Concerned about unresolved heart failure symptoms?

Prepare for your talk with your doctor

Learn more about a rare, under-recognized, and underdiagnosed condition known as Transthyretin Cardiac Amyloidosis (ATTR‑CM).

Use this short questionnaire to create your own customized guide to share with your doctor

01

Have you (or the person you’re researching for) ever been diagnosed with heart failure?

Yes

No

ATTR‑CM is a rare, underrecognized, and underdiagnosed cause of heart failure, so this response ends your session

While you or someone you’re researching for have not been diagnosed with heart failure, it is always important to talk to your doctor about your full medical condition, including any changes in your health you may have experienced. Advocating for yourself (or someone you’re researching for) and asking your doctor questions can help you get many answers that you need.

If you’re curious to learn more about this rare, underrecognized, and underdiagnosed condition, keep exploring the Your Heart’s Message site.

WHEN TO SUSPECT

02

Please share a little more information.

Age

18-49

50-60

61-70

Over 70

Ethnicity

Black/African American

Asian

Caucasian

Hispanic

Other/Prefer not to answer

Gender

Male

Female

Other

Family History

Click here if you (or the person you are researching for) have a family history of heart failure.

03

Please select any current or previous symptoms/conditions.

Fatigue (excessive tiredness)

Eye disorders (eg, glaucoma)

Tendon rupture (eg, biceps, Achilles tendon)

Shortness of breath

Irregular heartbeat (cardiac arrhythmia)

Stomach issues (eg, diarrhea, constipation, nausea, or feeling full quickly)

Carpal tunnel syndrome (numbness, tingling, or pain in fingers)

Pain or numbness in lower back/legs due to narrowing of lower spine (lumbar spinal stenosis)

Shoulder, hip, and/or knee pain

Swelling in lower legs (peripheral edema)

Decreased or strange tingling sensation/pain in toes/feet (peripheral neuropathy)

I (or the one I’m researching for) have not experienced any of these symptoms.

CREATE MY DISCUSSION GUIDE

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Your Discussion Guide may help make the next conversation with your cardiologist more productive.

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.

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By checking this box, I agree that I am 18 years of age or older.

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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.
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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 cardiac amyloidosis (ATTR‑CM).

Not interested in creating your own guide?

Download standard Guide

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Dempsey’s Heart Talk

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”It’s terribly important to work with somebody that understands cardiac amyloidosis.”
Watch Dempsey’s Story

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.

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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)
  • Fatigue
  • 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.

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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.

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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.

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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:

download standard guide

  • 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, how can I manage my disease?

Learn about a treatment option

FIND OUT MORE