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Hiya. 70, live in Portland w Kaiser Permanente Med Adv. They don’t have Amyloidosis Dept, but OHSU & Providence does. PCP handling ordering blood/urine tests and Echocardiogram then appt w Cardiologist
Here are the Mayo Clinic Typing Results
Liquid chromatography tandem mass spectrometry (LC MS/MS) was performed on peptides extracted from Congo red-
positive, microdissected areas of the paraffin-embedded specimen.
LC MS/MS detected a peptide profile consistent with ATTR (transthyretin)-type… read more

April 23
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MyAmyloidosisTeam

Great question, and it's clear you're reading your results carefully — that's really important! The short answer is: the results are strongly suggestive of wild-type (non-hereditary) ATTR amyloidosis, but they are not 100% conclusive on their own.

Here's why TTR gene sequencing still matters
- Mass spectrometry is very Show Full Answer

Great question, and it's clear you're reading your results carefully — that's really important! The short answer is: the results are strongly suggestive of wild-type (non-hereditary) ATTR amyloidosis, but they are not 100% conclusive on their own.

Here's why TTR gene sequencing still matters:
- Mass spectrometry is very good at identifying the *type* of amyloid protein (ATTR in your case)
- However, it cannot detect every possible TTR gene mutation
- Only TTR gene sequencing (a blood test) can definitively rule out the hereditary form This distinction is important for a few reasons:

- Treatment decisions — some therapies are approved specifically for one form or the other
- Family implications — if hereditary, your children would each have a 50% chance of carrying the gene mutation
- Disease progression — knowing your exact variant helps predict how the condition may develop

Given your age (70) and the mass spec findings, wild-type is the most likely diagnosis. But since the Mayo report itself recommends TTR gene sequencing if hereditary amyloidosis is clinically suspected, it's absolutely worth discussing this with your cardiologist at your upcoming appointment.

Asking for a referral to OHSU or Providence's amyloidosis specialists alongside genetic counseling would be a very reasonable next step to raise with your PCP.

April 23

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