Key takeaways

  • Regular monitoring of hypertrophic cardiomyopathy (HCM) is important because the disease can progress over time, leading to more severe symptoms. Early detection of any changes in your heart will allow your doctor to adjust your treatment plan as needed.
  • HCM monitoring may involve tests such as echocardiograms, electrocardiograms, and cardiovascular MRIs. The specific combination and frequency of tests you receive will depend on factors like your age, your symptoms, and the severity of the disease.
  • Your HCM symptoms may change over time, even if your test results remain stable. It’s important to communicate any new or worsening symptoms to your cardiologist.

Hypertrophic cardiomyopathy (HCM) is a genetic heart condition that involves thickening of your heart muscle. That thickening can reduce the blood flow from your heart and cause a range of symptoms, such as shortness of breath, chest pain, fatigue, and dizziness.

HCM can remain stable for years. But in some cases, it can progress and may lead to more severe symptoms or complications. If you have HCM, regular monitoring can help your cardiologist (heart specialist) and other doctors identify changes in your condition earlier and make any necessary changes to your treatment plan.

Below, we answer some common questions about HCM monitoring.

HCM is a chronic (long-term) disease. It’s also progressive, which means the muscle thickening it causes may worsen over time. As HCM progresses, it can lead to more severe symptoms, reduced quality of life, and potentially serious complications.

Ongoing monitoring will allow your doctor to check your heart for any changes in structure or function and identify any new symptoms. The earlier your doctor notices any changes, the sooner they may be able to adjust your treatment plan to improve your outcome and quality of life.

Monitoring is also important because HCM is an inherited disease. If you have a family history of HCM but have not received a diagnosis, a doctor may recommend periodic monitoring. By regularly checking your heart, a doctor may be able to diagnose the condition early if you develop it.

When monitoring HCM, cardiologists may use a range of tests to examine your heart and measure the progression of the condition.

The combination of tests that your healthcare team recommends will depend on various factors, such as:

  • how long you’ve had HCM
  • your diagnosis (obstructive or nonobstructive HCM)
  • your symptoms
  • your treatment history
  • the results of previous tests

Tests that a doctor may order based on these factors include:

  • echocardiogram
  • exercise stress echocardiogram
  • cardiovascular MRI
  • cardiac CT scan
  • electrocardiogram (ECG)
  • angiography and invasive hemodynamic assessment
  • genetics and family screening

The frequency of HCM monitoring can vary based on factors such as:

  • whether you have a family history of HCM
  • how old you are
  • whether you have symptoms of HCM

In general, guidelines from the American College of Cardiology and the American Heart Association recommend that people with HCM undergo an electrocardiogram and an echocardiogram every 1 to 2 years.

For some people, a cardiovascular MRI every 3 to 5 years is also recommended.

Your cardiologist can recommend a schedule for follow-up appointments based on your specific situation.

Yes, it’s possible that your symptoms may change, even if your test results do not.

There is no single symptom that defines HCM. But if you have symptoms of HCM, you may experience sensations such as:

  • chest pain
  • shortness of breath
  • fatigue
  • heart palpitations (a feeling as if your heart is fluttering or skipping a beat)
  • lightheadedness

If you have obstructive HCM, you may start to experience symptoms in specific situations, such as when you’re dehydrated.

An obstruction may not always be noticeable during testing, so test results may look normal even when you have symptoms.

Doctors may recommend that you undergo tests while standing, while exercising, or while performing the Valsalva maneuver, which involves trying to blow air out while pinching your nose and keeping your mouth closed. These changes may make obstructions easier to identify on test results.

HCM can change over time, but its progression varies and will not look the same in every person. While the condition may progress in some people, it may remain stable for years in others.

Over time, increased thickening of the heart muscle may lead to new or more severe symptoms.

HCM can also lead to a wide range of cardiovascular complications, such as:

  • irregular heart rhythms, including atrial fibrillation and ventricular arrhythmias
  • congestive heart failure
  • endocarditis (infection of the heart valves)
  • embolism (a blood clot that blocks blood flow)
  • stroke
  • sudden cardiac death

Routine monitoring is essential to help your healthcare team notice any disease progression you may experience and make treatment changes to reduce the chances of complications.

Because HCM monitoring can be highly individualized, it’s important to understand your cardiologist’s plan for future monitoring of your condition.

Questions you may want to ask include:

  • How often should I receive monitoring?
  • What types of tests or procedures should I undergo during follow-up appointments, and how often?
  • What symptoms might I experience that would warrant a follow-up appointment?
  • Do I have any risk factors for long-term complications of HCM?
  • Should my family members undergo testing for HCM?

HCM is one of the most common inherited heart diseases. If you have HCM, doctors will monitor your heart for changes in structure and function.

You might undergo tests such as an echocardiogram, an electrocardiogram, and a cardiovascular MRI at regular intervals. These tests will help your healthcare team notice any HCM progression or complications and decide whether to make any changes to your treatment plan.

With ongoing monitoring and individualized management, many people with HCM live long, fulfilling lives.