How to Organize Your Thyroid Paperwork and Medical Records

Patient Expert

In today's complex world of healthcare, keeping thorough medical and health records is important to ensure the best possible outcomes. If you are a thyroid patient, what sorts of information should you save, and how can you best organize it? Here is a guide to creating your personal health record (PHR).

Assemble your information

The first step in putting together your personal health record is to get copies of your medical records from your family doctor, specialists, other healthcare providers, and hospitals. You will usually need to sign release forms permitting doctors and facilities to release your records and results, and you may have to pay a flat or per-page fee for copying of records. For X-rays or another imaging tests, consider asking for a CD with the exam images.

Going forward, to make it easy, ask for copies of your results when you go in for a test. Bring a self-addressed, stamped envelope with a signed and dated sticky note attached, listing the record you'd like, your name, and date of birth. If results can be provided electronically, be sure to submit your request, along with your email address and any required release forms.

Note: You have a legal right to copies of any test results, immunization records, and discharge instructions. Doctors and hospitals can, however, withhold their own notes on your care.

Information to include in your personal health record (PHR)

In creating your personal health record (PHR), you should assemble the following information:

  • Your name, address, telephone, fax, email address
  • Your emergency contacts — name, address, telephone
  • Your insurance information, including member ID, group number, copay amount, and contact numbers and email
  • For all doctors and healthcare providers — name, address, telephone, fax, email address, website
  • Your blood type
  • Your organ donor status
  • Your immunization records
  • Your history of past hospitalizations and surgeries
  • For women, a history of childbirth — this includes how many children you've had and any miscarriages, cesarean sections, or abortions.
  • A copy of your advance directive, including a living will and power of attorney
  • Your medical history, including past diagnosis
  • The results of blood, urine, saliva, and imaging tests, as well as routine tests such as blood pressure, Pap smears, mammograms, colonoscopy, PSA (prostate), X-rays, and bone density scans.
  • For every thyroid medication and other drug, include: the brand and generic name, why you’re taking it, dosage, and any special instructions, along with the name/number of the prescribing doctor.
  • For every supplement or over-the-counter medication — the supplement, the brand, the dosage, why you're taking it, and any special instructions

Your PHR should also keep track of your thyroid-specific information, including:

  • Your diagnoses, such as Hashimoto's or Graves' disease, hyperthyroidism or hyperthyroidism, or thyroid cancer
  • Thyroid test results, such as thyroid stimulating hormone (TSH), T4/free T4, T3/free T3, thyroid peroxidase antibodies (TPO), thyroid stimulating immunoglobulins (TSI), reverse T3, thyroglobulin, and others. Also, related tests such as ferritin, leptin, fasting glucose, cholesterol levels. (Be sure you have reference ranges.)
  • Thyroid imaging results for tests including ultrasound, computed tomography (CT) scans, magnetic resonance imaging (MRI), and positron emission tomography (PET) scans.
  • Other test results, such as fine needle aspiration biopsy, radioiodine uptake (RAI-U).

Other items for your health record

There is other information — often in a paper form — that you should consider keeping as part of your health record. These include:

  • Insurance information, such as receipts, claims, and payment information — Experts recommend keeping them for up to seven years.
  • Hospital discharge instructions
  • Pharmacy printouts that accompanied prescribed medications
  • Doctor visit summaries and notes
  • Medical bills and insurance claims
  • Receipts for medical payments and out-of-pocket expenses

Keep a health journal

You may also find it helpful to keep a health journal. A health journal has daily or regular entries to track symptoms, emotions, food intake, exercise, sleep, water intake, and other factors. This can be done with paper and pen, using a printed book such as the MemoryMinder Personal Health Journal. You can also use a calendar or notepad program on your smartphone, or a word processing program.

Paper or electronic storage?

There are two key ways to store your personal health record information: paper or electronic.

Paper storage includes methods such as notebooks, binders, or file folders. For paper records, you should also have at least one copy at home (ideally, in a fireproof safe), and one copy stored with someone you trust. You can also keep a copy in your car, and a safe deposit box.

Electronic storage includes spreadsheets, word processing programs, and scans of paper documents. Electronic programs/apps have benefits in that most offer email or text alerts and reminders, and some interact with devices such as FitBits, sleep monitors, and blood glucose meters.

PHR programs/apps

Another option is to use a PHR program/app for desktop, phone, and tablet. The benefit of these programs is that most can link with hospitals, doctors' offices, labs, health insurers, and pharmacies. Two popular free PHR management programs/apps are Microsoft HealthVault and WebMD Health Manager. CareSync has a free basic version as well as a fee-based upgraded version. Many health plans and health maintenance organizations (HMOs) also have a PHR program.

An important note: If you use any online tools, be sure to record (and share with a backup contact) the log-ins and passwords.

Always carry with you in your wallet or purse

There is some key information you should always have with you in your wallet or purse:

  • Emergency contact information
  • The name and phone number of your primary doctor
  • Your insurance card
  • Your organ donor card, if you have one
  • A medical ID card or summary

Medical ID emergency card/information

You should carry a medical ID card or summary with you in your wallet or purse. You can purchase a pre-printed card to fill out and carry or use a website to generate a medical ID card you can print. You should also create an “In Case of Emergency” (ICE) listing in your smartphone. Both your medical ID card/summary and ICE listing should include:

  • Your emergency contact person name and number
  • Your blood type
  • Your organ donor status
  • Any key conditions such as diabetes, epilepsy, or drug allergies
  • A list of medications you are currently taking
  • Other key information, such as whether you have a pacemaker or stent, or any artificial joints

See more helpful articles:

The Best Apps for Thyroid Patients

Becoming Your Own Thyroid Advocate

Is Your Thyroid in the Normal Range, But Not Optimal?