How ATTR-CM affects the sense of taste and what to do about it

Photo shows woman tasting from a pot
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This less common symptom of ATTR-CM can affect your enjoyment of food, appetite, nutrition intake and overall quality of life.

A less common symptom of transthyretin amyloid cardiomyopathy (ATTR-CM) is the change in the perception of taste. This can occur as a result of nerve damage caused by amyloid deposits in the peripheral nervous system or as a side effect of ATTR-CM or heart failure medication. 

Taste changes may include a reduction in the ability to taste; the altering of certain flavors, making them bitter or metallic; or the complete loss of taste.

The consequences for people living with this symptom of ATTR-CM can be significant, affecting their enjoyment of food, appetite, nutrition intake and overall quality of life.

Why does taste change in ATTR-CM?

In ATTR-CM, the most common symptoms are related to cardiac function and are similar to the symptoms of progressive heart failure: shortness of breath; fatigue; wheezing or coughing; heart palpitations; irregular heart beat; swelling of the legs, feet and abdomen; and general physical weakness.

But the buildup of amyloid deposits may also affect the peripheral nervous system, affecting sensory and motor function.

Changes in taste can occur as a result of the progressive deterioration of nerves in the tongue or salivary glands. Treatments for ATTR-CM or heart failure can also be a factor: Beta-blockers are known to alter taste, and other medications can cause a dry mouth, reducing sensitivity to taste. 

How to manage changes in taste in ATTR-CM

It is important to find a way to maintain a nutritious diet, even if your ability to taste is reduced (known as hypogeusia) or if flavors are distorted or unpleasant (known as dysgeusia).

Rarely, you may experience a complete loss of taste (ageusia), which can significantly affect your appetite and reduce your enjoyment of eating.

If you lose interest in eating, you can experience weight loss, lower immunity, decreased energy levels and low mood or depression.

Below are some tips for managing changes in taste.

  • Play around with spices and different flavors to boost the taste of your meals.
  • Avoid caffeine, alcohol and smoking, which can worsen a dry mouth.
  • Choose food that is moist, has a pleasant texture and is easy to chew.
  • Work with a dietitian to create meals that are balanced and nutritious.
  • Ask your doctor if changes in your medication may help improve your taste perception.

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