An Open Letter to Family and Friends of Thyroid Patients

It's difficult to fully explain what's going on with a chronic disease that is, in many ways, "invisible" to everyone but the sufferer. But perhaps this letter can be a conversation-starter, or help in some way to help those who love you understand just a little bit better what it is like to have thyroid disease.

couple reading a letter
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Sample Letter

Dear Friend/Family Member:

Someone you care about has thyroid disease. You may not know much about thyroid problems, but like many of us, you've heard things here and there. If anything, you probably associate the thyroid with weight problems or think it's an excuse lazy people use for being overweight. Or, you may already know someone else who's taking thyroid medication, maybe Synthroid, and they seem to be doing fine, so you assume thyroid disease will be a similar experience for your friend/family member.

Maybe you've seen a celebrity on television, like Modern Family star Sofia Vergara, talking about how easy it is to manage her own thyroid disease, and assumed it's equally easy for everyone with a thyroid problem? 

There's so much more to thyroid disease, and while we can't cover it all in this letter, let's try, briefly, to give you a sense of what your loved one is facing. So could you please set aside for a few moments the information you do have about thyroid disease, and open your mind and heart?

The thyroid is our master gland of metabolism and energy. Every single body function that requires oxygen and energy, basically, everything that takes place in your body, requires thyroid hormone in proper amounts. That means we need the proper balance of thyroid hormone in order to feel and live well. We need thyroid hormone to think clearly and remember things, to maintain a good mood, to grow hair and nails, to have basic energy to get through the day, to see well, to digest our food, to burn calories, to be fertile, to get pregnant and have a healthy baby, to have a good sex drive, and much more.

In some ways, you can think about thyroid hormone as the gasoline that makes the car go. No gas, and there's no way to move forward.

Typically, a thyroid problem comes in one of several forms.

If Your Loved One Is Hyperthyroid

Your loved one may be hyperthyroid. That means that the thyroid gland is overactive and producing too much thyroid hormone. When the thyroid becomes overactive, you can think of it a bit like the gas pedal on the car is stuck, and the engine is flooding.

If your loved one is going through hyperthyroidism, he or she may be feeling extremely anxious and nervous, with a rapidly beating heart, higher blood pressure, and even heart palpitations. Some people describe the sensation as like their heart is beating so hard and loud everyone around them can even see it and hear it! They may be hungry and thirsty all the time, suffering from diarrhea, and losing weight. Others may even be wondering, wrongly, if your loved one's rapid weight loss is due to an eating disorder or some sort of illness. His or her eyes may be sore, sensitive, gritty and irritated, and vision can even become blurry. Sleep may be difficult or impossible, and lack of sleep combined with the body zooming along at 100 miles an hour can cause extreme exhaustion and muscle weakness.

Frankly, people who are in the throes of hyperthyroidism have said that they feel and look like someone who is strung out on drugs or who has had 20 cups of coffee after not sleeping for a week. With heart pounding, and all body systems going full tilt, your jittery, stressed-out hyperthyroid loved one may even feel like he or she is losing it, ready to fall apart at any moment.

If Your Loved One Is Hypothyroid

If your loved one is hypothyroid, they are facing different challenges. Hypothyroidism means the thyroid is underactive, and not producing enough of the energy and oxygen-delivering thyroid hormone. This is like trying to get somewhere with barely enough gas and feet that can't even reach the gas pedal. If your loved one is hypothyroid, he or she may be feeling sluggish, spaced out, and exhausted all the time.

Think about the worst flu you've ever had, and how tired, and achy and exhausted you felt. Now imagine waking up every day feeling like that, but having to get up, go to work/school and take care of yourself and others while struggling through the day. Depression and mood changes are common, as are memory problems and being fuzzy-brained, what patients call "brain fog." Your loved one may look in a mirror and not recognize herself (the vast majority of thyroid patients, in general, are women, who are seven to ten times more likely to have a thyroid problem compared to men.) When she looks in the mirror, she sees the outer half of her eyebrows are thin or missing, her hair is thin, dry, coarse and falling out, her face and eyelids are puffy, her face is bloated and puffy, and she may have gained weight, despite eating less and working out more than everyone else around her.

With hypothyroidism, anything and everything can be slow, even digestion, which can cause constipation. For women, periods can be worse, and come more often than before. Menopause can be worse, and come earlier than for other women. And after pregnancy, hypothyroidism can worsen postpartum fatigue and depression, and make breastfeeding difficult or impossible. And then there's that issue of weight gain. Your loved one may be following the most rigorous and healthy diet and exercise program, and yet be unable to lose weight. He or she might even be gaining weight on that program.

If Your Loved One Has Thyroid Cancer

If your loved one has thyroid cancer, they have an entirely different challenge. The majority of thyroid cancers are considered highly treatable and survivable, so doctors and others often cavalierly refer to thyroid cancer as "the good cancer." But the reality is, no cancer is "good," and someone who has thyroid cancer has cancer, "the big C." Cancer as a concept is frightening and raises fears and concerns.

Someone with thyroid cancer initially may have few, if any, symptoms. In some cases, however, they may have hypothyroid, hyperthyroid, or mixed thyroid symptoms.

