Hello Stacy that's very good news your husbands PYP came back negative. However, as I understand it, the PYP scan is a tool to determine if there is the presence of a specific type of Amyloidosis in the heart. Bone marrow and fat pad biopsies are tools used to determine AL Amyloidosis (and possibly other types of Amyloidosis). AL Amyloidosis has all the symptoms your husband may be experiencing AND, can affect the heart as well. This is what my husband has. All the tests done MRI, PET Scans and other heart related scans have been negative for Amyloidosis specific to the heart. To be honest, I had never heard of the PYP scan until recently. When I asked our Hematologist who specializes in Amyloidosis about the PEP scan or a heart biopsy to confirm in my spouse has the heart related Amyloidosis (it was heart failure that brought him to the Hospital Emergency), she said one can have AL-Amyloidosis even if the PYP shows negative for the heart. If you husband has all the symptoms, I would press for bone marrow and fat pad biopsies. They will confirm the presence of AL Amyloidosis. I will continue to press my spouse's cardiologist to perform a PYP. The other tool for the heart is a particular biopsy which both our hematologist and cardiologist stated was too invasive for my husbands weak condition. I just want to be sure if there is a better way to treat his heart related issues, that he can get that treatment. Best wishes. Carl

Thank you for the advice. He has the fat pad biopsy scheduled for next week despite the specialist cardiologist poo-pooing the accuracy of the biopsy. In all of my research, I continue to see the fat pad biopsy noted as the definitive test. I will also have him request the red Congo stain test during his next colonoscopy.

Get the Fat Pad Biopsy. Also at your next colonoscopy have your GI doctor request a tissue biopsy for a Red Congo Stain (definitely will show Amyloidosis or not). It is a Gold Standard Pathology Test!

Thank you for the insightful answer. It is helpful to hear. The PYP scan would be perfect for your husband. It's a shot of an isotope and then a scan. They wait two hours and repeat it. If it lights up on the scan that shows the presence of the amyloid fibrals. I am thrilled my husband came back negative, but as I suspected and you have confirmed, it doesn't mean we're out of the woods. My husband is going to request the fat pad biopsy when he sees his cardiologist next week. Thank you for responding and my thoughts are with you and your husband!