As temperatures rise, many people experience fatigue and discomfort. However, for some, these symptoms may indicate a more serious condition: transthyretin amyloid cardiomyopathy (ATTR-CM). This rare heart disease is often underdiagnosed, especially in Black communities, due to overlapping symptoms with common ailments and a lack of awareness. Understanding the signs of ATTR-CM and advocating for early testing can be life-saving.
Why Summer Fatigue Hits Differently for People with Heart Issues
Fatigue during the summer isn’t uncommon—hot weather, dehydration, and outdoor activities can naturally drain anyone’s energy. But for individuals with heart conditions like ATTR-CM (transthyretin amyloid cardiomyopathy), this seasonal tiredness can signal something much more serious.
ATTR-CM is a progressive and often underdiagnosed form of heart failure caused by the buildup of misfolded transthyretin proteins in the heart. These proteins thicken and stiffen the heart muscle, making it harder for the heart to fill with and pump blood efficiently. The body, deprived of oxygen-rich blood, begins to slow down, leading to a specific type of unrelenting fatigue.
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What makes this “summer fatigue” different is that it’s not relieved by rest and is often accompanied by other subtle warning signs. The body may feel heavy, simple tasks become exhausting, and even walking across the room or standing in the sun can leave a person breathless or dizzy.
In hot, humid conditions, the body has to work harder to regulate its temperature, putting additional strain on an already struggling heart. For people living with undiagnosed ATTR-CM, this can push symptoms into crisis territory, and the signs are too often mistaken for simple aging, dehydration, or heat exhaustion, especially in older Black adults.
According to Rare Disease Advisor, Black men over 60 are especially at risk due to the hereditary form of ATTR-CM, which is linked to a mutation more common in people of West African descent.
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Recognizing the signs and advocating for a cardiac evaluation could mean the difference between prolonged suffering and life-extending treatment.
RELATED: What Black folks Need To Know About ATTR-CM
The Top 5 Signs It’s More Than Just Heat Exhaustion
So, how can you tell if your summer tiredness is normal or something more?
Here are five red flags that may indicate ATTR-CM:
- Persistent Fatigue
Unlike typical tiredness, this fatigue is deep and doesn’t go away with sleep. It affects daily tasks like cooking, showering, or walking to the mailbox—and it gets worse over time. - Shortness of Breath
If you’re finding it hard to breathe when climbing stairs, talking, or even lying down flat at night, it may indicate that fluid is backing up into your lungs, a sign of heart failure. - Swelling in the Legs, Ankles, or Abdomen
Known as edema, this swelling is caused by fluid retention due to the heart’s inability to pump blood effectively. Your shoes or pants may feel tighter than usual. - Irregular Heartbeat (Palpitations)
A fluttering, pounding, or racing sensation in your chest could signal an arrhythmia, which is common in ATTR-CM and may lead to fainting or stroke if left untreated. - Dizziness or Fainting
Feeling lightheaded, especially upon standing, could mean low blood pressure or reduced blood flow to the brain, a sign your heart is struggling to keep up.
If these symptoms are persistent, worsen in heat, or occur in someone over 60, especially a Black man or woman with a history of high blood pressure or carpal tunnel syndrome, they deserve immediate attention.
RELATED: 5 Silent Signs of ATTR-CM You NEED to Know
Understanding Swelling, Shortness of Breath, and Dizziness
These three symptoms often occur together in ATTR-CM, and each one tells a story about what’s happening inside the body:
- Swelling (Edema): As the heart becomes stiffer and weaker, fluid begins to accumulate in the legs, feet, and abdomen. Swelling may be worse in the evening or after long periods of sitting or standing. Tight socks, unexpected weight gain, or indentations on your legs are signs to watch.
- Shortness of Breath (Dyspnea): In ATTR-CM, excess fluid can build up in the lungs (a condition called pulmonary congestion), making it difficult to breathe during physical activity or while lying flat. You might find yourself propping up pillows at night or avoiding stairs altogether.
- Dizziness and Fainting: These occur when blood flow to the brain is reduced due to an irregular or weakened heartbeat. This symptom is particularly concerning, as it could be a sign of advanced cardiac involvement.
