DIAGNOSED WITH HEART FAILURE AND
​​​​​​​EXPERIENCING UNRESOLVED SYMPTOMS?

TALK TO YOUR

DOCTOR

And learn more about a rare, underrecognised,
and underdiagnosed condition known as
ATTR-CM.

TALKING TO YOUR DOCTOR

It is important to talk to your doctor about the symptoms you are experiencing. They could be caused by something more serious than you realise, like transthyretin amyloid cardiomyopathy (ATTR-CM).

Download a ready-to-use Doctor Discussion Guide here.

WHAT TO BRING TO YOUR VISIT

Remember, Your Heart mATTRs! When it comes to ATTR-CM it is all about being proactive. While overall awareness of ATTR-CM is low, advocating for yourself or a loved one with the disease and asking your doctor questions can help you get many of the answers you need.
List of questions:

ATTR-CM can impact each patient differently, and your family, work, and social needs may differ. Be open about your questions and concerns.
Family medical history:

ATTR-CM can be hereditary. To the best of your ability, make note of any heart-related issues associated with your relatives on either side of your family.
Your medical history, records, and test results:

You may have already seen several doctors to understand why you are feeling discomfort. If you’ve had any tests like an electrocardiogram (ECG) or echocardiogram (ECHO), sharing the results with your cardiologist can help. Previous heart surgeries may also prohibit certain types of testing for ATTR-CM, so be sure to note if you’ve had any procedures or device implantations.
Signs and symptoms:

Let your doctor know if you have heart failure and any of these signs, symptoms, or conditions:

  • Heart failure with preserved ejection fraction (HFpEF)
  • Fatigue
  • Shortness of breath
  • Swelling (oedema) in the legs and feet
  • Irregular heartbeat (cardiac arrhythmia)
  • Heart and blood pressure medicines make you feel worse
  • Diagnosed with carpal tunnel syndrome in both wrists
  • Hand pain, numbness, or tingling in your fingers
  • Pain or numbness in your lower back or legs, which may be caused by lumbar spinal stenosis, or narrowing of the lower part of the spine
  • Atraumatic biceps tendon rupture
  • Gastrointestinal issues, such as nausea, diarrhoea, or constipation
  • Knee or hip replacement
  • Unexplained weight loss
  • Lightheadedness when you stand up
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Let your doctor know if you have heart failure and any of these signs, symptoms, or conditions:

You may consider asking some of the following questions:

Based on my symptoms, medical history, and family history, do you think ATTR-CM could be the cause of my heart failure?

Do I need additional tests to confirm my diagnosis and will the results of my test impact my treatment plan?

How quickly could this condition progress?

I understand this condition expresses itself in a variety of ways. Will additional specialists be part of my care team?

Are there any patient support or advocacy groups you recommend for emotional and mental support or additional information on ATTR-CM?

If ATTR-CM is determined to be the cause of my heart failure, what treatments are available?

Download a ready-to-use Doctor Discussion Guide here