How to talk to your doctor about ATTR-CM

Know your history

ATTR-CM can be hereditary or wild type. Hereditary ATTR-CM (hATTR) is caused by a mutation in the TTR gene and often appears earlier in life, sometimes as early as your 40s or 50s. Wild type ATTR-CM (wtATTR), on the other hand, typically affects older adults and is not linked to genetics.

If you have a family history of heart disease, neuropathy, or unexplained health issues, bring that information to your appointment. It may help your doctor decide whether genetic testing is appropriate.

Track your symptoms

Write down what you’re experiencing—such as fatigue, shortness of breath, or swelling in the legs—and when these symptoms occur. ATTR-CM symptoms often overlap with other conditions, so having a clear record can help your doctor spot patterns.

Learn more about the early signs and symptoms that may point to ATTR-CM.

Share your full medical background

Make sure your doctor knows about any other conditions you have, past surgeries, or medications you’re taking. ATTR-CM can coexist with other diseases, and a full picture of your health helps guide the right tests and referrals.

Questions to ask your doctor

When you’re ready to talk to your doctor, consider asking questions such as:

• Based on my symptoms and history, could I have ATTR-CM?
• Do you have experience diagnosing ATTR- CM, or can you refer me to a specialist?
• What tests do I need to confirm a diagnosis?
• Could my symptoms be caused by another condition?
• Are there support groups or resources you recommend?
• How quickly could this condition progress if untreated?
• What treatments are available, and how do they work?
• Should I see other specialists as part of my care team?

Getting a diagnosis: what to expect

If your doctor suspects ATTR-CM, they may recommend a series of tests to confirm the diagnosis. These could include blood or urine tests to detect abnormal proteins, imaging tests like echocardiograms to assess heart function, and genetic testing if hereditary ATTR-CM is a possibility. In some cases, a biopsy may be needed to confirm the presence of amyloid deposits in heart tissue.

These tests can help determine not only whether you have ATTR-CM, but also what type and how advanced it is. That information is critical for choosing the right treatment path and building a care team that may include cardiologists, genetic counselors, and amyloidosis specialists.

For more information, read how ATTR-CM is diagnosed.

After diagnosis: next steps and follow-up

Ask follow-up questions

Once diagnosed, your doctor can help you understand your condition and what it means for your health. You may need regular follow-up appointments and imaging or lab tests to monitor progression.

Here are some questions to consider asking as part of your care:

• How advanced is my ATTR-CM?
• Should I undergo genetic testing, and what does that mean for my family?
• How often should I have follow-up appointments or tests?
• What imaging or lab tests will be used to monitor my condition?

Explore treatment options

The goal of treatment is to help slow disease progression and help patients live longer.

To take an active role in your care, you may want to ask your doctor questions like:

• Are there doctors who specialize in ATTR- CM?
• What treatment options are available for ATTR-CM?
• What is the goal of treatment?
• Are there medications that can slow or stop progression?
• How will I know if treatment is working?
• What’s the long-term outlook with treatment?

Asking these questions can help you understand your care plan, set realistic expectations, and make informed decisions about your health.