Haemochromatosis (Iron Overload Disorder) in Grand Rapids, Michigan

Haemochromatosis, also called iron overload disorder, is one of the most common hereditary conditions in the United States. It is especially common among people of Northern European descent, a significant part of the population in West Michigan and the Grand Rapids area.

In haemochromatosis, the body absorbs and stores too much iron from food. Over time, this excess iron builds up in major organs and can cause serious, sometimes life‑threatening health problems if not treated.

How Iron Normally Works in the Body

Iron is a vital mineral your body needs to:

  • Make hemoglobin, the protein in red blood cells that carries oxygen
  • Support muscle function and energy production
  • Maintain a healthy immune system

Iron from food is absorbed in the small intestine. The body has no natural way to get rid of large amounts of extra iron, so normal excess is stored safely in the liver and other tissues. Most people store about 1 gram or less of iron without any issues.

In hereditary haemochromatosis, the body absorbs far more iron than it needs. Iron stores can rise to 5 grams or more. This overload can damage:

  • Liver
  • Heart
  • Pancreas
  • Joints
  • Hormone‑producing glands

Why Haemochromatosis Matters in Grand Rapids

In Grand Rapids and across West Michigan:

  • There is a large population with European ancestry, where haemochromatosis is more common.
  • Chronic conditions linked to iron overload—such as heart disease, diabetes, and liver disease—are already major health concerns in Michigan.
  • Cold winters and reduced physical activity can worsen fatigue and joint pain, symptoms that may be mistaken for other problems and delay diagnosis.

Local healthcare systems like Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health all have primary care and specialist providers who can evaluate and manage haemochromatosis.

What Causes Haemochromatosis?

The HFE Gene and Inheritance

Most cases of hereditary haemochromatosis are caused by mutations in the HFE gene. It is a recessive genetic condition:

  • To develop the disease, a person usually must inherit two mutated HFE genes (one from each parent).
  • If a person inherits only one mutated gene, they are a carrier. Carriers usually do not develop iron overload but can pass the gene to their children.
  • About 1 in 7 people may be carriers of a mutated HFE gene.

If both parents are carriers:

  • Each child has a 25% (1 in 4) chance of inheriting both mutated genes and developing haemochromatosis.
  • Each child has a 50% (1 in 2) chance of being a carrier.

A simple blood test and genetic test can show whether someone carries or has mutations in the HFE gene.

Who Is at Risk?

Haemochromatosis can affect both men and women. However:

  • Men often develop symptoms earlier (typically between ages 30–50).
  • Women tend to develop symptoms later, often after menopause, because menstrual periods and pregnancy naturally reduce iron stores over time.

People at higher risk in the Grand Rapids area include those who:

  • Have a family history of haemochromatosis or unexplained liver disease
  • Are of Northern European descent
  • Have early‑onset arthritis, diabetes, or heart disease without a clear cause

Early Haemochromatosis Often Has No Symptoms

In the early stages, haemochromatosis may cause no symptoms at all. This makes it easy to miss, especially in a busy city like Grand Rapids where fatigue and stress are common for other reasons (work, commuting, winter blues, etc.).

Without testing, many people are not diagnosed until organ damage has already begun.

Symptoms of Haemochromatosis

As iron continues to build up, symptoms may gradually appear. These can vary from person to person and often resemble other conditions, which is why haemochromatosis is frequently overlooked.

