Tuesday, July 28, 2015

Advocating for Your Health

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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