Most thyroid cancer patients require surgery to remove the thyroid. This surgery can feel daunting, including the idea of a several-inch incision in the neck and resulting visible scar. After surgery, many thyroid cancer patients will need to have follow-up radioactive iodine (RAI) treatment to ensure that all the cancerous tissue was removed, and it can be many weeks after surgery before a thyroid cancer patient, who by that point is typically quite hypothyroid, can start thyroid medication to again get lifesaving thyroid hormone.

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The thyroid cancer patient in your life will also require a lifetime of medical treatment for the resulting hypothyroidism, along with periodic and sometimes physically challenging follow-ups and scans to monitor for a recurrence of the thyroid cancer.

These are just a few of the conditions that can affect thyroid patients. There are autoimmune diseases such as Graves' disease and Hashimoto's thyroiditis that can be at the root of hyperthyroidism and hypothyroidism. Sometimes people develop a goiter, an enlarged thyroid, or benign nodules that cause symptoms. Sometimes a temporary infection causes thyroiditis. And again, these problems can be difficult to pinpoint, misdiagnosed as everything under the sun except a thyroid condition, and even when diagnosed, poorly treated.

So what many thyroid patients have in common is living in a world that overlooks, downplays, poorly treats, and sometimes even makes fun of, their condition.

Magazine articles, books by doctors, patients brochures in doctors offices, and many doctors themselves insist simplistically that thyroid disease is "easy to diagnose, and easy to treat" even though patients know that this is far from the truth. As for "easy to diagnose," your loved one may have struggled to get diagnosed, or be taken seriously in the first place. Doctors regularly misdiagnose hyperthyroid patients as having an eating or anxiety disorder, and hypothyroid patients as having stress, depression, PMS, or menopause.

Worse yet are the truly unsympathetic physicians that patients all too frequently encounter in thyroid care. Like the marathon runner with hypothyroidism who was in training, on a strict diet, and still gaining weight and was told by her doctor that she had "fork in mouth disease." Or the endocrinologists who tell patients, "Well, you should be glad, you know, because you have the good cancer."

There are advertisements and comedians who use "thyroid problem" as the not-so-secret code to describe someone who is fat. And there's a whole realm of scam artists out there hawking Thyro-this and Thyro-that "cures" for thyroid disease that in many cases can make things a whole lot worse, or at best, empty bank accounts and don't help.

Even Oprah admitted she had a thyroid problem, then claimed it went away, then said she had it but it wasn't an excuse for her weight gain, then decided not to get treatment, and continues to struggle with her health issues. Oprah has the best doctors and advisers and all the money in the world to deal with a thyroid condition, and yet even she is confused and struggling.

And perhaps saddest of all, there are friends and relatives who say "I don't buy this thyroid disease thing, it's just an excuse for not losing weight" or "Thyroid? Hah! She's just lazy!" Or, "Why can't he just get over it and get back to normal?" Or "Why can't my wife look like Sofia Vergara?"

Husbands criticize their wives for gaining weight. Teenagers whisper behind a friend's back about anorexia. Coworkers complain that their colleague is "lazy."

Once diagnosed, treatment is not an easy fix for many thyroid patients. The conventional medical world believes that treatment for thyroid problems is one-size-fits-all. This cavalier attitude means that many thyroid patients struggle for years to live and feel well, despite being diagnosed and "treated."

Doctors try to rush hyperthyroid patients into permanently disabling the thyroid with a radioactive treatment that will make them hypothyroid for life.

2:17

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Many doctors believe there is only one medication to treat hypothyroidism, a drug that does not resolve symptoms for all patients. When patients learn about other available options, doctors may stonewall, refuse additional treatments, or push antidepressants, cholesterol medications, weight loss pills and more, instead of addressing the thyroid issues.

So, let's get the point. We are asking you, in a world where thyroid patients are disregarded, overlooked, misdiagnosed, abused, exploited, mocked, and ignored, to be the person who truly "gets it" for the thyroid patient in your life.

You can be the person who understands that while thyroid disease may not be visible, it is causing your friend or loved one to suffer.

Can you be the person who opens mind and heart to the thyroid patients in your life? Can you be the person who listens, and learns about the struggles and challenges, the person who empowers the thyroid patient in your life, by helping him or her do as much as possible to improve health? Can you be the person to search for doctors and practitioners who do not view your friend or relative as a cookie-cutter patient on a thyroid assembly line? Can you be the person who helps the thyroid patient in your life to maintain balance, to help find time for rest, for exercise, for stress reduction, for self-care, for proper nutrition, and for fun?

If you can be that person, then the thyroid patient in your life is truly fortunate to have you, and on behalf of all thyroid patients, thank you.

5 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. National Institute of Diabetes and Digestive and Kidney Diseases. Hyperthyroidism (Overactive Thyroid).

  2. Dayan CM, Panicker V. Hypothyroidism and depressionEur Thyroid J. 2013;2(3):168‐179. doi:10.1159/000353777

  3. National Institute of Diabetes and Digestive and Kidney Diseases. Hypothyroidism (Underactive Thyroid).

  4. American Cancer Society. Surgery for Thyroid Cancer.

  5. American Cancer Society. Radioactive Iodine (Radioiodine) Therapy for Thyroid Cancer.

By Mary Shomon
Mary Shomon is a writer and hormonal health and thyroid advocate. She is the author of "The Thyroid Diet Revolution."