Questions AboutAmyloidosis and Testing
Two clear paths — whether you have symptoms, or simply want to understand your risk. Choose the one that sounds like you.
I have symptoms but no known family history
You can speak with a healthcare provider about your symptoms even if you do not know of anyone in your family with amyloidosis. Family history may be incomplete, and wild-type ATTR is not inherited. Symptoms such as shortness of breath, swelling, fatigue, numbness, or tingling can have many causes. Ask your provider what may be causing them and whether further evaluation or a referral is appropriate.
“I have these symptoms and learned about amyloidosis. I do not know of anyone in my family who has it. Could we discuss the possible causes and whether I need further testing or a referral?”
I do not have symptoms and want to learn about testing
You can ask your healthcare provider or a genetic counselor about your personal and family history and whether genetic testing is appropriate. If a relative has a known TTR gene variant, share that information and ask about testing for the family variant. If you have no symptoms and no known family history, you can still request a discussion; testing is not routinely recommended for everyone, and eligibility, cost, and coverage can vary.
“I do not have symptoms, but I would like to understand my risk. Would genetic counseling or testing be appropriate for me, and what would it cost?”
Understand the difference between tests
TTR genetic testing looks for a gene variant associated with hereditary ATTR amyloidosis. Having a variant does not necessarily mean a person has the disease or will develop symptoms. An evaluation for amyloidosis looks for evidence of disease and may use different tests based on the individual's situation. A TTR genetic test does not detect every type of amyloidosis, including wild-type ATTR.
The foundation provides education and resources; qualified healthcare professionals advise on testing, diagnosis, and treatment. Seek emergency care for severe or urgent symptoms.
Trusted sources
External links provided for educational reference only. These organizations are not formal 3HF partners.
Educational information only. Heart & Heritage Health Foundation does not provide medical advice, diagnosis, or treatment. All testing and care decisions belong to you and qualified healthcare professionals who know your individual situation.