ATTR-CM Affects Women, Too

If you look up transthyretin amyloid cardiomyopathy (ATTR-CM), you’ll read that the vast majority (an estimated 70% to 80%) of people living with this progressive heart condition are men.

But experts increasingly believe that women develop ATTR-CM more often than we realize.

“ATTR-CM is not only seen in men — we should also suspect it in women,” says cardiologist Andres Carmona Rubio, MD.

Dr. Rubio and cardiologist Amanda Vest, MBBS, explain why this condition may be overlooked in women — and what you can do to make sure you get the right diagnosis.

How it’s different for women

In many ways, ATTR-CM looks similar in women and men — but they may be easier to miss in women. There are several reasons why, including these.

Limited research on ATTR-CM in women

Women are underrepresented in all cardiology research, including studies on how common certain types of heart disease are. So, Dr. Vest says it’s likely that more women have ATTR-CM than the stats suggest.

And that problem can snowball. When study after study suggests men are more likely to have ATTR-CM, it makes enrolling women in clinical trials and academic research seem less important.

Over time, this trend can affect the standards doctors use to make diagnoses — and decide how well different treatments work. It also raises the possibility that the more we learn about ATTR-CM, the less we know about what it looks like in women and how best to treat it.

Differences in heart structure

One of the main signs of ATTR-CM is thickening of the heart wall. But Dr. Vest notes that thickening can be easier to miss in women because they tend to have smaller hearts and thinner heart walls.

That means early changes may be less obvious on imaging and may not meet the usual standards for diagnosis.

Diagnostic difficulties

Because ATTR-CM isn’t a common diagnosis for women, Dr. Carmona says cardiologists may blame changes they do see on something else, like high blood pressure. Sometimes, a diagnosis — like valvular disease, for example — is accurate, but only part of the story. Digging deeper would uncover that ATTR-CM is also in the mix.

Some women with ATTR-CM likely never get diagnosed. Others only get to the right answer once the condition has progressed far enough to be obvious. That’s a problem because the sooner you start treatment for ATTR-CM, the better your chances of a positive outcome.

How symptoms present

While the symptoms of ATTR-CM are usually the same regardless of biological sex, men and women sometimes experience those symptoms differently.

As Dr. Carmona puts it, “The symptoms in women can be atypical or more subtle— not what textbooks tell us to expect.” ATTR-CM often causes heart failure. And women with heart failure tend to have more pronounced symptoms than men at the same stage of the disease.

While their symptoms tend to be worse by comparison, women are also less likely to get checked out when they first start noticing heart failure symptoms. Dr. Vest explains that women sometimes dismiss their symptoms as normal signs of aging. Sometimes, they assume (or are told) that they’re just anxious, overtired or out of shape.

When to see a doctor

ATTR-CM symptoms can be subtle and, frankly, confusing. That’s why it’s important to ask questions and advocate for yourself and your heart health.

First things first: Always reach out to your provider if you’re noticing symptoms of heart failure, whether you think you have ATTR-CM or not.

“If you’re getting significantly short of breath and can’t do the things that you used to, you need to see a doctor,” Dr. Vest urges.

Other red flags include:

• Unexplained weight gain and bloating
• Coughing or wheezing that doesn’t go away
• Dizziness or passing out, especially when you stand up (orthostatic hypotension)
• Heart palpitations
• Unusual heart rhythms (arrhythmias)
• A high heart rate

Ask to be tested for ATTR-CM if you have these symptoms and have (or have a history of):

• Carpal tunnel in both wrists (bilateral)
• Narrowing of the space around the nerves in your lower back (lumbar spinal stenosis)
• Numbness or tingling in your arms and legs (peripheral neuropathy)
• A history of ruptured tendons in your biceps
• Difficulty moving a finger or thumb (trigger finger)

“These non-cardiac findings should raise the suspicion that it’s ATTR-CM, even when your heart looks normal in routine screenings,” Dr. Carmona stresses. But for that to happen, your cardiologist needs to make the connection between all these symptoms and what they may have been led to believe is a “male” condition.

That’s why it’s important to be a strong advocate for yourself and your loved ones.

“I’ve had people referred to me before because they asked their healthcare providers questions,” shares Dr. Carmona. “If you suspect you have ATTR-CM, you’ve got to get the right testing. Because if we don’t look for it, we’re not going to find it.”

It’s important to act early

It’s not always easy to speak up in a doctor’s office. But if you think ATTR-CM might be causing your heart failure symptoms, it’s well worth the effort.

“There are now three U.S. Food and Drug Administration [FDA]-approved therapies that we can pick from to treat people living with ATTR-CM,” Dr. Carmona reports. “And the earlier we treat, the better the results.”

Don’t assume the statistics tell the whole story. And don’t let them keep you from raising the question. Taking action and getting tested doesn’t just help you — it could help change a pattern of missed diagnoses in women.