The Symptoms and Treatment of Hemosiderosis

Pulmonary hemosiderosis is a lung disorder which causes extensive bleeding, or hemorrhage, inside of the lungs, leading to an abnormal buildup of iron. This buildup can cause anemia and lung scarring known as pulmonary fibrosis. Hemosiderosis can either be a primary disease of the lungs, or secondary to cardiovascular or systemic disease such as systemic lupus erythematosus. Primary disease is usually diagnosed during childhood.

Two doctors having a discussion about an x-ray of a human lung
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Primary hemosiderosis may be caused by:

  • Goodpasture Syndrome: A pulmonary hemorrhage and autoimmune disorder affecting the kidneys and lungs.
  • Heiner Syndrome: A hypersensitivity to cow’s milk.
  • Idiopathic Hemosiderosis: Pulmonary hemorrhage with no immune disease. The disorder may be associated with other disorders or have no known cause.

Goodpasture syndrome is usually seen in young adult males while Heiner syndrome is typically diagnosed in infancy. Idiopathic pulmonary hemosiderosis may occur in people of any age but is most commonly diagnosed in children between the ages of 1 and 7.


The main symptoms of pulmonary hemosiderosis include coughing up blood (hemoptysis), iron deficiency (anemia), and lung tissue changes. The symptoms may begin slowly or appear suddenly. If the condition develops slowly, symptoms such as chronic fatigue, a persistent cough, runny nose, wheezing, and delayed growth may occur. If your child has Heiner syndrome, you may notice recurrent middle ear infections, persistent cough, a chronic runny nose, and poor weight gain.


If your healthcare provider suspects hemosiderosis, they may order blood tests, stool cultures, urinalysis, and an analysis of the bloody sputum. These tests can help differentiate between primary hemosiderosis, Goodpasture syndrome, Heiner syndrome, and idiopathic disease, and secondary hemosiderosis. Blood tests will check for anemia and indicators of other conditions. High levels of immunoglobulin can indicate Heiner syndrome while circulating anti-GBM antibodies point to Goodpasture syndrome. Stool tests will look for blood in the stool, which can occur with hemosiderosis. A urinalysis will look for blood as well. If blood or protein is present, it can indicate either primary or secondary disease. A chest x-ray can also be a useful diagnostic tool.

Treatment Options

Hemosiderosis treatments focus on respiratory therapy, oxygen, immunosuppression, and blood transfusions to address severe anemia. If your child has Heiner syndrome, all milk and milk products should be removed from their diet. This alone may be enough to clear up any bleeding in their lungs. If hemosiderosis is due to another disorder, treating the underlying condition can reduce bleeding. Corticosteroids may help people whose only symptom is bleeding in their lungs, with no other determined causes or secondary disease. Immunosuppressive drugs can also be a treatment option. However, studies are still examining how effective they are long-term.

Should you, or your child, be diagnosed with hemosiderosis, you will most likely need to follow-up for continual care. It is likely that your healthcare provider will want to keep an eye on your oxygen saturation. as well as your lung and kidney function. Your healthcare provider might also request periodic blood tests and chest x-rays.

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  • Napchan, G. D. (2015). Hemosiderosis. Medscape.

By Mary Kugler, RN
Mary Kugler, RN, is a pediatric nurse whose specialty is caring for children with long-term or severe medical problems.