Doctors can get things wrong, so be an informed patient
BY DR. PATRICK NEUSTATTER
Susan was a patient of mine who had part of her thyroid gland removed many years ago, which was the beginning of a long and troubled saga.
Fearing that the small amount of thyroid gland that was left was not up to the job, she and I were watching closely for signs of insufficiency—until I retired (for which she has never forgiven me).
Her case is a good example of how patients’ involvement and enterprise can be all-important in helping themselves.
Susan was suffering from cold, depression, failure to lose weight, hair loss, dry skin and muscle pains—all symptoms that can indicate an underactive thyroid (hypothyroidism). But her blood tests kept saying she was fine.
We were debating whether to try a small dose of thyroid medicine, but after I retired, she went to many doctors, who all said the blood test is the gold standard, and it’s dangerous to put someone on thyroid medicine if they’re not deficient.
Frustrated, she went from one doctor to the next trying to find someone who would treat the patient, not the blood test.
“I didn’t want to come across as confrontational or illogical,” she said. But she had read enough to be skeptical, and to know that some people believe you can have a normal blood test but still have hypothyroidism.
She knew that sometimes you have to be diagnosed like in the old days—by the doctor listening attentively to patients’ symptoms and carefully examining them.
Soldiering on, she went to see Dr. Donna Hurlock, a gynecologist in Alexandria who specializes in hormonal problems—and who had particular empathy because she had been treated for an underactive thyroid herself.
Hurlock has a slightly different take from many doctors on the value of relying on blood work. She is gathering data to present to “the conventional medical community so they will start paying more attention to their patients and less to the lab,” and so that “patients won’t have to work so hard to get treated properly” she says on her website.
Susan said Hurlock put her on Armour thyroid—an older preparation that is less refined but has a broader spectrum of treatment than levothyroxine, which is used almost exclusively these days to treat people with an underactive thyroid.
Once on the medicine, Susan said, “my hair started to grow back, nails improved, hands warmed up, emotions lifted.” And most gratifying of all, she got her energy back.
The literature is replete with cases of the doctor getting it wrong. “Different surveys suggest that as many as 40 percent of all diagnoses are wrong,” caution Dr. Michael Roizen of the Cleveland Clinic and Dr. Mehmet Oz of “Dr. Oz Show” fame, in their book “YOU: The Smart Patient: An Insider’s Handbook for Getting the Best Treatment.”
This may sound a bit disparaging, but I know getting it right is incredibly hard in the best of times. And influences like time pressures and the restrictions on tests that insurance companies impose certainly compound the problem.
The crucial question is, “What can patients do to help themselves?”
Susan was a good example of what to do.
Being informed about your illness is probably the most crucial thing you can do. This will allow you to question the doctor about the evidence for what he or she is saying is wrong with you. And, as with Susan, it will allow you to know enough to be skeptical of certain notions that doctors say are irrefutable.
Doctors are prone to a habit that is called “anchoring,” warns Dr. Jerome Groopman of Harvard Medical School in his revered book “How Doctors Think.” It means they quickly decide on what is wrong with you and may ignore contradictory evidence.
If your symptoms are common but the diagnosis is something obscure, be skeptical—especially if the diagnosis is based on only one test. Ask, “What else could it be?” Or maybe more pointedly, “What’s the worst thing it could be?”
If there doesn’t seem to be a reasonable diagnosis, or if the prescribed treatment isn’t working, be like Susan and be assertive enough to ask about a second opinion. Hopefully, your doctor will be happy to share the responsibility rather than feel threatened.
This is particularly crucial if there is the question of some serious intervention like surgery or chemotherapy—though in those cases, any primary care doctor will have to send you to a surgeon or oncologist. But use those doctors as a second opinion, not just a mechanic, and have them review the evidence.
Also important for patients: Provide your doctors with as much information as possible. So, gather up all your old office and hospital records, tests, etc. You would be amazed at how often these are not available to the doctor. And present your history in an orderly, concise way.
THE ART OF MEDICINE
Medicine is an art as much as a science, and trying to diagnose an anxious patient who presents with fatigue, aches and pains, headaches, depression, weight gain, abdominal distress and all those nebulous symptoms that can be caused by any number of diseases—or often times nothing you can put your finger on—can tax the most compassionate doctor.
But many people are misdiagnosed. And I am a great believer in the maxim that “God helps those who help themselves”—in this case, meaning be bold enough to be an active and questioning partner in figuring out what’s wrong with you.
WHAT YOU CAN DO
Here are some tips for advocating for yourself:
- Maintain a healthy skepticism. Your doctor will hopefully be supportive and welcome you as part of the team, as he or she should be all too aware many things are hard to diagnose.
- Be informed, but be careful to seek out reliable websites for information. Some good ones: webmd.com, mayoclinic.com, cdc.gov and ama-assn.org.
- Be nice about it, but it’s not unreasonable to quiz your doctors about how they came to their conclusions about your care.
- Be the purveyor of information. Know about your family and personal medical history. Present it succinctly. Get old records, and make sure any test results get to all the doctors treating you.
- If you need a referral to someone more expert, ask your doctor, “Who would you go to?”
- Don’t go overboard. A sore throat and a runny nose; an itchy rash for a couple of days; a pain in some joint that goes away on its own—these probably don’t need an extensive work-up. Trust your doctor’s ability to fly by the seat of his or her pants.
Dr. Patrick Neustatter, a longtime family practitioner, is the medical director of the Lloyd F. Moss Free Clinic. He can be reached at email@example.com.