Questions to ask your doctor

Questions to ask your doctor

Being diagnosed with transthyretin amyloid cardiomyopathy (ATTR-CM) can feel overwhelming, so it is normal to have questions. Talking about your thoughts and concerns, and asking questions, will help you and your doctor decide on the care and treatment that best suits your needs and lifestyle.

“Many people want to know about their treatment options and ask questions on whether they should have it, what the potential side effects are, whether they can still travel etc.” – Moderator of online support group

To help you take an active role in your care during appointments, here are some questions that you may want to ask your doctor:

Understanding your condition

What type of amyloidosis do I have? And why is this important to know?
Why has my condition developed? Is ATTR-CM genetic?
Does my family need to be tested for ATTR-CM?
What parts of my body are affected by ATTR-CM, or is it only my heart?
How can ATTR-CM worsen over time?

Treatment and management

What treatment options would be most appropriate for me? And what are the possible benefits, side effects or risks of each option?
How would this treatment affect my life? E.g., would I need surgery, or how often would I need to take the medication?
How would this treatment help me? E.g., would it reduce my symptoms, or would it help my heart to work normally?
Are there any medications I should avoid taking?
What happens if my treatment does not work?
How will I know if my ATTR-CM is getting better with treatment? Will my condition be checked regularly?
Are there any clinical trials that I can take part in?

Living with ATTR-CM

Can I do anything else to help manage my ATTR-CM? E.g., are there any lifestyle changes I can make?
Do I need to adapt my diet?
Do I need to control how much I drink?
What new warning signs or symptoms should I consider serious and seek emergency care for?
What support is available for my physical and mental wellbeing?
How can I connect with other people living with ATTR-CM?
What is the best way to track my symptoms?
Are there any support groups I can contact?
Is there a patient support programme?

You can also download a printable version of these questions to take to your appointments by clicking below.

ATTR-CM support questions to ask your doctor

ATTR-CM support_questions to ask your doctorPDF (0.16 MB)

It may be helpful to bring a notebook or use your phone to note down the doctor’s answers during your appointment or bring a family member or friend to support you and remind you of questions you want to ask.

You can find out more about the types of doctors that may be involved in your care here.

To explore topics in other sections, click on the links below:

Living with ATTR-CM

Recognize symptoms, adjust your daily routines, and support your well-being.

Supporting someone with ATTR-CM

Define your role, build a network, look after yourself

Further support

Explore common questions, understand key terms, pronounce complex words

What is amyloïdose?

Understanding amyloidosis: Know your condition, understand your type, recognise your symptoms

References

1
Mended Hearts Europe. Transthyretin Amyloid Cardiomyopathy. Available at: www.mendedheartseurope.org/educate/transthyretin-amyloid-cardiomyopathy/ (Last accessed: March 2026).
2
CardioSmart, American College of Cardiology. Questions to Ask. Available at: www.cardiosmart.org/topics/cardiac-amyloidosis/questions-to-ask (Last accessed: March 2026).