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Many people living with amyloidosis wait months or even years to receive a diagnosis — in part because the condition can be difficult to identify. Symptoms of amyloidosis often overlap with those of other health conditions. Additionally, symptoms can vary widely from person to person.
Unfortunately, some types of amyloidosis can progress quickly, so early diagnosis and treatment are important for improving outcomes. It’s helpful to know that while most forms of amyloidosis do not have a cure, early treatment may help slow the condition’s progression and manage symptoms.
Because amyloidosis is rare, its symptoms can be easy to overlook or confuse with signs of other conditions. You may be surprised to learn that some signs of amyloidosis are also common in people without any other medical conditions. Keep reading to learn about some of the lesser-known symptoms that may be signs of amyloidosis.
In amyloidosis, the body produces abnormal proteins called amyloid proteins, which are misfolded (shaped incorrectly). These proteins clump together and deposit in various tissues throughout the body. Over time, these amyloid deposits build up and interfere with the normal function of affected organs, leading to progressive organ damage.
Different types of amyloidosis are caused by different abnormal proteins:
Different types of amyloidosis tend to affect different organs or systems.
If amyloid proteins build up in a small part of a single organ, it’s called localized amyloidosis. When deposits are found throughout an organ or in multiple organs, it’s known as systemic amyloidosis, which is generally more serious. Diagnosing systemic amyloidosis often requires a biopsy of an affected organ or a sample from abdominal fat tissue.
Your symptoms depend on which organs are involved. Commonly affected areas include:
Carpal tunnel syndrome is a condition that causes pain, numbness, and weakness in the hand and wrist. It’s very common — around 3 in every 1,000 people in the United States develop carpal tunnel syndrome each year. It’s often associated with repetitive movements that cause inflammation and put pressure on the median nerve, which is the main nerve in the hand. Electromyography (EMG) testing can help confirm carpal tunnel syndrome.
Because carpal tunnel syndrome is so common, it may not immediately raise concerns about amyloidosis. However, it can be an early symptom of systemic amyloidosis (when amyloid proteins affect multiple organs or tissues). Amyloid deposits can form in peripheral nerves (nerves outside the brain and spinal cord), causing carpal tunnel syndrome and other nerve-related symptoms — a condition known as peripheral neuropathy.
One study found that about 10 percent of people with unexplained carpal tunnel showed signs of amyloidosis. Another study found that people diagnosed with carpal tunnel syndrome were three times as likely to also have amyloidosis. When carpal tunnel syndrome is related to amyloidosis, symptoms often affect both hands or wrists, instead of just one.
Macroglossia — a swollen or enlarged tongue — is a known symptom of amyloidosis, although it’s relatively rare and typically appears in later stages of the condition. When it does occur, amyloidosis is one of the most common underlying causes.
Macroglossia can happen when amyloid proteins build up in the soft tissues of the tongue. This buildup can lead to visible and uncomfortable symptoms, including:
In the early stages, these symptoms may be mistaken for a canker sore or irritation from dental appliances. However, as the condition progresses, macroglossia may begin to interfere with speaking, eating, or even breathing.
Another lesser-known tongue-related symptom of amyloidosis is a reduced or lost sense of taste. While uncommon, this can happen if amyloid proteins affect the nerves that carry taste signals from your taste buds to your brain.
You may feel dizzy or have trouble keeping your balance if amyloid deposits affect the autonomic nervous system — the part of the peripheral nervous system that helps the body control automatic processes like blood pressure and heart rate.
When amyloidosis affects these nerves, it can make it harder for the body to regulate blood pressure. This can lead to orthostatic hypotension — a drop in blood pressure that happens when you change positions, such as moving from sitting to standing or from lying down to sitting up.
Orthostatic hypotension isn’t unique to amyloidosis. It can also happen in otherwise healthy people when they’re dehydrated or haven’t eaten enough. However, frequent dizziness when standing may be a sign of an underlying medical condition — including amyloidosis.
Changes in the appearance or texture of your nails can happen if amyloid proteins build up in the nail tissue. In some cases, nail changes may be one of the earliest visible signs of amyloidosis.
Systemic AL amyloidosis is the type most often associated with nail involvement.
Signs of amyloidosis-related nail changes may include:
Amyloid deposits in the skin can make blood vessels more fragile and prone to leaking. This can result in purpura — patches of skin discoloration caused by bleeding under the skin. These patches may appear purple, reddish, or dark brown, depending on your skin tone.
Purpura is most commonly seen around the eyes and eyelids, but it can also develop on other areas of the body. In people with systemic AL amyloidosis, about 25 percent may experience purpura or easy bruising.
When amyloidosis affects the kidneys, it can cause urine to appear unusually foamy or frothy. This can happen when kidney damage leads to protein leaking into the urine — a condition called proteinuria.
It’s important to know that foamy urine is often caused by more common kidney conditions and doesn’t always mean amyloidosis. However, if foamy urine happens regularly or comes with other symptoms (like swelling or fatigue), it’s a good idea to talk with a doctor.
Among the different types of amyloidosis, this symptom may be more common in people living with AA amyloidosis, which often involves the kidneys.
Edema — a buildup of fluid that causes swelling — often shows up in the feet and ankles. It can happen in people with heart failure related to cardiac amyloidosis.
When amyloid proteins damage the heart muscle, the heart may struggle to pump enough blood to meet the body’s needs. Over time, this can lead to fluid buildup and symptoms of heart failure, including swelling in the lower legs.
To evaluate for cardiac amyloidosis, a doctor may recommend heart imaging tests such as an echocardiogram or cardiac MRI. These tests can help detect changes in heart structure or function that are common with this condition.
If amyloid proteins deposit in the eye, they can cause vision changes, including eye floaters — the sensation of seeing small shapes, squiggly lines, or shadows moving in your field of vision. These symptoms are most often seen in people with AL amyloidosis or ATTR amyloidosis, and they’re rarely linked to AA amyloidosis.
If you experience floaters or other changes in your vision, it’s important to have an eye exam with an ophthalmologist, a specialist trained to look for signs of amyloid deposits in the eye.
Your digestive system is partly controlled by the autonomic nervous system described earlier. When AL amyloidosis or ATTR amyloidosis affects these nerves, it can interfere with bowel function — leading to episodes of constipation, diarrhea, or both.
Occasional changes in your bowel are common and usually not cause for concern. But persistent or worsening bowel issues may be a sign of an underlying health condition, such as systemic amyloidosis.
When amyloid deposits affect the nerves of the gastrointestinal tract, it can slow digestion and cause symptoms like bloating, excess gas, and early fullness. This can sometimes lead to a decreased appetite or unintentional weight loss.
Because up to 25 percent of healthy people regularly experience bloating, this symptom can be hard to connect to amyloidosis without other signs. Still, persistent or unexplained digestive symptoms should be discussed with a doctor.
When AL amyloidosis or ATTR amyloidosis affects the autonomic nervous system, it may lead to changes in sexual function. These changes can include:
Sexual health is an important part of well-being. If you notice changes, talk with a healthcare provider — they can help determine the cause and offer support or treatment options.
Amyloidosis symptoms often mimic those of more common conditions, so it’s important to be mindful of new or unexplained symptoms, especially if they appear together or persist over time.
If you notice changes such as swelling, nerve symptoms, digestive issues, or anything that feels “off” for your body, don’t hesitate to reach out to your healthcare provider. Even if amyloidosis isn’t the cause, these symptoms still deserve attention.
Early diagnosis can make a difference. Speaking up about new or changing symptoms is one way to advocate for your health — and to help your doctor consider all possibilities, including rare conditions like amyloidosis.
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