ATTR-CM in women
Fact-checked by Recognizing the signs of heart disease can be lifesaving, but for women, the symptoms may be subtler and harder to detect. The same can be true for transthyretin amyloid cardiomyopathy (ATTR-CM), where women may have less obvious symptoms and are diagnosed less often than men. Estimates suggest that women with ATTR-CM only made up about 17% of diagnosed ATTR-CM cases.
Learning how ATTR-CM may appear differently in women and why doctors may miss it can help you recognize the warning signs earlier and advocate for your care when needed.
How ATTR-CM may look different in women
ATTR-CM in women doesn’t always present the same way as it does in men. This may be due in part to the fact that women often have smaller hearts, thinner heart walls, and smaller chambers. A woman’s heart also pumps faster than a man’s, but it ejects less blood with each pump.
These slight differences in structure and function can lead to slightly different heart measurements on imaging tests and lower levels of certain heart injury markers in women with ATTR-CM, potentially making early signs easier to miss.
Because of this, recognizing ATTR-CM symptoms can be especially important. Many symptoms can mimic those in other forms of heart failure. These may include:
- shortness of breath during activity
- fatigue or low energy
- swelling in the legs or abdomen
- irregular heartbeat
- numbness or tingling in the hands or feet
Some people may also develop carpal tunnel syndrome in both wrists before heart symptoms appear.
Why ATTR-CM can be misdiagnosed in women
One of the biggest challenges with ATTR-CM diagnosis in women is that symptoms may overlap with other common health issues. Female ATTR-CM symptoms, such as fatigue or swelling, are also often dismissed or attributed to aging, menopause, or stress.
Another challenge is that most early research on ATTR-CM included mostly male participants. As a result, many diagnostic guidelines were developed based on patterns seen in men, and the thresholds used to detect the disease may not be sensitive enough to detect it in women.
Additionally, bias may persist among medical professionals who perceive ATTR-CM as a disease that only affects men. This can further contribute to delayed or missed diagnoses in women.
Questions to ask if you feel unheard
If you’re living with symptoms that don’t seem to have clear answers, it’s OK to ask more questions. Dialogue with your healthcare team is important, and asking questions doesn’t mean you’re challenging your doctor’s authority.
Here are a few questions you may consider raising at your next appointment:
- Could my symptoms be related to amyloidosis or ATTR-CM?
- Are there imaging tests that can help rule out other conditions?
- Would genetic testing help determine whether this condition runs in my family?
- Should I see a specialist who treats advanced heart disease or amyloidosis?
ATTR-CM is a progressive condition, which means it can continue to worsen over time if it isn’t recognized and treated. The longer it takes to receive a diagnosis, the higher the risk for serious complications down the line.
Treatment access and advocacy considerations
Unfortunately, ATTR-CM treatment gaps in women may begin before treatment even starts.
In one study, women lived with symptoms for about two years before being diagnosed, compared with only a few months for most men. This matters because the longer the disease goes unrecognized, the more it may affect heart function and overall health.
Speaking up about persistent symptoms and asking whether ATTR-CM testing is appropriate can also help ensure the condition is considered earlier in the diagnostic process.
How to build support and get the right care team
Living with a heart condition can take a physical and emotional toll, but with the right support, it can be easier.
You may benefit from seeing a heart specialist (cardiologist) with experience in amyloidosis, often at a specialized heart or amyloidosis center. These clinics offer coordinated care from several experts who understand the condition from different angles.
It can also help to bring a trusted friend or family member to appointments. They can help you take notes, ask questions, and keep track of next steps. Patient organizations and peer support groups can also play a valuable role in ATTR-CM advocacy.
These communities often share reliable information and practical tips that can help you feel more confident in navigating care and making informed choices.
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.
