FOR WOMEN

 

It is important to note that estrogen levels may fluctuate or decline over time, therefore physicians should monitor the levels as appropriate.  

 

Women with Turner syndrome need hormone replacement therapy (ERT) for healthy bones.  Most medical professionals agree that the risk of developing osteoporosis, a disease in which bones become brittle and fracture, outweighs the risk of adverse health effects due to ERT. Osteoporosis may occur in as many as 50% of women with Turner syndrome who do not take estrogen.  Your health care professional should partner with you in helping find your optimal HRTtreatment.

 

Other benefits of estrogen include effects on nonverbal processing speed and motor function, psychosocial functioning, and social-cognitive processing. 

 

TS specialists suggest taking estrogen replacement therapy until the age of 50 or until your physician and you determine your specfiic needs. 

 

Specific recommendations and medication dosages are recommended in the Clinical Practice Guideline for TS. Share these guidelines with your healthcare providers.  Note: the Guidelines are currently out of date for information related to growth hormone and ERT.

 

 

 

FOR GIRLS

 

If a girl does not begin puberty on her own, the missing female hormones can be replaced with medication.

 

The decision of when to begin estrogens is one each girl and her parents must make, trying to balance continued growth with starting puberty. When to start estrogen and increase dosages are important decisions, and families should discuss the various aspects of it thoroughly. Decisions will be different for each family.

 

Delaying the start of puberty may affect a girl’s self-image, her friendships with peers and her healthy sexual development. Most girls with TS begin estrogen treatment between 12 and 15 years of age, beginning with a low dose that starts the process of breast development, growth of the uterus (womb) and change in body contours. Once estrogens reach high enough levels to bring about puberty (breast development), bone age advances more quickly and the clock ticks faster towards the time when growth stops. The average girl without TS begins breast development between 10 and 11 years of age and has her first menstrual period between 12 and 13 years, although some do not start breast development until the age of 13.5 years.The dose of estrogen is increased over one to three years, and then progesterone is added to begin menstruation. The standard level of estradiol (the major estrogen produced by the ovaries) can be achieved using transdermal patches.

 

 

Benefits of Estrogen Replacement Therapy include:

 

• Physical maturation

• Cognitive function (mental maturation)

• Possible decrease of risk for stroke and heart disease

 

Specific recommendations and medication dosages are recommended in the Clinical Practice Guideline for TS. Share these guidelines with your health care providers. Note: the Guidelines are currently out of date for information related to growth hormone and HRT.

 

 

 

TSSUS professional advisors are available to consult with your health care providers.  If you would like your doctor to network with a TS specialist, please have him/her email or phone TSSUS at 800-365-9944 or tssus@turnersyndrome.org.