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Generally speaking, once you've been worked up/tested for possible ATTR, how long before a diagnosis?

A MyAmyloidosisTeam Member asked a question 💭
Kenoza Lake, NY

Last week, my husband's new EP suggested he be worked up for ATTR. He has had a cascade of symptoms potentially indicative of the condition as far back as 2020, when he was first diagnosed with cervical spinal stenosis. Since that time, he was diagnosed with diabetes (which he manages entirely by diet), ejection fractions consistently at 45%, orthostatic hypotension, fatigue, night sweats, and in December 2025, an episode of extreme HBP with fluid in the lungs that led to a 5 day hospital stay… read more

April 14
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MyAmyloidosisTeam

How long does it typically take to get an ATTR diagnosis after testing begins?

The timeline for ATTR diagnosis can vary, but the testing process itself is relatively straightforward once your husband's doctor orders the appropriate tests. The workup typically includes imaging tests like echocardiograms, cardiac MRI, and Show Full Answer

How long does it typically take to get an ATTR diagnosis after testing begins?

The timeline for ATTR diagnosis can vary, but the testing process itself is relatively straightforward once your husband's doctor orders the appropriate tests. The workup typically includes imaging tests like echocardiograms, cardiac MRI, and nuclear imaging scans to detect amyloid deposits in the heart.

If amyloid proteins are detected, blood and urine tests help determine the specific type of amyloidosis. For ATTR specifically, genetic testing can identify whether it's the hereditary form - this is usually a simple blood test or saliva sample that's highly accurate.

The actual testing can often be completed within a few weeks, though scheduling and insurance approvals may affect timing. Results from individual tests typically come back within days to a couple of weeks. Your husband's symptoms - including spinal stenosis, orthostatic hypotension, night sweats, fatigue, and heart issues with reduced ejection fraction - do align with patterns seen in ATTR. The fact that his EP is pursuing this workup is encouraging, as early diagnosis and treatment can help slow disease progression before more serious damage occurs.

Many of these symptoms can be mistaken for other conditions, which is why ATTR often goes undiagnosed for some time. The key is that once testing begins, the process moves relatively quickly compared to the years some people wait before anyone suspects ATTR.

April 14

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