I have wtattr,I had carpal tunnel ,they did a biopsy at that time no invasive heart biopsy Joe

It is not necessary to do any invasive biopsy. In December 2023, I was the only non-physician on the panel of the American College of Pathologists meeting in Chicago to develop guidelines for doctors to follow when amyloidosis is suspected. I'm quite familiar with a wide range of biopsies that are done to diagnose amyloidosis. My comment was correct in that a 100% accurate and valid diagnosis of wtATTR or hATTR is routinely arrived at without any biopsies. It was in my case, and I personally know several other wtATTR-CM patients who never needed any tissue biopsy to diagnose their form of amyloidosis.

When amyloidosis is suspected and you happen to have carpal tunnel surgery or another surgery that yields a tissue sample, then of course Red Congo stain can be used to determine if there are any amyloid fibrils present. Fat pad, fine needle aspiration of tissue can also yield a diagnosis of the AL type of Amyloidosis with about an 80% reliability factor in the presence of suspected amyloidosis symptoms.

Thanks Sheldon, that is a great help. With a long wait expected for a full hospital diagnosis I shall, now forearmed, request a blood test, John.

Hello Sheldon and John, I was first diagnosed with AL amyloidosis in September 2021. In the following months I had some biopsies especially in the bone marrow and also elsewhere... all negative. It was finally a biopsy inside the heart in January 22 that confirmed that I had rather WATTR.

I never needed any biopsy yield a 100% accurate diagnosis of my wild-type amyloidosis. A PYP scan, a electrophoresis urine analysis, and my genetic testing were sufficient.

I don't agree with the My Amyloidosis Team post. It is not true or accurate. It may apply to just the AL form of amyloidosis, but it most certainly does not apply to wtATTR-CM or hATTR.