This guide is not intended to be used as a diagnostic tool and should not replace discussions with a patient’s healthcare provider. Any individual information you enter about yourself will only be viewed in the aggregate with other collected responses.
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 realize, like transthyretin amyloid cardiomyopathy (ATTR-CM).
Partnering with your doctor to get an accurate diagnosis is essential because treatment may be available.
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WHAT TO BRING TO YOUR VISIT
Remember, Your Heart mATTRs! When it comes to ATTR-CM, getting the message 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 cardiologist questions can help you get many of the answers you need.
Signs and symptoms:
Let your cardiologist know if you have heart failure and any of these signs, symptoms, or conditions:
- Heart failure with preserved ejection fraction (HFpEF)
- Shortness of breath
- Swelling (edema) 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
- Knee or hip replacement
- Gastrointestinal issues, such as nausea, diarrhea, or constipation
- Unexplained weight loss
- Lightheadedness when you stand up
While these signs and symptoms don't necessarily indicate that you have ATTR-CM or another condition, any one or combination should be mentioned to your cardiologist. The more you tell your doctor the better they can help you understand your condition.
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.
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.
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 you have experience diagnosing ATTR-CM, or can you recommend a local specialist?
Do I need additional tests to confirm my diagnosis? If so, whom at your office should I speak with, 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. Should I seek additional specialists to be a 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?