid arthritis, multiple sclerosis, or lupus for example — puts you at higher risk of having any autoimmune disease. This includes Hashimoto’s thyroiditis or Graves’ disease. It’s estimated that a quarter to a third of patients with Graves’ disease, for example, have a first-degree relative — parent, sibling, or child — with Graves’ disease or Hashimoto’s.
Surprisingly, while many doctors ask about family history of diseases like cancer or diabetes, a medical history often fails to include questions about a history of thyroid or autoimmune diseases. If you do not know your family history, ask questions. At the same time, be prepared to read between the lines and listen carefully. Family members may not have the vocabulary to explain that: “Grandma had postpartum thyroiditis,” but you may hear that: “Grandma had problems with her hormones after your father was born.” Or, you may hear comments like: “Aunt Jane was always heavy because she had ‘glandular problems’” or, “Your mother’s sister had a goiter.”
If you have a family history of any thyroid or autoimmune disease and haven’t yet been diagnosed, be sure that your medical history includes this information. Also, educate yourself regarding the signs and symptoms of hypothyroidism, hyperthyroidism, and thyroid cancer. If you or first-degree relatives show thyroid symptoms, be sure a thorough thyroid blood test panel, and thyroid imaging tests are performed as needed.
What about thyroid cancer and families?
It’s estimated that as many as 5 percent of patients with thyroid cancer have multiple family members with the same type of thyroid cancer. So, if you have a family history of the more common types of thyroid cancer, such as papillary or follicular, be on the lookout for any signs and symptoms of thyroid cancer.
If you have any family history of medullary thyroid cancer, be aware that it can be hereditary.
R. Michael Tuttle, M.D., an endocrinologist at Memorial Sloan-Kettering Cancer Center in New York City, told the New York Times:
“As many as 25 percent of patients with medullary thyroid cancer do have a familial form of the disease that is inherited. The genetic cause of this form of cancer is known — it is caused by mutations in a structure called the RET proto-oncogene — and genetic testing is commercially available. We recommend genetic testing for all of our patients with medullary thyroid cancer.”
If you have thyroid disease, are your children at risk?
As noted, if you have a history of thyroid disease, your children have a slightly increased risk of also developing a thyroid condition. Because thyroid disease is far more common in women, your daughters face a higher risk than sons.
Make sure the family history of thyroid disease is noted in your child’s medical history. Familiarize yourself with signs and symptoms of various thyroid conditions, and ask for thorough testing if there is any suspicion of a thyroid condition in your children.
You may also want to pay particular attention to your daughters. Urge them to be extra vigilant during periods of hormonal change, such as puberty, fertility treatments, pregnancy, post-partum, and perimenopause/menopause. For girls and women, these times of hormonal change are common triggers for thyroid conditions.
If you are a woman with Graves’ disease during pregnancy, or you’ve had a history of Graves’ disease in the past, you need to be aware that your baby can be at risk before and after birth.
In a pregnant woman, antibodies known as thyroid stimulating immunoglobulins (TSI) can transfer from a mother with a history of Graves’ disease to her baby. These antibodies cross over the placenta and can trigger an overactive thyroid — known as congenital hyperthyroidism or neonatal hyperthyroidism — in the fetus or newborn baby. If you are pregnant, make sure that your healthcare providers are aware of your Graves’ disease history. Careful fetal monitoring for growth and heart rate should occur throughout pregnancy, and most experts recommend a TSI test late in pregnancy to assess the risk of antibody transfer.
What should you do about thyroid disease in seniors?
Older parents and relatives are at higher risk of developing thyroid disease. Because the symptoms can be vague, subtle, or even quite different from typical thyroid symptoms, thyroid disease is frequently overlooked or misdiagnosed in seniors. The American Thyroid Association (ATA) even estimates that up to 25 percent of patients in nursing homes have undiagnosed hypothyroidism. It’s important to know the symptoms of hypothyroidism and hyperthyroidism in seniors and advocate for proper testing and diagnosis in your elderly family members.
What do you tell your family about your thyroid condition?
If you have a thyroid condition, you may want to explain your diagnosis, your prognosis, and treatment. In many cases, your thyroid symptoms may not be visible, but describing the fatigue, lack of energy, brain fog, and other symptoms can go a long way in helping family members understand what you are experiencing.
What do you say to a family member with a thyroid condition?
If your family member has thyroid disease, I encourage you to learn as much as you can about the condition. Ask your loved one questions, and find out how you can best support them in their efforts to feel well and have a normal, healthy life.
Also, keep in mind the following important guidelines:
- Weight gain and fatigue in hypothyroidism are not a lack of will nor do they easily disappear with treatment.
- Hypothyroidism is not a “lazy excuse” for weight gain or difficulty losing weight. It is a reality that many patients have to battle.
- If a loved one has thyroid cancer, do not tell them they have the “good cancer.” Any type of cancer — a thyroid cancer with an excellent prognosis included — is frightening for the patient.
- Just because someone you know is doing fine on their thyroid treatment does not mean that your loved one is doing something wrong if they still don’t feel well.
- Anxiety and depression are common in people with a thyroid condition — even after treatment. Understanding the role these symptoms play in your loved one’s thyroid condition can go a long way toward playing a supportive role.
- Don’t mock your loved one for thyroid symptoms, such as bulging eyes, puffiness, aches and pains, weight gain or loss, or hair loss. It’s hard enough to have residual symptoms that are not resolved with thyroid treatment. No patient needs family members making fun of or deriding them for thyroid-related symptoms.
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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.