These symptoms are often misdiagnosed as aging, anemia, anxiety, or poor fitness, especially in women and Black patients, which delays proper care. If they persist or interfere with daily life, it’s time to ask for advanced cardiac testing.
RELATED: 5 Treatment Options For ATTR-CM
Why Women’s Symptoms Are Often Different (and Ignored)
While ATTR-CM is frequently associated with older men, women experience it too, but their symptoms are often different and overlooked.
Rather than the classic signs of swelling or chest pain, women may report:
- Extreme fatigue
- Tingling or burning in the hands or feet (neuropathy)
- Gastrointestinal problems (like nausea or constipation)
- Brain fog or mild memory issues
These “non-cardiac” symptoms often lead to dismissal or misdiagnosis, especially when women report them without visible swelling or severe shortness of breath. According to TTR Matters and the World Heart Federation, this pattern contributes to delayed diagnosis in women, sometimes for years.
Cultural and gendered biases also play a role. Black women, in particular, face a double burden: they are less likely to be referred to specialists, and more likely to be labeled “noncompliant” or “exaggerating” when discussing symptoms.
Awareness and advocacy are critical. If you’re a woman experiencing unexplained fatigue, gut issues, or nerve pain—especially with a family history of heart disease—bring this up at your next appointment and ask about ATTR-CM.
Getting Tested Early: The Benefits of Timely Detection
Catching ATTR-CM early can dramatically improve quality of life and long-term outcomes. The sooner it’s diagnosed, the sooner you can start treatments that may slow the disease and relieve symptoms.
Key diagnostic tools include:
- Echocardiogram: An ultrasound of the heart to assess function and wall thickness.
- Cardiac MRI: Provides detailed images of the heart to detect amyloid buildup.
- Nuclear imaging (PYP scan): A non-invasive test that can identify ATTR amyloidosis without the need for a biopsy.
- Genetic testing: Essential for identifying hereditary ATTR-CM, especially in families of African descent, where the V122I mutation is more common.
Getting tested early also opens doors to clinical trials, medications like tafamidis (Vyndamax), and support services that can help patients manage the disease.
If you’ve been struggling with persistent heart failure symptoms and not getting answers, ask specifically about ATTR-CM. Many doctors still aren’t familiar with this condition—it’s okay to be the one who brings it up.
Managing Symptoms While Waiting for Diagnosis
Waiting for a definitive diagnosis can be stressful, but there are ways to reduce discomfort and prevent symptom escalation during this period:
- Monitor Fluid Intake: Stay hydrated, but avoid overconsumption—especially in hot weather. Follow your doctor’s guidelines on how much water is appropriate.
- Elevate the Legs: If swelling is a problem, prop up your legs several times a day to help with fluid drainage.
- Follow a Low-Sodium Diet: Reducing salt can help lower blood pressure and decrease fluid retention. Try to avoid processed foods and opt for fresh fruits, vegetables, and lean proteins.
- Track Your Symptoms: Keep a journal of daily symptoms, changes in weight, medication side effects, and energy levels. This data will be helpful for your healthcare provider.
- Stay Cool: Avoid midday heat, use fans or cooling towels, and wear loose, breathable clothing to reduce cardiovascular strain during hot days.
These small steps can alleviate day-to-day discomfort while you wait for test results or specialist appointments.
What to Bring Up at Your Next Check-Up
During medical appointments, patients should proactively discuss:
- Symptom History: Detailing the onset, duration, and severity of symptoms provides valuable diagnostic clues.
- Family Medical History: Sharing information about relatives with heart conditions or amyloidosis can indicate hereditary risks.
- Previous Diagnoses: Informing the doctor about past diagnoses, such as carpal tunnel syndrome or neuropathy, may reveal related conditions.
- Medication Review: Discussing current medications helps identify potential contributors to symptoms.
Open communication with healthcare providers is essential for accurate diagnosis and effective treatment planning.
Recognizing the signs of ATTR-CM, especially during the summer months when symptoms may be mistaken for heat-related issues, is critical. Early detection and proactive management can significantly improve outcomes. Individuals experiencing persistent fatigue, swelling, or other concerning symptoms should consult their healthcare providers promptly to explore the possibility of underlying heart conditions like ATTR-CM.
