Haemochromatosis: symptoms, causes, diet and treatment

The NHS says symptoms of haemochromatosis usually start between the ages of 30 and 60. Common symptoms include:

• Feeling very tired all the time (fatigue).

• Weight loss and weakness.

• Joint pain.

• An inability to get or maintain an erection (erectile dysfunction).

• Irregular periods, or stopped or missed periods.

• Brain fog, mood swings, depression and anxiety.

The NHS says to see a GP if you have persistent or worrying symptoms that could be caused by haemochromatosis, particularly if you have a northern European family background, or if you have a parent or sibling with haemochromatosis, even if you do not have symptoms yourself. Tests can be done to check whether you are at risk of developing problems. The GP may want to rule out other causes of symptoms before arranging a blood test.

The NHS says there is currently no cure, but there are treatments that can reduce the amount of iron in the body, relieve some symptoms and reduce the risk of damage to organs such as the heart, liver and pancreas.

The NHS says you do not need to make big changes to your diet, such as avoiding all foods containing iron. This is unlikely to be of much extra help if you are having treatment, and could mean you do not get all the nutrition you need. You will usually be advised to:

• Have a generally healthy, balanced diet.

• Avoid breakfast cereals that have been fortified with extra iron.

• Avoid taking iron and vitamin C supplements, which may be harmful for people with high iron levels.

• Be careful not to eat raw oysters and clams, which may contain bacteria that can cause serious infections in people with high iron levels.

• Avoid drinking excessive amounts of alcohol, which can increase the level of iron in the body and put extra strain on the liver.

The NHS says haemochromatosis is an inherited condition where iron levels in the body slowly build up over many years. This build-up, known as iron overload, can cause unpleasant symptoms and, if not treated, can damage parts of the body such as the liver, joints, pancreas and heart.

The NHS says it most often affects people of white northern European background, and is particularly common in countries where lots of people have a Celtic background, such as Ireland, Scotland and Wales.

The NHS says haemochromatosis is caused by a faulty gene that affects how the body absorbs iron from your diet. You are at risk of developing the condition if both of your parents have this faulty gene and you inherit one copy from each of them.

You will not get haemochromatosis if you only inherit one copy of the faulty gene, but there is a chance you could pass it on to any children. If you inherit two copies you will not necessarily get haemochromatosis: only a small number of people with two copies will ever develop it, and it is not known exactly why.

The NHS says haemochromatosis can usually be diagnosed with blood tests. Speak to a GP about getting tested if you have persistent symptoms, or a parent or sibling has been diagnosed, even if you have no symptoms. The tests include a full blood count, a liver test, a transferrin saturation level test and a serum ferritin level test. If blood tests suggest haemochromatosis, a DNA test checks whether you carry the gene associated with the condition.

If it is confirmed, you may need further tests to check for organ damage, particularly to the liver, such as a liver ultrasound (Fibroscan) or MRI, an ECG or echo for the heart, tests for joint disease and diabetes, and a DEXA scan for osteoporosis. The NHS notes that high iron can also have other causes, such as long-term liver disease, frequent blood transfusions, alcohol misuse and iron supplements.

The NHS says that if the condition is diagnosed and treated early on, haemochromatosis does not affect life expectancy and is unlikely to result in serious problems. If it is not found until it is more advanced, high iron levels can damage parts of the body and lead to potentially serious complications:

• Liver problems, including scarring of the liver (cirrhosis) or liver cancer.

• Diabetes.

• Arthritis, with pain and swelling in the joints.

• Heart failure.

On the NHS, testing starts with your GP and, if iron overload is confirmed, you are referred to a hospital specialist for diagnosis, further tests and venesection. Haemochromatosis UK is a patient-run charity that the NHS points to for information and support.

Private clinics can offer iron studies and specialist review. Ask what your ferritin and transferrin saturation results were, whether a gene test has been done, and how often venesection is planned, since lifelong maintenance is usual.