Amyloid transthyretin (ATTR) amyloidosis is a type of amyloidosis, a rare disorder that occurs when there’s a buildup of amyloid proteins in your body. These proteins can build up in the blood vessels, bones, and major organs, leading to a wide range of complications.

While this complex condition isn’t curable, there are treatments that can help you manage it.

It may be difficult to diagnose and treat amyloidosis because of the different symptoms and causes. They can also mimic other conditions.

You can learn more about ATTR amyloidosis, including the causes and symptoms, and discuss treatment options with a doctor.

ATTR amyloidosis is related to the abnormal production and buildup of a type of amyloid called transthyretin (TTR). Having too much of this substance can lead to organ damage.

Your body is meant to have a natural amount of TTR, which is primarily made by the liver. When it enters the bloodstream, TTR helps transport thyroid hormones and vitamin A throughout the body.

While the exact causes of ATTR amyloidosis may vary, the condition is thought to have a strong genetic component that may run in families.

ATTR is one type of amyloidosis, but there are also subtypes of ATTR to consider.

Hereditary ATTR (hATTR or ARRTm)

Hereditary, or familial ATTR (hATTR or ATTRm), is a type that can run in families. While amyloidosis often affects the kidneys, this is rare with hATTR.

Acquired ATTR (ATTRwt)

The acquired ATTR is known as a wild-type ATTR.

Like other types of amyloidosis, ATTRwt affects the heart and may increase your risk of developing congestive heart failure. It is also considered underdiagnosed, so its prevalence isn’t well understood.

According to the Amyloidosis Foundation, ATTRwt is commonly associated with aging, but not necessarily with other neurological diseases such as dementia.

The symptoms of ATTR vary based on the subtype but may include:

With amyloidosis, you may also be more prone to heart disease, especially with wild-type ATTR. You might notice additional heart-related symptoms, such as:

  • There is chest pain.
  • A rapid heartbeat.
  • dizziness
  • swelling
  • The breath was very thin.

ATTR can be difficult to diagnose since many of its symptoms mimic other diseases.

If someone in your family has a history of ATTR amyloidosis, your doctor may want to test you for it. Your doctor may order genetic testing for you if you have any symptoms or personal health history.

According to the Amyloidosis Foundation, wild types of ATTR may be more difficult to detect at first because the symptoms are similar to congestive heart failure.

To confirm ATTRwt, your doctor may order a biopsy of heart tissues, along with protein analyses and gene sequencing of the sample. They might also order an echocardiogram, an imaging test of your heart.

If ATTR is suspected, your doctor will need to detect the presence of amyloids in your body.

One way of doing this is through a nuclear scintigraphy scan. This scan looks for TTR deposits in your bones. A blood test can also determine if there are deposits in the bloodstream.

While not always a cause, other co-occurring conditions (comorbidities) that may be seen with amyloidosis include:

There are two goals for ATTR amyloidosis treatment.

  • Limit TTR deposits to stop disease progression.
  • The condition on your body can have effects.

The treatment for ATTR amyloidosis can be different.

For example, since ATTRwt primarily affects the heart, treatments for the disease tend to focus on this area first. According to the Amyloidosis Foundation, your doctor may prescribe:

Tafamidis may also be used off-label to treat peripheral neuropathy in other forms of ATTR, though it is not yet approved by the Food and Drug Administration (FDA) as of 2022.

While the symptoms of ATTR often mimic those of heart disease, you may not be able to take certain medications typically used to treat congestive heart failure. In fact, these medications can be harmful. According to the Amyloidosis Foundation, these include:

A doctor may also recommend removing the affected organ that’s producing abnormal TTR. For ATTRwt, this may involve a heart transplant.

While a 2020 review indicates a decline in heart transplants for this subtype due to other available treatments, it may still be a preferred method for younger adults.

In hereditary cases, a liver transplant can help stop the buildup of TTR. A doctor may also consider genetic therapies for hATTR.

Once you start treatment, you will need to speak with your doctor at least every 6 to 12 months for follow-up. They will monitor your ATTR progression, as well as your body’s response to treatment.

While there’s no cure for ATTR amyloidosis, clinical trials are evolving, with possible new treatment advances on the horizon. You may consider talking with a doctor to see if a clinical trial is right for you.

There is no cure for ATTR. Symptom management can improve your quality of life, while treatment can help reduce disease progression.

Overall, all cases of ATTR amyloidosis are still considered serious. hATTR amyloidosis may have a better prognosis compared with other types of amyloidosis due to a slower progression.

If you get tested early, you can start treatments to manage your symptoms and improve your outlook.

Researchers are continuously learning more about this condition, so it’s important to stay in touch with your doctor about any new treatment options that may help.