In this post, we will share adult care guidelines for patients with Turner Syndrome (TS). We aim to provide a general overview of suggested physician visits, tests, and monitoring to ensure prevention of potential health concerns.

Note: The information in this post is educational and should not replace medical advice from your physician(s). Always consult with a medical professional regarding any health concerns. These guidelines may vary from person to person depending on the patient’s unique circumstances.

A Lifetime of Care

Given the complexity of TS and the its associated medical conditions, it is important to follow the care guidelines for prevention and/or early detection, from childhood to adulthood. Particular issues related to heart conditions, diabetes, thyroid dysfunction, hearing, bone health, and reproductive health often require monitoring during adulthood among patients with TS.

General Monitoring Guidelines for Adults

The lists below provides suggested tests for adults with TS. Please discuss if these tests and their frequencies are right for you with your doctor.

Annually:

• dietary and exercise counseling to prevent the onset of obesity
• estrogen treatment, ovarian function evaluation, and/or family planning counseling
• routine pelvic/PAP smears
• bone density monitoring and receive proper therapy if at risk for osteoporosis
• heart monitoring (for hypertension or other cardiovascular issues, if needed)
• eye exam
• diabetes check-up
• dental evaluation

Every 2 years:

• blood tests (blood count, antibody count, Vitamin D level, etc.)
• thyroid test
• liver and kidney tests
• lipid (fat and cholesterol) and glucose monitoring
• ear, nose, and throat evaluation every 1-5 years
• psycho-social evaluation (if needed)

Every 3-5 Years:

• Dual Energy X-ray Absorptiometry (DEXA) scan (if osteoporosis/osteopenia develops, the scan should be done more often)

Every 5-10 Years:

• kidney ultrasound
• cardiac MRI (in case of chest pain, immediately go to the ER to assess for aortic rupture)

Pregnancy:

Pregnancy increases the above-mentioned risk factors for TS patients. Comprehensive medical, cardiac, and gynecological assessments are important prior to pregnancy. If you are planning to start a family, you may need to visit the following health care providers, as directed by your primary care physician:

• reproductive endocrinologist
• obstetrician
• perinatologist
• cardiologist
• medical geneticist

Written by Dhruvi Patel, TSF volunteer blog post writer and editor. Edited by Susan Herman, TSF volunteer blog post editor and translator.

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