Liver damage

Iron is stored in the liver. If there is too much of it, it can damage liver cells, causing scarring. Your doctor may call this fibrosis. The scarring makes the liver stiff. If your doctor is concerned that iron is causing liver damage, they will ask you have tests to measure the degree of stiffness. You may have ELF or FIB-4 blood tests and a type of ultrasound called transient elastography, sometimes called a FibroScan.

 Find out more about transient elastography

If liver damage continues, it can eventually develop into cirrhosis. This means there is so much scarring that the liver can’t work properly.

 Find out more about cirrhosis including symptoms and treatment

Having cirrhosis increases your risk of developing a type of liver cancer called hepatocellular carcinoma (HCC). If you are at risk of HCC, your doctor will organise regular monitoring (doctors usually call this ‘surveillance’). This is so that any changes indicating cancer will be picked up as early as possible. This greatly increases the chance of successful treatment.

Find out more about regular checks for liver cancer

Liver biopsy

This means taking a sample of liver tissue to look at under a microscope. Doctors used to do this to measure fibrosis or check for signs of cirrhosis. But other tests are now just as good at doing this so it’s done less often. If your test results are unclear or contradict each other, your doctor may suggest it.

Find out more about having a liver biopsy

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Joint problems

Excess iron can damage your joints, leading to arthritis. This is very common in people with iron overload. But unfortunately, it is also common in people who have regular treatment to keep iron levels under control. More than 8 out of 10 people with haemochromatosis have pains in their joints. This is most often in the hips and ankles or hands and wrists.

If you do develop arthritis, your doctor will offer pain killing and anti-inflammatory medicines. Physiotherapy may also help. In some cases, people with haemochromatosis need to have joint replacement surgery. On average, they need this type of surgery at a younger age than those without haemochromatosis.

Arthritis UK is a UK charity that offers information about arthritis and its treatment. You can find out more about it there.

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Bone thinning

Doctors call this osteoporosis. It means that your bones are losing calcium. This means they are not as strong as they were. It also increases the risk of fractures. Again, it is excess iron that causes damage to the bones. Even if your iron levels are controlled with treatment, you may have a higher than normal risk of osteoporosis.

Your doctor may suggest a bone density scan. This will show if you need any treatment. There are medications you can have to try and prevent any further loss of calcium. These are called bisphosphonates. They are usually tablets that you take once a week. There is also an injectable type, but this is used less often. You have it as an infusion into a vein once a year.

Bisphosphonate tablets do have side effects. In particular, they can irritate the lining of your stomach. Your doctor will discuss this with you if you need to take them.

Read more about osteoporosis

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Diabetes

If you have diabetes, it means your body is less able to control the level of glucose in your blood.  This is a serious condition that can lead to many complications if it isn’t diagnosed and controlled with diet, tablets or insulin.

People with haemochromatosis are more at risk of diabetes because excess iron can collect in the pancreas, damaging the cells that produce insulin. The iron may also make your body cells less receptive to the insulin you do produce.

Your doctor will monitor your blood sugar when you have routine blood tests. But if you notice symptoms such as peeing more often, feeling very thirsty or losing weight, tell your doctor.

Diabetes UK has a lot of information about symptoms, diagnosis and managing diabetes that you may find helpful. They also have a page on diabetes and haemochromatosis.

Controlling your iron levels will reduce your risk of diabetes. It will also help to reduce your risk if you eat healthily and manage your weight. See our page on living with haemochromatosis for more information.

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Heart problems

Excess iron can damage heart muscle, causing heart problems. This is rarely seen in people whose iron levels are controlled with treatment. If you have severe iron overload, your doctor may check your heart with tests such as ECG or heart MRI. Having excess iron removed with regular venesection can help to improve heart problems.

Unfortunately heart problems are more common in juvenile haemochromatosis, which starts early in life, in children and young people in their teens and twenties.

Find out more about juvenile haemochromatosis.

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Other hormonal changes

As with heart problems, these are rare in adult haemochromatosis that is well controlled. But they can affect children and young people with juvenile haemochromatosis. They may also come on in more advanced disease in adults.

Sex hormones and thyroid hormones may be affected. Men may have difficulty getting an erection. And women may find that their periods stop at an earlier age than normal menopause.

Fatigue is common in haemochromatosis. Low levels of thyroid hormones can make this worse.

Your doctor will monitor your hormone levels if they think they have been affected. Again, keeping your iron levels well controlled with treatment makes these symptoms less likely.

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