COMPLICATIONS OF BETA-NTDT
What are some complications that can occur in people living with non–transfusion-dependent beta-thalassemia (beta-NTDT)?
Click on the icons to learn more about each complication:
Blood clots
Several things that happen in thalassemia can add up to you getting a dangerous blood clot that lodges in a blood vessel, where it can cause a block in the heart or a stroke in the brain. For patients who do not receive regular transfusions, this can be more common.
Brittle bones
Most blood cells are made in the bone marrow (the spongy material inside bones). In patients with thalassemia, it can expand due to increased demand for red blood cells, which causes your bones to widen. This can make your bones thin and brittle, increasing the chance of broken bones.
Heart failure
The heart muscle can’t pump enough blood to meet the body’s need for blood and oxygen. In thalassemia, heart complications are one of the major concerns. Several things might cause heart disease, including iron overload. Heart disease can progress to heart failure and possibly death.
Iron overload
People with thalassemia who receive regular transfusions, as well as those who do not receive regular transfusions, can get too much iron in their bodies either from frequent blood transfusions or the disease.
This means a lot of iron is moving around in the blood. When iron builds up, it collects in places like the heart, liver, and endocrine organs and can make it hard for these organs to work properly.
Leg ulcers
Anemia results in reduced oxygen delivery to tissues like the skin, making it easier for ulcers, or sores, to develop.
Liver disease
When iron deposits into the liver, it can lead to fibrosis (scarring of the liver) and cirrhosis (severe scarring, which can prevent proper functioning).
Low production of hormones
Hormones are chemicals the body produces and uses to regulate almost every organ and function. Due to anemia or iron overload, thalassemia can result in lower production of certain hormones. This can be associated with a number of conditions, including growth delays, delayed puberty, thyroid problems, and diabetes.
Production of blood cells outside the bone marrow
This can occur in all types of thalassemia when red blood cells are not produced properly in the bone marrow. This can lead to enlargement of organs such as the spleen and liver.
Pulmonary hypertension
A type of high blood pressure in the lungs. The breakdown of red blood cells (hemolysis) can cause it, and so can iron overload.
This is not a complete list of possible complications. For medical advice, please consult with your doctor.
Many thalassemia complications result from chronic anemia. Some complications can lead to end-organ damage and can be life-threatening if not properly monitored and managed.
Monitoring helps you and your care team identify problems and prevent them from becoming worse. Download the NTDT monitoring guide to help keep track of your thalassemia.
In people not receiving regular blood transfusions, those with more severe anemia were more likely to have serious health issues
In a 10-year study of 53 patients with beta-NTDT intermedia, those with more severe anemia were more likely to have serious health issues.
21%
of people with thalassemia with hemoglobin ≥10 g/dL had a complication
87%
of people with thalassemia with hemoglobin <10 g/dL had a complication
In people with beta-thalassemia, an increase of 1 g/dL in hemoglobin may be associated with a reduced risk of future serious complications, such as stroke, organ damage, and blood clots.*
*
This is not medical advice. Consult with your doctor.
People with higher levels of iron in their blood (measured as ferritin) may have a higher risk of thalassemia complications. In a 10-year study of patients with beta-NTDT, those with:
- Ferritin levels of 800 ng/mL and up had the highest risk of complications
- Ferritin levels above 300 to under 800 ng/mL had lower risk of complications
- Ferritin levels of 300 ng/mL or below had no risk of complications
In healthy adults without thalassemia, ferritin levels typically range from 40 to 300 ng/mL for men and 20 to 200 ng/mL for women.
In this study, all patients had beta-thalassemia intermedia (non–transfusion-dependent thalassemia). Complications evaluated in the study included liver disease, abnormal formation of blood cells outside bone marrow, diabetes, brittle bones, low production of sex hormones, blood clots, pulmonary hypertension, and low levels of thyroid or parathyroid hormone.
Getting your hemoglobin and ferritin levels (a measure of iron in the blood) checked is an important part of regular monitoring.
I had to have my spleen removed when I was 9 years old. My gallbladder failed, so my organs are affected. My bone marrow—I have osteoporosis just because the thalassemia just destroys everything inside as well, if not maintained correctly.
Beta-TDT=transfusion-dependent beta-thalassemia.
It’s critical that you monitor your thalassemia
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