What it is
The main types are AL amyloidosis (linked to abnormal plasma cells in the bone marrow), ATTR amyloidosis (inherited or age-related, often affecting the heart) and AA amyloidosis (linked to long-term inflammation).
Treatment depends on the type and aims to stop more amyloid forming and to support affected organs.
Common signs
- Tiredness, breathlessness and swollen ankles
- Numbness, tingling or pain in the hands and feet
- Foamy urine, weight loss
- Carpal tunnel syndrome, sometimes years before other symptoms
How it is usually diagnosed
- A biopsy of tissue stained to show amyloid
- Blood and urine tests for abnormal proteins
- Heart tests such as ECG, echocardiogram, cardiac MRI or a nuclear scan
- Genetic testing for inherited types
Records worth keeping
Keeping these together makes each appointment easier, especially when you see a new doctor:
- Biopsy and typing reports showing which kind of amyloid
- Heart scan and kidney test results over time
- Genetic test results, which may matter for relatives
- Letters from the specialist amyloidosis centre
Questions to ask your doctor
- Which type of amyloidosis do I have, and which organs are affected?
- What treatment do you recommend and what is its aim?
- Should my family be tested?
When to get help right away
Call 112 or go to the nearest emergency department if you have:
- Fainting, chest pain or severe breathlessness
- Passing very little urine with swelling
This page is general information. It is not a diagnosis and does not replace a doctor who knows your history. Medfold keeps your records organised; it does not interpret them.