Regular evaluations can help make sure you’re getting the right care. Many assessments to monitor PK deficiency are done on a yearly basis, but some need to be done more often based on transfusion frequency, the need for chelation therapy, and discoveries from previous tests.
Explore the key terms used on this page
If there is evidence of iron overload, your doctor may do additional blood tests to check hormone levels. Iron overload can affect sex hormones or cause changes that contribute to thyroid problems or diabetes.
Extramedullary hematopoiesis: Blood cell production occurring outside of the bone marrow, in organs such as the liver or spleen, due to the excessive production of RBCs daily
DXA (or DEXA) scan: An X-ray performed to assess bone strength
MRI: A scan performed to look for iron overload in the liver and heart
Abdominal ultrasound: A test that can be performed to look for gallstones or other complications involving the gallbladder
Echocardiogram (echo): A test assessing heart function and signs of pulmonary hypertension
The need and timing of tests varies for everyone. Talk with your doctor about each test to determine a monitoring plan.