BE READY for your DOCTOR VISIT
Whether it's your first appointment or a follow-up, being engaged during the visit can help your doctor correctly diagnose you or your child.
Sunindiya
Living with XLH
tips for your appointment
Family history
Be ready to share your or your child’s medical and family history to help guide the conversation with your doctor.
Questions
Bring a list of questions you have and any information you’d like to review together.
Symptoms
Write down any symptoms you or your child have had as well as medications either of you are taking.
Insurance
Gather your insurance information and bring it to the visit.
Fill out the Doctor Discussion Guide before your next appointment.
What to expect during your visit
Your care team may want to run laboratory and genetic tests to help confirm an XLH diagnosis. Because people with XLH have low levels of phosphorus, your doctor may ask for a serum phosphorus test to check phosphorus levels in the blood.
What happens during a serum phosphorus test?
A small blood sample is taken, usually from your arm
The test is quick and routine
Results are typically available within a few days
Your doctor may request a fasting test (no food beforehand) to get the most accurate results
Shannon
Living with XLH
Getting a diagnosis can take time
Because XLH is rare, it can go undiagnosed or be mistaken for another condition. You may need to see more than one doctor, and additional testing is sometimes needed to get an accurate diagnosis.
Things that may prompt further testing
In children:
Bowed legs or knock knees, especially without a family history, may lead doctors to recommend further testing.
In adults:
Testing may be needed to see if below-average height or symptoms like bone pain, stiffness, or joint problems are from XLH. Share your symptoms and family history with your doctor.
COMM-US-RDS-0999 August 2026