Transthyretin amyloidosis (ATTR) is a condition where a normal protein in the body called transthyretin becomes unstable, forms clumps, and builds up in organs like the heart. Prognosis has improved with earlier diagnosis and new treatments, but outcomes can vary. Several factors can influence how the disease progresses.
There are several types of transthyretin amyloidosis. The type you have can affect your prognosis:
- Hereditary ATTR cardiomyopathy (hATTR-CM): This type is passed down through families and happens when a change in the transthyretin gene causes the protein to misfold and build up in the heart. The disease has a poor prognosis. Death usually occurs about 11 years after symptoms first start and about four years after you’ve finally been diagnosed with ATTR.
- Wild-type ATTR cardiomyopathy (wATTR-CM): This type is not inherited and usually develops later in life, more often in men. It mainly affects the heart but has also been linked to carpal tunnel syndrome, nerve pain, or back problems that may appear years before heart symptoms start. People with wild-type ATTR-CM usually survive about two to five years after their diagnosis.
- Transthyretin amyloid polyneuropathy (TTR-PN): This type is inherited and affects the nerves. You may need a cane in three to five years and a wheelchair in 5-10 years. Without treatment, as the condition worsens, death can occur.
The earlier you are diagnosed, the better your prognosis might be. People who are diagnosed earlier in their disease tend to live longer. This is because the disease is caught in an earlier stage and can be treated earlier, slowing the disease’s progression. A 2022 study found that median survival improved from about three years to more than five years when ATTR-CM is diagnosed earlier.
Because early diagnosis is so important to prognosis, doctors are now referring more people for ATTR testing, especially after cardiac magnetic resonance imaging (MRI) or bone scans raise concern. And so, more patients are now caught at stage 1 of the condition instead of later, more severe stages.
ATTR-CM can lead to heart failure, which is when the heart doesn’t pump as well as it should. ATTR-CM prognosis is different depending on whether you already have heart failure symptoms. People with more severe symptoms on the New York Heart Association scale, a scale that classifies stages of heart failure, tend to have worse outcomes.
- Heart rhythm problems: Issues like atrial fibrillation are common, especially in wild-type ATTR, and may increase the risk of stroke or heart failure complications.
- Heart valve problems: Worsening valve leaks can affect ATTR-CM prognosis. In a large study, people whose mitral or tricuspid valves leaked more for one or two years had a higher risk of death. Even small changes on follow-up echocardiograms were linked with worse survival. Another heart valve problem that can make ATTR-CM prognosis worse is severe aortic stenosis, a type of narrowing in the aortic valve. Research shows that having aortic stenosis and ATTR-CM raises the risk of health issues and death compared to ATTR-CM alone.
- Worsened kidney function: A drop in kidney function is common in people with ATTR-CM and can signal that the disease is getting worse. In a large 2025 study, people whose kidney function fell by more than 20% in one year had a 70% higher risk of death. This higher risk appeared across all types and stages of ATTR-CM.
The survival rate for untreated ATTR-CM is between two and six years. Treatment with Vyndamax (tafamidis), a capsule taken by mouth, has been shown to help survival rates, and other promising drugs are being studied.
Survival for ATTR-CM has been improving in recent years thanks to better awareness and earlier detection. In a large international registry of people with ATTR-CM, survival was noticeably higher among those who received medical treatment and were diagnosed earlier.
