Advocating
for Your Health
Just
thinking about ice cream made me gain weight.
It was common to be more tired when I woke up than when I went to sleep. I ran a total of five miles four days a week
to stay healthy. I was on Weight
Watchers because I couldn’t lose the baby weight from my last pregnancy.
All
of these symptoms weren’t right for how I’d felt before, but the doctor said it
was normal. After all I had: two children under the age of five, worked full
time outside of and inside the home. So
I carried on assuming it would get better.
Fast
forward two years, everything remained the same except the loss of restorative
sleep began to take a toll. At the
urging of my husband, sister and primary care physician I went to see an endocrinologist. An endocrinologist is a specialized doctor
who treats a person’s Endocrine System that, while small, affects an enormous
amount of your body’s health. It is made
up of the pituitary gland, thyroid, adrenal glands and ovaries/testicles. This intricate system is responsible for
regulating the hormones that control: metabolism, growth and development,
tissue function, sleep, and mood regulation among other things. When any one part of the system malfunctions,
it disrupts the well-oiled machine that is your body. In a majority of cases, irregularities in the
system are hereditary. In others, it’s a
result of aging.
According
to the American Medical Association, endocrinologists must receive several
years of training due to the specific nature of the system. They must have four
years of medical school, three years of residency, and another two to three
years of specialized training. While
they are highly trained in a specific area, that doesn’t necessarily make them
the authority. Times have changed, and
it is vital to remember that the roles have changed as well.
Knowing
your family’s medical history is paramount.
Being aware that some diseases or irregularities run in your family will
help you better communicate with your physician. According to Dr. Paul Hiadet of Baylor
College of Medicine, it is crucial to communicate with your doctor. A doctor’s appointment should be a meeting of
“two experts”, as he calls it, because in reality both parties are knowledgeable. It is true that when you see a specialist
they are an expert, as noted in the amount of training they received in order
to get where they are. However, the
patient is also an expert. After all,
you’ve lived with yourself twenty four hours a day, seven days a week, for the
number of years you’ve been alive. You
know how you feel, you know what is “off”, and you have concerns and fears.
In
a partnership, doctors have the practical knowledge, while the patient has the contextual
knowledge.
Research
has shown that patients who work with
their doctors reduce their risk tremendously.
Patients who take an active role in their health, and communicate with
their physicians can better monitor for any hereditary diseases or changes in
their health.
Back in 2005 I was just learning this
concept. After the first appointment
with the “specialist” ended in the suggestion of me making a “Life Change”, I
learned how important it was to advocate for myself. I knew that there was more to what was going
on with me than making a “life change”; after all didn’t I tell her that I was
still on Weight Watchers, ran five miles a day, and had seen a dietitian (who
was just as baffled as I was)? I didn’t
think a life change would help me; there wasn’t much else I could change.
After researching endocrinologists, I
settled on a new one just so I could get a second opinion.
One
physical evaluation of my thyroid and discussion about my blood work, and I was
diagnosed with Hypothyroid disease. Why
was this visit different? We worked
together. He listened to my symptoms,
concerns, self-monitoring strategies, and
family history (my grandmother had hypothyroid disease). It turns out that hereditary, an already weak
functioning thyroid, and two pregnancies that took a heavy toll on my body
conspired to lessen the organ’s effectiveness.
Baylor
College of Medicine and Dr. Hiadet often present programs for patients on how
to effectively communicate with their physicians. They have several suggestions for patients to
help them advocate for themselves and their health. In the program, patients learn how to
effectively communicate and work with their doctors. The main aspect for patients is to ask
questions. If you are unclear about
something your doctor is saying, ask about it.
Often times, doctors use words that are specialized to their profession,
and when the patient doesn’t inquire about the meaning the assumption is they
know what it means. Doctors who are
willing to work with you as a partner do not mind explaining. Before
you can ask questions though, you need to be prepared. Ask to have blood work sent to you. Look over it and mark any places that you
have questions, and be prepared to ask the doctor to explain what an item is
and how it affects you. Know your
symptoms and be able to explain it in context.
Along those lines, also be able to communicate your concerns and
desires. Doctors aren’t mind readers;
they don’t know why you’re really worried.
Over
the course of my treatment (I had to leave the doctor that diagnosed me due to
insurance issues, and transferred to another physician), I have learned how to
advocate for myself and not to take what the doctor says as Gospel.
My health improved over the course of five
years, but then stalled and similar symptoms began to appear…weight gain, inability
to lose weight, tiredness, loss of muscle tone no matter how much I worked
out. Better about advocating for myself,
I didn’t take the standard answer of, “Well, your thyroid levels are
fine.” By continuing to ask questions
and let my physician know what I felt like, I realized that it was time to move
on when nothing (not even my questions and suggestions) were heeded.
During
the program for patient advocacy that Dr. Hiadet presents, patients learn how
to pick a Health Care team.
At the top of the list is respect. Doctors and health care providers have to
respect you as a patient. If a patient
doesn’t feel like the doctor is taking time with them and making themselves
aware of their symptoms and concerns, that team isn’t the one for you.
Only
after my last visit with the current endocrinologist, did I realize we had
reached this point. I didn’t feel
respected as a patient. It was obvious
during that visit that the Physician’s Assistant had not looked at my file beforehand,
wasn’t listening to my concerns, and was only looking at the physical part of
me and not the internal struggle I was battling. The straw that broke the camel’s back and
made me realize this was when he looked at my file and then looked at me and
said, “It says here in your file that you follow Weight Watchers? Correct?
It also says that you work out four times a week?” After I agreed he sarcastically replied, “Do
you really?” At that point, I lost all
respect for him because it was apparent he didn’t respect me.
Thanks
to Social Media and a friend who told me she experienced the same thing, I left
that doctor and found a team that helped me solve the mystery of why my thyroid
levels were fine but I still struggled.
Because I have found a team that I respect and
who respects me, we work together with my primary physician to keep costs
down. The more “hands in the pot” makes
it expensive, so knowing how many doctors need to be involved is important in
picking your team.
My
Granny said it best when she was trying to learn how to use an answering
machine. She said, “Littlebit, I’ve
gotta learn, because times they are a’changing.” Gone are the days when doctors were the authority
and you did exactly what they said and never questioned the diagnosis. Doctors are teammates in your quest for good
health. It takes two people to help you
stay on that path, and it’s important that you take as much of an active role
in it as the doctor. Advocate for
yourself. After all, you know yourself
better than anyone.
Tracey
Huffman
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