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Why You Should Keep a Symptom Journal

New research shows it can reduce medical costs and even lengthen your life

With Leonardo Nissola MD, Aimee Daramus PsyD, and Brian Wind PhD

Unlike acute conditions such as appendicitis or a broken bone in which the doctor is in control, orders treatment, and the patient is restored to health, chronic diseases require a different management strategy.

You probably already know that endocrine disorders can be particularly tough to manage, but there’s one tool that can make things easier: A symptom journal. This practice can help you make sense of your diagnosis and treatment process.

For example, if you have hypothyroidism and experience severe fatigue, weight gain, and brain fog, keeping a journal of how your symptoms improve or change — in addition to any health and lifestyle behaviors you’ve adopted — can help you to better understand your body. Taking those notes with you to the doctor can also help your doctor understand exactly what's working or not working in your current treatment plan.

The more complicated a disorder, the more you’ll want to rely on your symptom journal. Linda Ruescher, master trainer for Stanford University's Chronic Disease Self-Management Program, explains, “Unlike acute conditions such as appendicitis or a broken bone in which the doctor is in control, orders treatment, and the patient is restored to health, chronic diseases require a different management strategy. In chronic disease, the doctor and patient are partners. The more engaged the patient is in the day-to-day management of the disease, the better the outcome.”

While it may seem a bit tedious or even unnecessary, the benefits are many. “The daily symptom journal raises patient awareness, helps the patient identify trends, and may reveal cause and effect," says Ruescher.

A symptom journal offers you: 

  • A sense of control and autonomy over your body and treatment plan. When your physical and/or mental symptoms become overwhelming, being able to better understand them can give you a sense of agency.
  • More effective doctor-patient interactions, as it enables you to present information in a straightforward manner to your health care provider. This is especially helpful when, from nervousness or anxiety, you forget to mention certain symptoms in the less than fifteen minutes that an average medical visit takes.
  • According to the American Academy of Family Physicians, those few minutes each day will help you save money: “Symptom diaries can create a more thorough history, which has the potential to limit unnecessary laboratory and radiographic testing."
  • Research has shown that keeping a symptom journal can even lengthen your life. A recent study found that patients living with heart failure saw longer survival when they embraced a patient journal.
     
  • Illuminate the things you need to do to take better care of yourself in the long-term as patterns emerge.

How to create a symptom journal

According to Aimee Daramus, PsyD, just about anything can work as a journal. Just make sure it works for you. If you hate writing by hand, for example, use an app or an Excel spreadsheet. “Journals can be kept in notebooks, on spreadsheets, or in symptom-tracking apps. Use the system you’ll be most faithful to,” Dr. Daramus says.

“Apps and spreadsheets make it easier to send to your treatment providers, but if a notebook or a chart on the fridge makes it more likely you’ll keep tracking symptoms, do that. You can make it as simple as possible, or you can use colored inks, stickers, or a reward system for taking your meds on time.”

There are plenty of apps for patients living with specific endocrine disorders, such as BoostThyroid for thyroid disorder patients or BG Monitor for diabetes. Ask your healthcare provider which ones they recommend or if they have a customized template you can use.

What to include in your symptom journal

According to Leonardo Nissola MD, you’ll want to first include your physical health information along with the date. Next, you’ll add specific details every day, including:

  • The date or time (if your symptoms change by the hour).
  • Your temperature.
  • Current medication. “If you're taking any medications, write down the name, doses and how often you're taking them,” Dr. Nissola says.
  • Include over-the-counter medications and any supplements.
  • Note the time you’re taking any medication as well — and any notes around how that can affect you.
  • Adverse reactions to medications.
  • Sleep quality.
  • Pain levels, on a zero to five scale. You should include your pain level each time you log an entry.
  • Moods and stress levels, with a rating from zero to five.
  • Stressful events that might be affecting your wellness.
  • Daily exercise.
  • Diet (this is especially important for diabetics).

One important note? “Keep treatments and symptoms on the same chart, so it’s easier to track how each treatment is affecting each symptom,” says Daramus.

If you are having new or sudden symptoms, Dr. Nissola says, note when the symptom started, whether it was something you’ve had before, how severe it was, and how much it affected you overall. Don’t hesitate to note symptoms that seem fairly harmless, such as a headache or a skin rash.

Why it’s important to include a section for mental health notes

According to Brian Wind PhD and Chief Clinical Officer at JourneyPure, you should include a mental health component each time you make an entry. You’ll also want to take note of any cognitive symptoms as well, such as brain fog, memory issues, or trouble concentrating. “Even though endocrine disorders are physical conditions, hormonal changes make people with endocrine disorders more susceptible to depression and anxiety,” he says.

In fact, endocrine disorder symptoms can masquerade as depression, anxiety, or mania. But what’s most important is that you inform your endocrinologist and/or therapist or psychiatrist of any symptoms you begin having. 

“A lot of people are reluctant to speak out about mental health, especially if they are embarrassed or ashamed of their illness,” says Dr. Wind, “As a result, even though depression is frequently co-occurring with many endocrine disorders, it often goes undiagnosed.”

You should also record your lifestyle habits, such as if you drink, smoke, or over-eat, especially as a way of managing pain or feelings of depression or anxiety. “These are all lifestyle factors that affect metabolism and hormone regulation. This is why it's so important to keep track of mental health symptoms as well as physical health,” Dr. Wind says.

How to get the most from your symptom journal

It’s best to record details in your symptom journal daily, especially if you take medication every day, are on a new medication, or are being treated for a new disorder or new issue related to your endocrine disorder.

As Daramus says, the point of a journal is to help you better understand your health — but you shouldn’t show up to a doctor’s appointment expecting your healthcare provider to read your entire journal. Rather, Daramus says, “A week or two before an appointment, the patient should review and summarize the journal entries as bullet points, no more than one page in length.”

Stay on top of your daily symptom journal — and build it into your routine. Think of it as part of your self-care ritual or a tool to better advocate for your health.

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