Treatment options for iron overload : University College London Hospitals NHS Foundation Trust

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Iron overload occurs when there is too much iron in the body. This can happen if you:

Are receiving regular red blood cell transfusions. This is called transfusional iron overload and happens because red cells contain iron. You are at risk of transfusional iron overload if you are having regular top-up transfusions. These are where you only receive blood and blood is not taken out at the same time. If you have exchange transfusions where blood is taken out and given at the same time, iron may not build up as fast or at all. Exchange transfusions are only usually suitable for people with sickle cell disorder.
Have a genetic disorder that causes you to absorb more iron from food than normal. This is common in genetic haemochromatosis, but can also be caused by a red cell disorder.
Have been taking too many iron supplements. This is called iatrogenic iron overload.

The body has no natural way of getting rid of excess iron. It deposits in the organs which can lead to organ damage over time.

Symptoms of iron overload vary depending on where the extra iron is stored in your body. People often don’t notice any symptoms until the iron overload is severe.

The excess iron can damage several organs:

The heart – iron build-up in the heart can cause irregular heart rhythm and lead to heart failure. While this is less common in people with sickle cell disorder, it can be a problem in those with genetic haemochromatosis. In the past, people with thalassaemia who did not manage their iron overload well often died in their early 20s due to complications.
The liver – excess iron in the liver can cause scarring known as fibrosis. Fibrosis can then progress to cirrhosis, a severe form of liver damage that may lead to liver failure. Symptoms of cirrhosis include loss of appetite, tiredness, very itchy skin and jaundice (yellowing of the skin). Long-term significant iron overload in the liver can sometimes lead to liver cancer.
The pancreas – iron in the pancreas can lead to diabetes. Symptoms of diabetes include peeing more often, feeling thirsty and very tired, and unexplained weight loss.
Hormone glands – iron build-up can affect various hormone glands. The thyroid may slow down causing tiredness. The parathyroid gland may not work properly causing bone health issues. And the sex hormone glands in the brain can cause problems with puberty, growth and fertility.

There are several types of tests that can measure the level of iron in your blood and within your organs. We have outlined them below.

Monitoring blood transfusions. By counting the amount of blood you have received, we will have a good idea whether transfusional iron overload is likely.
Ferritin and iron studies. Ferritin is a protein that stores iron. Both ferritin and iron studies involve taking a blood sample to estimate the amount of iron in the body. Ferritin studies can be performed at any time. Iron studies are only performed when you have not had any iron-containing food for about 12 hours. The results from both studies are usually available within a few hours. As ferritin levels can also be high when you have an infection or liver inflammation, these studies may not always be enough to understand what is going on.
Specialised MRI scans. These scans measure iron levels in the heart and liver. They are excellent for monitoring iron levels if you have significant iron overload. If this is the case, you will have these scans once a year.
Monitoring organ function. You can have blood tests to check how well your organs are functioning and to see if there is a build-up of iron in them. These tests may be for thyroid function, liver function, sex hormone levels and bone health. People with iron overload have these tests every three months. Additionally, a glucose tolerance test is done once a year to screen for diabetes.
Liver biopsy. Occasionally, a liver biopsy may be necessary. This involves taking a small sample of liver tissue to measure iron levels. Liver biopsies are not commonly used to check iron levels but they may be done for other reasons. For example, if we suspect cirrhosis or if you have a liver virus such as hepatitis C.

We will give you information about any tests you will have.

If you are receiving regular blood transfusions, treatment for excess iron usually begins when your ferritin levels are close to 1000ug/l.

If you have a red cell disorder and your ferritin is high but you are not receiving regular transfusions, you will have an MRI scan to measure the amount of iron in your liver and heart. Once your healthcare team have this information, they will agree on the most appropriate treatment for you.
If you needed blood transfusions for a period of time, such as during treatment for a blood cancer or during a bone marrow transplant, your iron overload will be treated when you are better and have left hospital.
If you don’t have an inherited red cell disorder but become dependent on blood transfusions later in life (for example due to bone marrow disease), your treatment will be tailored to your needs and circumstances. Research suggests that treatment does not always improve symptoms for these patients. So, we will carefully weigh the benefits of treatment against any downsides to make sure that it is right for you.
If you have genetic haemochromatosis with significant iron loading, your treatment will aim to bring your ferritin level down to about 30ug/l. If your iron levels aren’t high at the time of diagnosis, your healthcare team might suggest monitoring instead of starting treatment.

There are two ways to treat iron overload:

Using medicine that removes extra iron from the body (chelation therapy).
Removing blood (venesection).

Venesection involves taking blood out of your vein, done in a similar way to donating blood.

A nurse will find a suitable vein in your arm and place a cuff around the top of your arm. They will clean your skin with an antiseptic wipe and insert a needle or cannula (a small plastic tube) into the vein. The blood will be collected into a venesection bag. The bag will be placed on weighing scales to keep track how much blood is being taken.

