HOW TO BE PROACTIVE AND DEVELOP A MONITORING PLAN THAT’S RIGHT FOR YOU
Understand monitoring recommendations
What exactly should you be monitoring?
Whether you have alpha-thalassemia or beta-thalassemia, knowing which tests are needed can help you and your doctor prevent and manage complications. It’s important to work with your care team to build a personalized monitoring plan based on your thalassemia type and transfusion experience. Together, you can track your plan over time, including:
- Lab tests—complete blood count (hemoglobin levels), serum ferritin levels (iron in your blood), liver and kidney function
- Red blood cells formed outside of the bone marrow
- High levels of iron (iron overload)
- Heart function
- Weak and fragile bones (osteoporosis) and bone disease
- Hormone imbalance
Advocate for yourself
Use this NTDT monitoring guide created just for you
The monitoring guide below shows recommended testing and frequency for people living with non–transfusion-dependent alpha- or beta-thalassemia who are aged 18 and over. This monitoring guide was created based on input from the Thalassaemia International Federation (TIF) guidelines and a Steering Committee of leading thalassemia experts organized by Agios. These experts were compensated by Agios for their time. This information can be used in conversations with your doctor about monitoring.
Have a conversation with your doctor about what you’ve learned
It could be helpful to get familiar with the latest guidelines for the type of thalassemia you have and discuss with your doctor.
Know your numbers
Studies have shown if you have beta-thalassemia, an increase of 1 g/dL in hemoglobin may be associated with a reduced risk of serious future complications, such as stroke, organ damage, and blood clots.*
People with higher serum ferritin levels may have a higher risk of thalassemia complications. A 10-year study of patients with non–transfusion-dependent beta-thalassemia showed these results:
- Highest risk: 800 ng/mL and up
- Less risk: above 300 to below 800 ng/mL
- No complications: at or below 300 ng/mL
*This is not medical advice. Please consult with your doctor.
Getting your hemoglobin and ferritin (iron in the blood) levels checked is an important part of regular monitoring.
Gather a team you trust
Angela
Agios Clinical Nurse Educator
Be vocal. Tell them what you need
It’s important to regularly check in and work with your care team to monitor your symptoms, because they could be signs of more serious complications and problems that can affect your organs. Now that you’ve learned new information about the risks associated with thalassemia, ask your doctor what can be done to proactively monitor your condition and potentially prevent complications.
It’s important to build a comprehensive care team to assist with your overall monitoring and care plan.
Clinical Nurse Educators are employees of Agios Pharmaceuticals and do not provide medical advice. For medical advice or treatment-related questions, please talk to your healthcare team.
Discover tools to set goals and self-advocate
Learn About ManagementJoin us for our online and in-person events with thalassemia
Learn About Events