5 Silent Signs of ATTR-CM You NEED to Know

ATTR-CM is a condition that has been gaining a lot of attention lately, and unfortunately, for all the wrong reasons.

Relatively unfamiliar to most people, ATTR-CM or Transthyretin Amyloid Cardiomyopathy is a life-threatening heart disease caused by the accumulation of misfolded proteins, also known as amyloid fibrils, in the heart muscle.

Over time, these deposits can stiffen the heart, affecting its ability to pump blood, and frequently leading to heart failure. In the Black community, given certain genetic variants, ATTR-CM may be seriously underdiagnosed. ATTR-CM also appears like other conditions, such as hypertension, exhaustion, and coronary artery disease.

It’s better to be safe than sorry. So with that in mind, let’s cover some of the most serious, yet silent, signs of this life-threatening condition you NEED to know…

1. Fatigue

This is more than just feeling tired. What we’re talking about is a persistent and inexplicable drop in activity levels. It’s typically marked by getting exhausted with minimal effort, especially after doing something as simple as climbing some stairs or going about domestic chores that aren’t usually too taxing.

Different from fatigue due to lack of sleep, ATTR-CM-related fatigue is all due to the heart. This happens because the heart is struggling to pump enough oxygen-rich blood. With other conditions, like high blood pressure or coronary artery disease, the fatigue can go away by managing the condition. With ATTR-CM, however, it’s different – relentless.

You may also notice accompanying symptoms such as swelling or shortness of breath.

If you suspect you may have fatigue due to ATTR-CM, don’t wait around to find out. Ask your doctor for a cardiac evaluation, whether an echocardiogram or NT-proBNP blood test, to assess your heart condition.

2. Swelling (Edema)

Swelling in the legs, ankles, or feet is common in ATTR-CM and will usually get worse as the day progresses. Oftentimes, it can feel like your affected areas are super heavy or tight, and may come with additional abdominal bloating. This happens because fluid is building up in your liver or abdomen.

When comparing this swelling to other conditions, it’s important to recognize the differences. When swelling from kidney disease occurs, there is usually a protein in the urine or even visible varicose veins that go along with it. If the swelling is due to high blood pressure, you may usually get better with diuretic medications.

Unfortunately, standard treatments for ATTR-CM only provide temporary relief for swelling and do not address the underlying cause. You will typically notice irregular heartbeats coming with it as well, such as atrial fibrillation, which is seen in as many as 60 percent of ATTR-CM patients.

As with many of the symptoms of ATTR-CM, do not simply assume that it will get better on its own. It’s important that you report the symptoms to your doctor as soon as possible. One test you can get is called a cardiac MRI or nuclear scintigraphy to detect amyloid deposits.

3. Shortness of Breath

If your shortness of breath is due to ATTR-CM, it usually comes with minimal exertion. You may walk just a short distance or even be resting, and feel it. Many times, it will worsen when you’re lying down, leading to difficult sleep.

Consider other conditions that may seem like ATTR-CM, but aren’t. With asthma, the shortness of breath comes in episodes and can be treated with inhalers. If the shortness of breath comes from coronary artery disease, there is typically chest pain. In the case of ATTR-CM, however, the shortness of breath is progressive and linked to heart failure.

This occurs because the heart’s walls stiffen, preventing them from filling up properly. Unfortunately, this condition is more prevalent in Black individuals due to genetic variants that increase the chance of misfolded proteins in the heart.

If this persists and there is no obvious respiratory cause, talk with a cardiologist. You can get advanced imaging and even genetic testing, which is critical for people of African descent.

4. Carpal Tunnel Syndrome

When you have carpal tunnel syndrome from ATTR-CM, the symptoms include pain, numbness, and tingling of the fingers. This will often happen before any heart issues from the condition, sometimes as many as 10 years prior, according to ATTR Amylodosis Revealed.

Unlike carpal tunnel from straining your hands, ATTR-CM carpal tunnel usually affects both hands and won’t simply improve with rest or splints. With diabetes and carpal tunnel, it’s usually because your blood sugar levels are high.

ATTR-CM carpal tunnel syndrome is unique, however, because it stems from amyloid deposits in wrist tendons, which leads to nerve compression. It’s also resistant to most normal treatments. In Black men over the age of 50, this is most certainly a red flag.

To address this, you can speak with your doctor about getting what’s called a technetium pyrophosphate scan. This will help detect cardiac amyloid before it becomes more of an issue.

5. Numbness/Tingling in Extremities

This uncomfortable sensation usually starts in the toes and progresses upward. You may also notice a burning pain or muscle weakness as it progresses.

Although these types of feelings are not uncommon with diabetic neuropathy, in the case of diabetes, it’s related to your A1C levels. Meanwhile, conditions like peripheral artery disease may cause numbness, but that will improve with rest. That numbness is usually accompanied by a weak pulse, as well. And finally, in the case of multiple sclerosis, neurological symptoms will also lead to vision changes or tremors.

The reason ATTR-CM leads to numbness is that amyloid deposits damage peripheral nerves, which causes polyneuropathy.

If you suspect ATTR-CM is responsible for your numbness and tingling, and you have heart symptoms accompanying it, consult your doctor. Tests for nerve conduction and certain genetic screens can help you get to the bottom of it.

Overall, by taking a nuanced, consistent approach to your symptoms, you can quickly rule out what your condition is and isn’t. In most cases, it will not be ATTR-CM, as the condition is quite rare. After all, only about three to four percent of Black Americans carry the mutation for the disease, and only a small portion of carriers actually end up with the condition.

That said, it’s always better to be safe than sorry. And the good news is, there are various effective medicines for ATTR-CM.

So keep an eye out! Don’t be afraid to speak to your doctor, and you’ll be well ahead of the health curve before you know it!