Hemochromatosis

What is Hemochromatosis?

Hemochromatosis is a condition where the body takes in too much iron from food. Normally, the body absorbs only the amount of iron it needs. With this condition, extra iron builds up in the blood and organs, such as the liver, heart, and pancreas. Over time, too much iron can cause damage to these organs.

What Causes It?

Genetic (inherited): The most common type is passed down through families.
Secondary causes: Some people may develop iron overload from repeated blood transfusions, certain blood disorders, or liver disease.

How Is It Treated?

Phlebotomy (blood removal): The main treatment is removing blood regularly, similar to donating blood. This lowers iron levels.
Iron chelation therapy: Some patients may need medication to remove iron if they cannot have blood removed.
Lifestyle changes: Avoiding alcohol, iron supplements, and vitamin C supplements (which increase iron absorption).

How to Reduce Symptoms

Eat a healthy diet without extra iron or raw seafood.
Avoid alcohol to protect the liver.
Do not take iron or vitamin C supplements unless ordered by your doctor.
Drink plenty of water and stay active to support overall health.

How to Prevent Exacerbations (flare-ups or worsening)

Keep all blood removal (phlebotomy) appointments.
Follow your doctor’s advice about diet.
Have regular lab tests to check iron levels and organ health.
Limit alcohol and avoid uncooked shellfish (which can cause serious infections in people with too much iron).

Risk Factors and Complications

If untreated, too much iron can cause:

Liver disease (cirrhosis, liver cancer)
Diabetes
Heart problems (irregular heartbeat, heart failure)
Arthritis (joint pain and stiffness)
Hormone problems (such as early menopause or low testosterone)

When to Call the Home Health Nurse or Doctor

Call your nurse or doctor if you notice:

New or worsening fatigue
Joint pain or stiffness
Skin color changes (bronze or gray)
Stomach pain or swelling
Trouble with blood sugar control
Missed or delayed phlebotomy treatments

When to Go to the Emergency Room

Call 911 or go to the ER if you have:

Severe chest pain or irregular heartbeat
Sudden shortness of breath
Vomiting blood or black stools (possible bleeding in the stomach or intestines)
Severe confusion or fainting

Key Points to Remember

Hemochromatosis is treatable if caught early.
Regular blood removal can prevent organ damage.
Following diet and lifestyle advice can protect your health.
Keep up with medical appointments and labs to stay safe.

PATIENT HOMEWORK/ASSESSMENT Hemochromatosis

Choose “True” or “False” for each statement.

True or False: Hemochromatosis means the body absorbs too much iron.
True or False: Hemochromatosis only affects the stomach and does not harm other organs.
True or False: Extra iron can damage the liver, heart, and pancreas.
True or False: Hemochromatosis can be inherited from family.
True or False: Blood removal (phlebotomy) is a main treatment for hemochromatosis.
True or False: Taking iron supplements helps patients with hemochromatosis get stronger.
True or False: Patients with hemochromatosis should avoid raw seafood.
True or False: Alcohol is safe for patients with hemochromatosis because it does not affect the liver.
True or False: If left untreated, hemochromatosis can lead to diabetes.
True or False: Regular lab tests are important to check iron levels and organ health.
True or False: Vitamin C can increase the amount of iron your body absorbs.
True or False: Phlebotomy is similar to donating blood.
True or False: Tiredness and joint pain can be symptoms of hemochromatosis.
True or False: Hemochromatosis can increase the risk of liver cancer.
True or False: Eating a healthy diet without extra iron is important for patients with this condition.
True or False: Missing blood removal appointments can make iron levels rise again.
True or False: You should call your nurse or doctor if your skin starts looking bronze or gray.
True or False: Severe chest pain or fainting means you should wait until your next doctor’s visit.
True or False: Early treatment can prevent organ damage in hemochromatosis.
True or False: Hemochromatosis can be controlled with treatment and healthy lifestyle changes.

ASSESSMENT of WELL-BEING INDIVIDUALIZED PATIENT HOMEWORK

Symptom Identification:

Have you noticed any new tiredness, joint pain, or skin color changes (like bronze or gray) that could mean your iron levels are too high?

Activity Impact / Safety:
2. Are you able to do your normal daily activities safely, or do you feel weak, dizzy, or short of breath when trying to be active?

Treatment Adherence:
3. Have you been able to keep up with your scheduled blood removal (phlebotomy) treatments and follow the diet your doctor recommended?

Preventive Measures:
4. What steps are you taking to avoid iron overload, such as not drinking alcohol, avoiding raw seafood, and skipping iron or vitamin C supplements unless prescribed?

Additional Information (labs):
5. Do you know when your next lab tests are scheduled to check your iron levels and how important it is to keep those appointments?