Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
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.
A MyAmyloidosisTeam Member asked a question πŸ’­
August 1
 · 
Be the first to react
A MyAmyloidosisTeam Member

I have ATTR-CM....I think they just call it TTR....I was so lucky to get an early diagnosis

August 6
A MyAmyloidosisTeam Member

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

@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!

August 5
MyAmyloidosisTeam

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

Related Questions

View All
A MyAmyloidosisTeam Member asked a question πŸ’­
Massachusetts

A MyAmyloidosisTeam Member asked a question πŸ’­
Vernon bc Canada

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In