Receiving an HCM diagnosis

When you have unexplained or worsening symptoms, talking to your doctor is the most important — and sometimes the hardest — thing to do. In this section, you'll find some information about how HCM is diagnosed and what to do if you are diagnosed.

Tired? - Short of breath? - Rapid Heartbeat? - Chest pain? - Dizzy

Tracking your symptoms

Discussing unexplained symptoms with your doctor can be challenging, but it's a vital first step to get the help you need.

During your appointment, it's important to clearly describe your symptoms and how they impact your daily activities. Keeping a symptom diary can be incredibly helpful for tracking the frequency, intensity, and triggers of your symptoms, and ensure important details aren’t overlooked.

Additionally, sharing any relevant family medical history, particularly if it includes genetic conditions such as HCM, can provide crucial information for an accurate diagnosis and treatment plan.

A symptom tracker can help simplify this process by helping you to log your symptoms consistently. This makes it easier to discuss your experiences with your doctor and track any changes over time, ensuring nothing is missed during your evaluation.

Download your symptom tracker

How is HCM diagnosed?

HCM is usually diagnosed through a combination of your medical history, a physical examination, and specific tests.ⁱ

Your doctor may ask you to describe the symptoms you are experiencing and ask about your family history. It’s important to mention any family members who have heart issues or have experienced similar symptoms.ⁱⁱ

To diagnose HCM, your doctor will need to examine your heart and may perform several tests, including:ⁱⁱ

Electrocardiogram (ECG): This records the electrical activity of your heart, helping doctors identify any abnormalities in the heart’s rate or rhythm.
Echocardiogram (Echo): A heart ultrasound, this is the primary test for diagnosing HCM. It uses sound waves to take pictures of your heart, helping doctors to check if it is working properly.
Magnetic resonance imaging (MRI): If an echo doesn’t provide enough information, an MRI can offer a detailed image of the inside of your body and help doctors examine muscles and organs and other structures.
Genetic testing:If imaging tests show less thickening of the heart muscle walls, genetic testing may be done to check if HCM has been passed down to you by a family member.
Exercise test: In this test, the heart activity and symptoms are monitored while undergoing a controlled exercise regimen.

Have an appointment with your doctor?

Use this downloadable guide to have an informed discussion about HCM. It offers questions to ask your healthcare team about your symptoms, treatment options, and additional things you can do to help manage your condition and help you take an active role in your care.

Be prepared with questions

HCM and the genetic link

HCM is often inherited, meaning it can be passed down through families. It’s important to know if your HCM is genetic as it may affect the health of other family members. If one of your parents has HCM, there’s a 50% chance you might have it too.ⁱⁱⁱ

Here's why understanding the genetic nature of HCM matters:

Family history awareness*: Knowing your family history of HCM helps with diagnosis. Be aware of any relatives who passed away suddenly or unexpectedly before age 50, or if there's a known history of HCM in your family. Be sure to share this information with your doctor.
Informing family members: If you are diagnosed with HCM, it’s important to let your family know. They might also have the condition, and early detection can be crucial for their health. Your healthcare team may recommend screening for close relatives like parents, siblings, and children.ⁱ
The “hidden disease”: Remember that HCM can be referred to as a “hidden disease”. Even if family members show no symptoms, they could be carrying the gene for HCM without realizing it. Further testing can help identify those at risk and enable early intervention.

“I want to stop the progression so future generations don’t have to go through what me and my four brothers have gone through.” Todd and his family have been severely affected by HCM. He believes being proactive about identifying potential risk will empower others to make informed decisions about their future health.

*Cardiomyopathies are covered under the Genetic Non-Discrimination Act (GNA), which prevents discrimination based on genetic information. The Act makes it illegal for anyone, including employers or insurance coverage, or access to services.

How is HCM managed?

If you’re diagnosed with HCM, it’s important to discuss treatment options with your medical team. While HCM cannot usually be cured or prevented, there are treatment and surgical options that may help to control your symptoms.

Your doctor will work with you to decide on the best approach for you.^ii,iv You should also let your family members know about your diagnosis. Helping them understand the condition and the potential genetic link will enable them to make informed decisions about their health.

Getting the support you need

If you’ve discussed your symptoms with your doctor or healthcare team, but still feel that something isn’t right, consider speaking with them again.

It’s important important to clearly describe your symptoms and how they’re affecting your daily life. Using a symptom tracker can help you monitor changes and provide more detailed information to your doctor.

If you are looking for additional support, Canadian patient organizations are available to help and guide you through your journey.

Downloads

Download this infographic for all the key information you need to know about HCM

References:
ⁱ Cardiomyopathy UK. Hypertrophic Cardiomyopathy - How is HCM diagnosed. Available at: https://www.cardiomyopathy.org/about-cardiomyopathy/types-cardiomyopathy/hypertrophic-cardiomyopathy
ⁱⁱ NHS, (2023). Cardiomyopathy. Available at: https://www.nhs.uk/conditions/cardiomyopathy/#:~:text=In%20most%20cases%2C%20hypertrophic%20cardiomyopathy,childhood%20and%20in%20young%20athletes
ⁱⁱⁱ CDC (2024). About Hypertrophic Cardiomyopathy (HCM). Available at: https://www.cdc.gov/heart-disease-family-history/about/about-hypertrophic-cardiomyopathy-hcm
^iv Heart.org, (2022). Prevention and Treatment of Cardiomyopathy. Available at: https://www.heart.org/en/health-topics/cardiomyopathy/prevention-and-treatment-of-cardiomyopathy