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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.
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 a combination of symptoms of a thyroid imbalance. Most thyroid cancer patients require surgery to remove the thyroid — and this can be daunting, including the idea of a several-inch incision in the neck and resulting scar. After surgery, many thyroid cancer patients will need to have followup radioactive iodine 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 they need. And the thyroid cancer patient in your life will require 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 cancer.
These are just a few of the conditions that can affect thyroid patients. There are autoimmune diseases — Graves’ disease and Hashimoto’s — 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 sign, 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 doctors themselves — insist simplistically that thyroid disease is “easy to diagnose, easy to treat” even though patients know that this is far from the truth. As for “easy to diagnose,” your loved one may have even struggled to get diagnosed — to get 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 we 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!” Or the doctor who diagnosed a woman with hyperthyroidism by clapping his hands together loudly behind her head, chortling: “Oh, I can always tell you hypers, because you practically jump off the examining table when I do that!”
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 trying to sell us cockamamie Thyro-this and Thyro-that “cures” for thyroid disease that in many cases can make things a whole lot worse — or at best, not help at all.
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.
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?”
Husbands criticize their wives for gaining weight. Teenagers whisper behind a friend’s back about anorexia. Coworkers complain that their colleague is “lazy.”
Once we’re diagnosed, treatment is not an easy fix for many thyroid patients. Doctors try to rush hyperthyroid patients into permanently disabling the thyroid with a radioactive treatment that will make them hypothyroid for life. Many doctors believe there is only one medication to treat hypothyroidism — a medication 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. The conventional medical establishment 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.”
I’m here to ask 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. Be the person who understands that while thyroid disease may not be visible, it is causing your friend or loved one to suffer. Be the person who understands that even though celebrities aren’t talking about thyroid disease, and sports figures aren’t wearing bracelets to promote thyroid awareness, that this is a genuine, difficult, and life-changing diagnosis.
Be the person who opens mind and heart to the thyroid patients in your life. Be the person who listens, and learns about the struggles and challenges. Be the person who empowers the thyroid patient in your life, by helping him or her do as much as possible to improve health. Be the person to help find doctors and practitioners who do not view your friend or relative as a cookie-cutter patient on a thyroid assembly line. 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, for fun!
Thyroid Patient Advocate