As your body replaces the blood that was removed, it uses the existing iron stores. Over time, repeated venesections will reduce the amount of iron in your blood.

The amount of blood taken, the frequency of venesections, and the total number of sessions will depend on your individual needs. Your doctor will discuss this with you in more detail.

Venesection is usually performed in the haematology, adolescent or paediatric day unit.

Please note that venesection is only suitable for you if you are not currently receiving regular blood transfusions.

Side effects include:

Feeling faint. To help with it, drink plenty of fluids before and after the venesection. If you still feel faint, we can give you fluids through IV (into your vein) or take out less blood, or both.
Bruising. You may have some bruising where the needle was inserted.
Anaemia (low red blood cell count). This can happen if your venesections are frequent. We may then need to pause them or reduce their frequency.

Chelation therapy uses a medicine that binds to the extra iron in your body. The iron and the medicine are then removed from your body through pee or poo, or both.

There are three types of iron-removing medicines used in chelation therapy:

desferrioxamine (also called Desferal®)
deferiprone (also called Ferriprox®)
deferasirox (also called Exjade®).

Your doctor will talk to you about the type of therapy that is best for you.

It can be difficult to remember to take your iron chelators every single day. We have charts that can be useful so let us know if you would like one.

The information on this page is intended to be a guide only. Please talk to your haematology doctor about specific details of your treatment. And feel free to ask questions if there is anything that you are not sure of.

How do I take desferrioxamine?

There are two ways to administer this medicine:

under the skin (subcutaneously) using Thalasset® or butterfly needles, or
into a vein (intravenously). This is when a needle under the skin is not suitable for you and a long-term intravenous line is used instead. You and your nurse will develop a plan to look after your intravenous line.

How often should I take desferrioxamine?

Your haematology doctor will advise you on the dose and frequency of your treatment. For many people it is often at least five days a week. It's important that you follow their instructions carefully.

Possible side effects

Desferrioxamine is commonly used and many people experience no side effects. Possible side effects include:

Irritation or blisters on the skin where the needle was inserted. You can avoid this if you rotate the site of injections. It’s also important to make sure that the needle is properly positioned under the skin. Your nurse will give you information on what to look out for if you have a long-term intravenous line.
Ringing of the ears (tinnitus) and a decrease in night vision. It is important that you have hearing and eye monitoring every year.
Abdominal pain, fever, diarrhoea and vomiting. These symptoms may be a sign of infection caused by Yersinia bacteria. Desferrioxamine can make the infection worse by feeding the bacteria with the iron it has picked up. If you notice any of these symptoms, stop your treatment and contact us without delay.

Storing desferrioxamine

Keep it in the original packaging in the fridge.
Don’t freeze it.
Keep it away from children.
Check the expiry date.

How do I take deferiprone?

Deferiprone is a tablet taken three times a day. It’s important that you take only the prescribed dose and check the expiry date. An occasional missed dose will not cause complications. But frequent missed doses will cause long-term problems, such as iron overload. If you take more than you should, please contact us without delay.

Possible side effects

Infection. Deferiprone can reduce the body’s ability to fight infection by lowering the levels of neutrophils, a type of white blood cells that respond to infection. You will have a blood test every two weeks to check that neutrophils are not affected. If you have a sore throat, temperature above 38°C, or feel shivery or hot, please contact us. If it’s out of hours, go to the Emergency Department (A&E) as you may need antibiotics.
Reddish-brown colour of your pee. This may look alarming but will not cause long-term problems.
Nausea and sickness. Taking the tablets with meals can help with this.
Increased appetite.
Stomach pain.
Joint pain.
Abdominal pain, fever, diarrhoea and vomiting. These symptoms may be a sign of infection caused by Yersinia bacteria. Deferiprone can make the infection worse by feeding the bacteria with the iron it has picked up. But this is more common if you take desferrioxamine and less common if you take deferiprone. If you notice any of these symptoms, stop your treatment and contact us without delay.

Storing deferiprone

You should keep this medicine away from children and store it above 30°C.

How do I take deferasirox?

Deferasirox is taken once a day as a tablet which dissolves in water. It’s important that you only take the prescribed dose and check the expiry date. An occasional missed dose will not cause complications. But frequent missed doses will cause long-term problems, such as iron overload. If you take more than you should, contact us without delay.

Possible side effects

Nausea, sickness and diarrhoea. These usually improve over time.
Stomach pain and indigestion.
Kidney problems. You will have regular blood tests to check that the kidneys are working properly.
Abnormal liver function. You will have regular blood tests to check that your liver is working properly.
Skin rashes.
Blurred vision.
Hearing problems.
Abdominal pain, fever, diarrhoea and vomiting. These symptoms may be a sign of infection caused by Yersinia bacteria. Deferiprone can make the infection worse by feeding the bacteria with the iron it has picked up. But this is more common if you take desferrioxamine and less common if you take deferasirox. If you notice any of these symptoms, stop your treatment and contact us without delay.