Treatment

Treatment of haemochromatosis is simply aimed at removing iron from your body. As the body has no natural method for getting rid of the extra iron, this done by regular bleeding known as phlebotomy.

During phlebotomy a unit of blood, usually 450 millitres (ml), is removed. This amount will contain 220mg of iron. Bleeding in this way will activate the remaining stored iron to make new red blood cells.

You will be required to have phlebotomy once a week, depending on the degree of your iron overload. This may continue for up to two years. Over this period doctors will monitor your serum ferritin levels until they fall to a safe level (generally 20 mcg per litre). Removing blood does not stop the iron building up.

Phlebotomy
Phlebotomy, also called venesection (or venepuncture), is much the same method as is used for blood donation. Blood is extracted by a person specially trained to do this, called a phlebotomist, or a doctor or nurse. It is normally an outpatient procedure.

To collect the blood a syringe with a needle is inserted into a vein on your inner arm. You should only feel a tiny pin-prick as this is done and the rest of the procedure should be painless.

It is possible that you may feel a little dizzy or nauseous during or after phlebotomy. You may be encouraged to rest for a short while following the procedure. Over the next 24 hours it will help to drink plenty of fluids and eat regularly to replace your lost blood cells.

After your course of treatment you will be required to have further phlebotomies two to four times a year for the rest of your life. Doctors will continue to monitor transferrin saturation and serum ferritin levels (ideally maintained at 50% and 50 mcg per litre respectively) to assess when phlebotomy may be required. This is known as ‘maintenance therapy’.

Who will be looking after me?
In hospital it is likely you will be treated either by a specialist in liver disease called a hepatologist, a specialist in digestive disorders called a gastroenterologist, or a specialist in blood disorders called a haematologist.

Where you may have other conditions or problems caused by haemochromatosis, additional
specialists may be involved in your care. These may include a cardiologist (heart), an endocrinologist (glands) or rheumatologist (joints).

Can I return to normal?
Some of the symptoms of haemochromatosis will go away and some will not. This is likely to depend on the stage at which your disease has been diagnosed.

Generally, any conditions that existed before your treatment for haemochromatosis was begun will not improve.

An enlarged liver may reduce in size but if cirrhosis has become advanced, improvement is unlikely. If you have cirrhosis, doctors may run blood tests and imaging tests at regular intervals (usually every six months). Having cirrhosis will put you at a much higher risk of developing hepatocellular carcinoma (HCC).

If this occurs, a liver transplant may be required. This is usually only recommended if other treatments are no longer helpful and your life is threatened by end stage liver disease. It is a major operation and you will need to plan it carefully with your medical team, family and friends.

In diabetes, phlebotomy will not be able to repair damage to your pancreas. Other serious problems such as arthritis and sexual disorders arising from damage to the pituitary gland are unlikely to improve.

Symptoms such as tiredness and abdominal pain should lessen with recovery. The colour of your skin should return to normal.

If you have heart disease, such as cardiomyopathy, any improvement will be linked to the severity of any damage caused by haemochromatosis.