How ATTR-CM is monitored over time
Fact-checked by As a progressive heart disease, transthyretin amyloid cardiomyopathy (ATTR-CM) requires continuous monitoring over time.
ATTR-CM is a form of heart amyloidosis — conditions in which abnormal proteins accumulate in the heart. In ATTR-CM, the abnormal protein is transthyretin, which can cause damage that ultimately leads to heart failure. There are treatments available that can hamper transthyretin buildup and slow disease progression.
After your ATTR-CM diagnosis, you’ll be routinely monitored by a multidisciplinary care team, with tests performed at least once or twice a year to track changes in heart health and adjust your treatment plan. Knowing what to expect from ATTR-CM monitoring will help you take a proactive role in disease management.
Why regular monitoring is essential to ATTR-CM care
ATTR-CM is a progressive disease, meaning that in its natural course, it gets worse over time. Even without symptoms changing, your heart can still be accruing irreversible damage.
Monitoring ATTR-CM over time is essential for doctors to understand how quickly your disease is progressing and whether any treatments are working to slow it. It will also help you better understand your long-term prognosis and plan for the future.
Doctors don’t rely on one single test to monitor your disease. They’ll look at results from imaging and blood tests, along with your symptoms, to determine next steps. It’s important to get all cardiac amyloidosis follow-up tests recommended by your doctor, as often as they recommend them.
Monitoring frequency can vary depending on several factors, but you’re likely to see your cardiologist at least every six months. The frequency of visits with other specialists on your care team may depend on your specific symptoms.
Common heart tests and imaging
Routine heart imaging is a cornerstone of monitoring for ATTR-CM. The most commonly used test is an echocardiogram — more simply known as a heart ultrasound — which evaluates various aspects of heart structure and function.
For many, echocardiograms are done about once a year, but they may sometimes be done more often. In between routine office visits, your doctor may equip you with a wearable device called a Holter monitor to track your heart’s electrical activity in daily life.
Increasingly, doctors are also using cardiac MRI to provide more detailed images of the heart and visualize amyloid buildup. This is a specialized test that is not yet used for every patient, and its frequency may depend on your clinical situation.
When you were first evaluated, you likely had an imaging test called a PYP scan. While this is a gold-standard test for an ATTR-CM diagnosis, its role in tracking heart amyloidosi is not established, and you may not need it routinely.
Blood tests
Blood tests to track changes in biomarkers of heart health are recommended every six months, or more often. With these tests, your doctor may measure:
- N-terminal pro-B-type natriuretic peptide (NT-proBNP), a marker of heart failure
- cardiac troponin (troponin T), a marker of heart injury
Increases in NT-proBNP and troponin T could indicate heart disease progression, while stabilizations or decreases could reflect a good treatment response.
Changes in blood flow and fluid balance caused by worsening heart failure can also cause kidney dysfunction. Your doctor may also regularly order blood and urine tests to track this.
Functional tests
Experts recommend that cardiologists perform routine clinical and functional tests for people with ATTR-CM at least every six months.
The six-minute walk distance (6MWD) test is a well-validated tool to assess physical function. It measures how far you can walk on a flat surface in six minutes — if the distance decreases over time, it could be a sign your heart failure is getting worse. Other exercise tests may also be done.
Your care team may also ask you to complete questionnaires to assess how your heart failure symptoms affect your daily functioning and quality of life.
Keeping track of everyday symptoms
Between appointments, it is important to monitor your ATTR-CM symptoms, particularly signs of worsening heart failure, such as:
- worsening shortness of breath, even with little or no activity
- chest pain, coughing, or wheezing
- confusion or trouble thinking
- swelling in the legs, ankles, or abdomen
- hospitalizations related to heart disease
You should promptly let your care team know if you experience these, as they may need to adjust your medications. New initiation or increased dosing of heart failure medications is another aspect of ATTR-CM progression tracking.
New or worsening neurological issues, eye problems, or other symptoms should also always be reported, as they could be signs of disease involvement in other organs.
It’s important to note that the underlying disease can still be progressing when your symptoms are stable. That’s why it’s important to undergo routine monitoring tests recommended by your doctor, even if you don’t feel like you are getting worse.
How routine monitoring helps guide your treatment
You, in collaboration with your care team, will use results from routine monitoring tests and clinical evaluations to determine how well your current treatment regimen is working and whether any changes are needed.
If tests show your disease is stable, you might not need to make any adjustments, but if things look like they’re getting worse, your doctor may recommend new medications and increased monitoring frequency. This is a dynamic process, so it is key to stay in frequent contact with your care providers at all stages of ATTR-CM.
Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