Common symptoms include:

  • General symptoms

    • Weakness and fatigue
    • Low energy or lethargy
    • Unexplained weight loss

  • Joint and muscle symptoms

    • Joint pain, especially in the second and middle fingers of the hands
    • Stiffness or arthritis‑like pain in hands, wrists, knees, hips, or ankles

  • Abdominal and liver symptoms

    • Abdominal pain or discomfort (often in the upper right side)
    • Signs of liver dysfunction or liver disease
    • Enlarged liver (hepatomegaly)

  • Hormonal and sexual health symptoms

    • Reduced sex drive (low libido)
    • Erectile dysfunction (impotence) in men
    • Irregular menstrual periods or early menopause in women
    • Fertility problems

  • Skin and hair changes

    • Darkening of the skin (bronze or grayish tone)
    • Loss of body hair

Because these symptoms are so general, they can easily be mistaken for:

  • Depression or seasonal affective disorder (common during West Michigan winters)
  • “Normal aging”
  • Thyroid problems
  • Chronic fatigue
  • Other joint or liver conditions

Complications of Untreated Haemochromatosis

Without Treatment, Haemochromatosis Can Be Life‑Threatening

If iron overload is not treated, it can lead to serious and sometimes irreversible complications, including:

  • Liver disease

    • Cirrhosis (scarring of the liver)
    • Liver failure
    • Increased risk of liver cancer

  • Heart problems

    • Irregular heart rhythms (arrhythmias)
    • Cardiomyopathy (weakened heart muscle)
    • Heart failure

  • Metabolic and endocrine problems

    • Diabetes (due to damage to the pancreas)
    • Low testosterone or other hormone imbalances

  • Joint disease

    • Severe arthritis, particularly in the hands, hips, and knees

  • Premature death

    • Advanced organ damage can significantly shorten life expectancy if not treated.

How Haemochromatosis Is Diagnosed in Grand Rapids

If you live in the Grand Rapids area and have symptoms or a family history of haemochromatosis, your healthcare provider may recommend:

1. Blood Tests

  • Serum ferritin – measures how much iron is stored in the body
  • Transferrin saturation (TSAT) – shows how much iron is bound to its transport protein
  • Liver function tests – assess liver health

If these tests suggest iron overload, the next step is usually genetic testing.

2. Genetic Testing

A blood test can check for mutations in the HFE gene. This is often done through:

  • Primary care offices in Grand Rapids
  • Gastroenterology, hepatology, or hematology clinics at:
    • Corewell Health (Spectrum Health)
    • Trinity Health Grand Rapids
    • Metro Health – University of Michigan Health
    • Mercy Health

3. Imaging and Specialized Tests (If Needed)

If there are concerns about liver damage, your provider may order:

  • Liver ultrasound
  • MRI to estimate iron levels in the liver and heart
  • In select cases, a liver biopsy

Treatment for Haemochromatosis

Venesection (Therapeutic Phlebotomy)

The main treatment for haemochromatosis is venesection, also called therapeutic phlebotomy. This is similar to donating blood:

  • About 500 mL of blood is removed at a time.
  • Each session lowers the amount of iron in the body, because iron is used to make new red blood cells.

Initial Phase

  • Venesection is usually done weekly or every 1–2 weeks.
  • This phase may last 12–18 months, depending on how high your iron levels are.

Maintenance Phase

Once iron levels are back to normal:

  • Venesection is typically needed 3–4 times per year, for life.
  • Regular monitoring of ferritin and transferrin saturation ensures iron stays in a safe range.

These treatments can be arranged through:

  • Hospital outpatient clinics in Grand Rapids
  • Hematology or infusion centers within local health systems

Effectiveness of Treatment

If haemochromatosis is diagnosed and treated before severe organ damage, people can:

  • Have a normal life expectancy
  • Prevent many complications
  • Reduce symptoms such as fatigue and joint pain

If major organ damage (like cirrhosis or heart failure) has already occurred, treatment can:

  • Prevent further worsening
  • Sometimes improve symptoms
  • Reduce, but not always eliminate, long‑term risks (for example, liver cancer risk may remain higher)

Lifestyle Changes with Haemochromatosis

Medical treatment is essential; diet alone cannot treat haemochromatosis. However, certain lifestyle choices can support your health and help prevent further damage.

