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When Your Family Member or Friend Has Thyroid Disease:

An Open Letter to the Family and Friends of Thyroid Patients

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Updated April 22, 2014

When Your Family Member or Friend Has Thyroid Disease:

The support of friends and family can make all the difference to thyroid patients.

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Someone posted on my Facebook wall to ask an important question that in all my years of thyroid patient advocacy, I've never really tackled.

The question is: "How do you explain to your family what you are going through?"

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 "Open Letter to Family and Friends of Thyroid Patients" can be a conversation-starter, or help in some way to help those who love us understand just a little bit better what it is like to have thyroid disease.

Dear Friend/Family Member:

Someone you care about has thyroid disease. You may not know much about thyroid problems, but I imagine, 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 people use for being overweight. Or, you may already know someone else who's taking thyroid medication -- usually Synthroid -- and they seem to be doing fine, so you assume thyroid disease will be similar for your friend/family member.

There's so much more to thyroid disease, and while I can't cover it all in this letter, I'm going to try, briefly, to give you a sense of what your loved one is facing. So can I ask that you set aside for a few moments the information you do have about thyroid disease, to 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 goes on in our bodies! -- 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, 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. 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 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 even, 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 like cancer or AIDS. 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 told me 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, 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 reach the gas pedal. If your loved one is hypothyroid, he or she may be feeling sluggish and tired, 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 feeling that way. Depression -- or feeling blue -- is common, as are memory problems and being fuzzy-brained -- we patients call it "brain fog." Your loved one may look in a mirror and not recognize herself (and I say herself here, because the vast majority of thyroid patients in general are women -- thyroid problems do happen in men, but are seven to ten times more common in women.) Because 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.

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