Living with sickle cell disease is complex enough without having to manage the hidden side effects of your treatments.
Blood transfusions are a lifeline for many, helping prevent strokes, treat acute chest syndrome, and support people through certain critical situations such as surgery under general anesthesia. Regular transfusions may also help prevent recurring pain crises in some people.
But relying on transfusions can come with another issue that’s often missed: iron overload. With repeated transfusions, iron can build up in the body, especially with simple transfusions, and may require its own treatment and monitoring.
This article covers why iron overload happens, how doctors track it, and what treatment looks like. That way, you can walk into your next appointment with clearer questions and a better sense of what to expect.
Red blood cells contain iron, and transfusions can add more of it to your body. Your body has no built-in way to get rid of extra iron. It can adjust how much iron it absorbs from food, but it can’t simply remove iron added through transfusions.
The extra iron can therefore stay in the body. Over months and years of regular transfusions, it can build up and settle into your liver, heart, and other organs.
Iron overload can be overlooked until iron levels are already high. Because it often causes no symptoms early on, it’s worth asking your care team how your iron levels are being monitored.
Not all transfusions add iron at the same rate. Simple transfusions add donated red blood cells to your blood. Exchange transfusions remove some of your own red blood cells while adding new ones, so they tend to add less iron over time.
Knowing your transfusion history, including which type you’ve had, can help your care team judge your iron overload risk.
Iron overload can affect your liver, heart, and glands that make hormones. Not everyone has problems in all three areas. Some organs are at higher risk, and doctors have specific tests to track your iron levels.
Iron tends to build up in the liver more than anywhere else in people with sickle cell disease. Over years, too much iron in the liver can cause scarring, or fibrosis, and may eventually lead to cirrhosis. This can raise the risk of longer-term liver disease.
The glands that make hormones, like the pancreas and thyroid, are affected less often. While frequent transfusions for conditions like thalassemia often impact these areas, this is much less common in sickle cell disease. Still, it can happen after years of heavy transfusions, and it can show up as diabetes or an underactive thyroid.
In rare cases, iron buildup in the heart can affect its rhythm or its ability to pump blood. Heart failure from iron overload is a medical emergency.
If you notice new shortness of breath, chest pain, or a fast or irregular heartbeat, with or without swelling in your legs, get emergency care right away. With prompt treatment, heart failure from iron overload is often reversible, even though the iron itself takes longer to clear.
Iron overload usually doesn’t cause noticeable symptoms early on, so you might feel completely fine even if your iron levels are climbing. That’s part of why routine testing matters, even without symptoms.
Doctors typically start with a blood test called serum ferritin. It gives a rough sense of how much iron is stored in your body. Ferritin can rise for other reasons, such as inflammation or a pain crisis, so it isn’t a perfect measurement on its own.
For a clearer picture, doctors often use a special magnetic resonance imaging (MRI) scan to measure iron concentration in the liver. A heart MRI may be considered for people with a high iron burden or signs of heart problems. Liver MRI has mostly replaced liver biopsy — an older, more invasive test that required removing a small piece of the liver.
Doctors may also use blood tests to check for hormone problems, such as thyroid problems or changes in blood sugar.
The good news is that iron overload isn’t usually a reason to stop getting transfusions. The main treatment for transfusion-related iron overload is a group of medicines called iron chelators.
Three medicines are approved for treating transfusion-related iron overload. They attach to the extra iron so your body can get rid of it through your urine or stool:
Doctors typically recommend starting chelation once iron levels reach certain thresholds. Reaching that point usually takes several transfusions over time, not just one or two.
For people with higher iron levels, doctors sometimes combine two chelation medicines instead of using just one. Your care team will typically choose the type, dose, and combination based on your iron levels, how well you tolerate the medicine, and what fits your daily routine.
Chelation medicines work well if you’re able to take them consistently. That can take some adjusting because schedules and dosage forms differ.
Side effects like an upset stomach can make it hard to stick with a routine, especially when you are already managing pain crises, transfusion appointments, and daily life with sickle cell disease.
Missing some doses doesn’t mean chelation is no longer worth taking. Treatment can still help.
Research suggests that even if you don’t take every dose exactly as planned, chelation can still help protect your organs. Taking it regularly can help even more. Your care team may also be able to adjust the type or timing of your medicine to make it easier to fit into your routine.
If you’re having trouble staying on track with chelation, tell your hematology team what’s getting in the way. They can work with you to find a plan that’s more manageable.
Regular monitoring matters just as much as the medicine itself. Regular serum ferritin checks and liver MRI scans roughly every one to two years help your care team track iron levels before they lead to organ damage. If you’re managing this for a child, their care team can tell you how often these tests are needed.
Iron overload can be missed, even in people who get regular blood transfusions. If it hasn’t come up recently, ask your care team whether you need a ferritin test, MRI, or other follow-up.
Before your appointment, write down your transfusion history and the dates of your most recent iron tests. Bring any questions you have about your iron levels, chelation treatment, or how often you should be checked.
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