Diet and Supplements

  • Do not take iron supplements unless specifically prescribed.
  • Avoid vitamin C supplements, as vitamin C increases iron absorption. (Normal amounts of vitamin C from food are usually fine.)
  • Eat a balanced, healthy diet, including:
    • Whole grains
    • Fruits and vegetables
    • Lean proteins
    • Limited processed foods and added sugars

You still need some iron for normal body function; you do not need to avoid all iron‑containing foods unless your provider instructs you to.

Alcohol and Liver Health

  • Limit or avoid alcohol, especially if you have any liver involvement. Alcohol and iron together greatly increase the risk of liver damage and cirrhosis.
  • This is particularly important in Michigan, where social drinking is common at sporting events, breweries, and seasonal gatherings.

Other Considerations

  • Avoid raw or undercooked shellfish, which can carry bacteria that are more dangerous for people with iron overload.
  • Stay physically active year‑round. In cold Grand Rapids winters, indoor exercise (gyms, community centers, home workouts) can help maintain energy and joint mobility.
  • Maintain a healthy weight to reduce stress on joints and help manage diabetes risk.

Preventing Organ Damage and Protecting Family Members

Early Detection Is Key

If haemochromatosis is diagnosed before symptoms or organ damage appear, maintaining iron in the normal range can:

  • Prevent liver disease
  • Reduce the risk of heart problems and diabetes
  • Preserve quality of life

Family Screening

Because haemochromatosis is hereditary, anyone diagnosed with the condition should:

  • Inform blood relatives (parents, siblings, children, and sometimes extended family).
  • Encourage family members to talk with their healthcare provider about blood tests and genetic testing for haemochromatosis.

Early testing is especially important if relatives live in or around Grand Rapids, where access to lab testing and specialists is readily available.

Conditions That Should Prompt Testing

People with the following conditions should ask their Grand Rapids healthcare provider about testing for haemochromatosis:

  • Unexplained liver disease or abnormal liver tests
  • Cardiomyopathy or unexplained heart failure
  • Early or unusual arthritis, especially in the hands
  • Diabetes without strong typical risk factors
  • Erectile dysfunction, low libido, or early menopause without clear cause

Prompt diagnosis and treatment can reverse some organ damage, improve symptoms, and prevent further harm.

Local Resources in Grand Rapids, MI

If you live in Grand Rapids or the surrounding West Michigan area and are concerned about haemochromatosis, you can start with:

  • Your primary care provider (PCP)

    • Available through Corewell Health (Spectrum Health), Trinity Health Grand Rapids, Metro Health – U of M Health, and Mercy Health clinics across the metro area.

  • Specialist care

    • Gastroenterologists, hepatologists, hematologists, and endocrinologists at:
      • Corewell Health (Spectrum Health)
      • Trinity Health Grand Rapids
      • Metro Health – University of Michigan Health
      • Mercy Health

  • Kent County Health Department & Grand Rapids Public Health

    • Can provide information on local clinics, screening options, and referrals, especially if you are uninsured or under‑insured.

Key Points About Haemochromatosis in Grand Rapids

  • Haemochromatosis (iron overload disorder) is one of the most common hereditary diseases, especially among people of European descent common in West Michigan.
  • Excess iron can damage the liver, heart, pancreas, joints, and hormone‑producing glands, leading to conditions like cirrhosis, heart disease, diabetes, and arthritis.
  • Early haemochromatosis often has no symptoms, so blood tests and genetic testing are important for people at risk.
  • Without treatment, haemochromatosis can cause serious organ damage and premature death.
  • Venesection (therapeutic phlebotomy) is a simple, effective treatment that can normalize iron levels and prevent complications.
  • Prompt treatment can reverse some organ damage and symptoms, and prevent further damage.
  • If you are diagnosed, your blood relatives should be tested, as early detection greatly improves outcomes.

If you live in the Grand Rapids area and recognize these symptoms or have a family history of haemochromatosis, contact your local healthcare provider or one of the major Grand Rapids health systems to discuss testing and treatment options.