I have ATTR-CM....I think they just call it TTR....I was so lucky to get an early diagnosis
August 6
will need a few tests...a bit inconvenient, but the tests will show what you have....treatment works...at least it does for me.
August 3
@A MyAmyloidosisTeam Member What type of amyloidosis do you have? What stage? My husband is trying to decide whether to start chemo for his Stage 4 AL. I'm glad your treatment is working!
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A MyAmylo...
August 5
Figuring out which type of amyloidosis you have is a crucial step β it directly shapes which treatments will work best. Doctors typically use a combination of tests rather than relying on just one.
Here's a breakdown of the key tests used:
- Biopsy β A small tissue sample (often from belly fat, bone marrow, or an affected Show Full Answer
Figuring out which type of amyloidosis you have is a crucial step β it directly shapes which treatments will work best. Doctors typically use a combination of tests rather than relying on just one.
Here's a breakdown of the key tests used:
- Biopsy β A small tissue sample (often from belly fat, bone marrow, or an affected organ) is tested in a lab. Special stains and techniques like mass spectrometry help identify the exact amyloid protein type
- Blood and urine tests β These look for abnormal proteins, such as light chains (which point toward AL amyloidosis), and check how well your organs are functioning
- Genetic testing β A blood sample is checked for changes in the TTR gene. If a mutation is found, the diagnosis is hereditary ATTR (hATTR). If no mutation is found, it points to wild-type ATTR
- Nuclear imaging (PYP scan) β This scan helps distinguish ATTR amyloidosis from AL amyloidosis, particularly when the heart is involved
- Echocardiogram β Checks heart function and can reveal signs of amyloid buildup in the heart
- Family history review β Since hATTR is inherited, knowing if relatives have been diagnosed can guide testing decisions Each type has distinct markers:
- AL amyloidosis β Identified by the presence of abnormal light-chain proteins in blood or urine, plus a bone marrow biopsy to examine plasma cells
- ATTR amyloidosis β Confirmed through biopsy, PYP scan, and genetic testing to determine if it's hereditary (hATTR) or wild-type
- AA amyloidosis β Identified through biopsy with special protein analysis, usually in the context of long-term inflammation
It's worth noting that no single test confirms the type on its own β the full picture comes together from multiple results. Always discuss your test results with your care team so they can guide next steps.
August 1