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Information May Save Your Life
Tips on Managing Your Own Thyroid Disease, from Marie Savard, MD

by Mary Shomon

These days, you're lucky if your doctor can spend more than ten minutes with you during an examination. And in today's rapidly changing HMO culture, the doctor you see at today's visit may be a totally different doctor next time. Moving from one place to another, your medical records may not always catch up with you. Even then, how many doctors do you know who actually take the time to go through your entire medical history, look at previous lab tests, track your test values over time, or follow up with you regarding results of tests?

That is why it's essential that keep you track of your own health information. Particularly, as a thyroid patient, with hypothyroidism, hyperthyroidism, or thyroid cancer, where your condition is managed by TSH blood tests and laboratory information, you need to be on top of your test results and information.

Many thyroid patients are told that thyroid test results are "normal." "Normal" is not specific enough information upon which to take charge of your own health. Always ask for your exact numbers and the lab's normal ranges. Better yet, ask for a photocopy of the test results page, so you can keep it in your own file.

If after specifically requesting the numbers, your doctor refuses to tell you, insisting "it's normal," or "you don't need to know the numbers," or "leave the doctoring to me," this is a major warning sign that you need another doctor. There is absolutely no valid reason for a doctor to refuse to share your lab results. According to the American College of Physicians' Code of Ethics, ethically and legally, you are entitled to the information in your records. So, if the doctor refuses, then it's due to ego or an assumption that you deserve no role in your own health care. Both are good reasons to look for another doctor.

David Elfstrom, in his award-winning article, How to Talk to Doctors, suggests that a very important part of effectively dealing with doctors is to keep a medical diary of all significant health?related events. This is important advice. Keeping a health diary between appointments can help you get the most out of appointments, and keep your health information organized.

Ultimately, how you do it doesn't matter…but consistency and thoroughness is key. The main concern is keeping track of appointments, copies of test results, and other pertinent information, including:

  • Doctor information: Include the name, address, phone, fax, and email address for every doctor you see, even periodically. Keep track of receptionists' names. And also store directions to offices you don't visit frequently.
  • Pharmacy information: Include the prescription numbers and number of refills available for all current prescriptions, plus phone numbers for your pharmacy or pharmacies.
  • Lab/treatment facility information: Include the name, address, and phone number of any labs or treatment facilities (radiology labs, testing locations, physical therapists, etc.)
The diary should also keep track of your key health events, including illnesses, surgeries, and other pertinent information. A detailed health diary would include:
  • Dates of visits to the doctor
  • Dates when you've received any injections, vaccinations, or special treatments
  • Dates and locations of diagnostic procedures (TSH tests, x rays, MRI, bone scan)
  • Dates starting and stopping a medication, and dosage levels
  • Blood test results -- ask for a photocopy for your folder
  • Major emotional and physical stresses
  • Specific and unusual health symptoms -- such as "today I felt cold, and had a rapid pulse of 98," or "today, I was so tired I went to bed two hours early"
Internist, women's health expert and patients' rights champion Marie Savard, M.D. believes that keeping your own health records may actually save your life. Says Dr. Savard:
"I was first a nurse and then a family doctor for the past thirty years, witnessing tremendous changes in our health care system. We have gone from the trusted, all-knowing Marcus Welby, M.D. to the alphabet soup of PCP's and HMO's. And as a result of years of experience as a medical expert witness in malpractice cases, I have seen countless mistakes, often leading to death that would not have happened if people only knew how to take charge of their health and their health care."
Dr. Savard has two new books that address these issues. How to Save Your Own Life talks about how important it is to keep track of your own health information, and provides in-depth information on how to interpret various blood tests and results of medical testing.

The Savard Health Record focuses on keeping track of that information for doctor and hospital visits. The Health Record, which is produced as a 3-ring binder, provides a format to document your health information, plus your family's information.. From thyroid panel results to immunization records to documenting prescriptions, forms, charts, pockets and envelopes keep this critical information highly organized.

In an interview with Mary Shomon, Dr. Savard has said that she feels thyroid patients in particular need to be keeping track of their own health information. Says Dr. Savard:

"After twenty years of an internal medicine practice and interest in women's health, I have experienced countless women and incredible stories about how their thyroid disease was missed, inadequately treated, denied, etc."
Dr. Savard offered the following specific examples of how essential it is for thyroid patients to manage their own health information.

A 30 something year old affluent woman going through years of infertility treatment. When I saw her for a physical exam and ordered comprehensive blood work -- which always includes the relatively inexpensive TSH test -- her TSH was extremely high. Needless to say, with treatment she was quickly able to get pregnant and now has four children. She spent tons of money and time and worry in the process. A quick review of her medical records and all previous blood tests would have shown me that she never previously had this simple basic test despite her infertility. Everyone just assumed I guess that it was done by someone else…but no one checked. Unfortunately she did not use my system and no treating doctor ever asked for all her old records. Had she used the Savard Health Record she would have collected all her old tests, organized and stored the information, and presented it to each doctor for review. She could have researched her infertility as well and noted she never had her thyroid checked.

A 40 something year old woman changed insurance and came for a physical. I detected a significant thyroid mass. She assured me that a complete work up three years earlier showed it was a benign goiter. I insisted on getting all the previous tests and discovered she only had a thryoid scan and a T4 test. She was ultimately diagnosed with medullary carcinoma of the thyroid. Had she used my system, I could have immediately pointed out that she never had a needle aspirate of the mass, that her family history was of concern (if she filled out a family history tree, a history of abnormal glandular problems were evident) and that she never had a calcitonin level (hers was extemely high).

A 30-something woman who didn't tell her obstetrician that she was taking Synthroid for the past ten years. She needed an adjustment, an increase, in her thyroid dose as your web site would have suggested, during her pregnancy but didn't know about it until the third trimester. Had she carried her Health Record to her OB visit and showed her doctor her past history and all her current medications, the TSH could have been checked sooner and medications adjusted.

Many women I have treated in the past did not always feel well with straight Synthroid, but did better with combination of T3 and T4. (Armour thyroid sometimes works better for people). By keeping their own lifetime chronology of medication, doses, reasons to start and stop, this pattern could be more readily detected.

Many family doctors do not seem to understand that it is the TSH which is most sensitive and reliable to follow the thyroid dose and response to therapy. Patients can learn to track their own TSH and thyroid dose by using the test results at a glance form in the back of the medical record section.

Patients on longstanding thyroid, especially if on suppressive (high) doses for previous thyroid cancer, should have their bone density scans done periodically and take preventive measures such as calcium, exercise, etc. Patients can easily follow their own bone density studies and remind doctors when they may need them.
Obviously, it's critical that thyroid patients - and frankly, everyone - keep track of their health information. It's an important part of managing our own health - and dealing with the health care system - in the twenty-first century.

For More Information, Input and Support

  • For more information on Marie Savard's books - More detailed information on The Savard Health Record: A Six Step System for Managing Your Healthcare, and How to Save Your Own Life: Dr. Savard's Nine Steps to Getting the Healthcare You Really Need
  • Dr. Savard's Web Site -- Featuring Information on Dr. Savard's signings and chats online.

Sticking Out Our Necks and this website are © Copyright Mary Shomon, 1997-2003. All rights reserved. Mary Shomon, Editor/Webmaster
All information is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. You should seek prompt medical care for any specific health issues and consult your physician or health practitioner before starting a new treatment program. Please see our full disclaimer.