Symptoms and Diagnosis of NTM Lung Disease

What Are the Symptoms of NTM Lung Disease?

The symptoms and severity of NTM lung disease vary greatly from person to person. Some people with mild nodular bronchiectatic disease may have no symptoms at all. For most people, the symptoms of NTM lung disease are similar to many other lung conditions. Because many people infected with NTM are already living with a chronic lung disease, it can be a challenge to recognize the symptoms of NTM lung disease as something new and different.

The most noticeable symptom is a chronic cough, often one that produces mucus. As the disease progresses you may sometimes cough up blood.

Other general symptoms that may help distinguish NTM from other lung diseases are a deep fatigue, low grade fever, night sweats and unexplained loss of appetite and weight. You may also experience shortness of breath, chest pain and recurring respiratory infections despite taking medication to treat them.

When to See Your Doctor

You should consider asking your doctor about NTM if you are living with a chronic lung disease such as bronchiectasis or COPD, and your symptoms are getting worse or your treatment is not working as well as it used to. You should also talk to your doctor about the possibility that you might have NTM lung disease if you are otherwise healthy and develop a cough and fatigue that won’t go away.

Coughing up blood or severe shortness of breath is considered a medical emergency and you should seek help immediately.

How It's Diagnosed

Because the symptoms of NTM infection are similar to other lung diseases, getting a correct diagnosis is often delayed for months or even years. This can be frustrating for patients and lead to a worsening of the infection and progressive lung damage.

Download a fact sheet to help understand your treatment plan and goals.

Diagnosing NTM lung disease takes a series of steps, first to rule other possible causes for your illness and then to confirm that you are definitely infected with NTM. Your healthcare team will usually need to do three different types of assessments:

  • A clinical exam, where your doctor will ask about your medical history and do a physical exam that includes a test of your breathing ability. You should be prepared with information about your overall health, your symptoms and your home and work environments.
  • A chest X-ray or CT scan to look for nodules, cavities or other changes to your lung tissue and airways that would indicate NTM disease.
  • A lab culture to confirm that the infection is caused by NTM. This is usually done by collecting a sputum sample of fluid coughed up from your lungs. Because NTM is so common in the environment, sometimes a sample can contain bacteria that happen to be in your airways but not causing any infection. To reduce the chance of a false positive, your doctor will repeat the sputum test several times on different days. Other ways to collect material for a lab culture are with sputum induction and bronchoscopy. These procedures are often used if you have difficulty producing a good sputum sample.

It is important that your diagnosis include identification of which species of Mycobacterium is causing your infection, since that will affect your treatment options.

Development of this educational content was supported by a collaborative sponsorship from Insmed Incorporated.

Page last updated: June 7, 2024

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