
The support of friends and family can
make all the difference to thyroid patients.
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 typically does not have many symptoms to
start, but will usually require surgery to remove the thyroid -- and
this can be daunting, the of a several-inch incision in the neck. 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 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 treatment for hypothyroidism, along with periodic 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, chortled: "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.
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!
Live well,
Mary Shomon
Thyroid Patient Advocate
I couldn't have explained it any better.