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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
March 20, 2025
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A MyAmyloidosisTeam Member

In simple terms as I understand it, amyloid protein is produced by the heart, enters the blood stream and over a period of time, starts to gum up your working parts. I find it strange, as does Sheldon, that you are of the opinion that your heart is unaffected.

March 20, 2025
A MyAmyloidosisTeam Member

JoeATTR: The Amyloidosis Team answer is very incorrect in at least one significant way. Attruby is approved for both wtATTR-CM and hATTR-CM. Joe, if it is true that you have zero amyloid fibrils in your heart ( I doubt that is correct....you may have very little or no cardiomyopathy).
Your doctors are unlikely to prescribe Attruby for you.

March 20, 2025 (edited)
A MyAmyloidosisTeam Member

John, you are quite welcome! Keep the faith and stay hopeful!

March 22, 2025
A MyAmyloidosisTeam Member

Thanks Sheldon, a miss-conception on my part. The NAC report on my tests, stated that the echo-cardiogram showed consistency with cardiac amyloid. Hence my assumption that all my problems originated from that source.

March 21, 2025
A MyAmyloidosisTeam Member

John, the amyloid is not produced in the heart. It is a result of broken-up Thyretin proteins that are produced 85% in the liver, up to 10% in the choroid plexus in the brain l, and up to 5% in your eyes. Not certain as to what you mean by,"where is the amyloid protein coming from if no cardiac involvement". Amyloid is not a produced protein, it is a result of misfolded proteins. There is no other strain, there is no such thing. Just dimers, oligomers, monomers, or other types of misfolded ttr protein that ends up being toxic when they form shapes that disrupt normal cell functions.

March 21, 2025

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