Who is the leaflet for?
This information leaflet provides support and advice with the following for people diagnosed with Turner’s Syndrome (TS):
- Cardiac surveillance / Imaging
- Starting new medications
- Lifestyle, exercise and sports participation
- Warning signs: when to contact emergency services
- Pregnancy
Cardiac screening upon diagnosis and frequency of surveillance
| Surveillance / Imaging | What it does | Frequency |
|---|---|---|
| Surveillance / Imaging 1. 12-lead ECG | What it does Measures & monitors the electrical activity of the heart, particularly the QT-interval in women with TS. | Frequency At least once a year. |
| Surveillance / Imaging 2. Echocardiogram | What it does Looks at the structure of the heart, surrounding blood vessels, pumping chambers & blood flow. |
Frequency
Repeat in 1 year after initial echocardiogram. Thereafter dependant on current aortic dimensions/any interval change in size, the presence/absence of valve/blood vessel abnormality and whether or not you have high blood pressure. |
| Surveillance / Imaging 3. MRI / CT Scan | What it does Provides detailed imaging of the heart and major blood vessels. | Frequency Dependent on the initial test findings and any interval change. |
- Check with your heart specialist regarding the frequency and type of imaging surveillance required.
- If your QT-interval is prolonged, your doctor will need to do some blood tests to check your electrolytes (potassium, calcium, magnesium) and may start you on a medication called a beta-blocker (Propanolol or Nadolol).
- Prolonged QT interval defined in women with TS as a corrected QT interval [QTc] of more than 460ms.
- You should get your blood pressure measured at least every 6 months and treated if it is high. Please ask your GP practice to arrange this.
Starting new medications
If you start taking any new medication (either prescribed, over the counter, or herbal), check with your doctor or pharmacist if this medication could potentially prolong the QT-interval.
If the answer is yes, arrange a 12-lead ECG before you start taking the medication. This will then need to be repeated in 3 days and 1 week after. Please arrange this with the prescriber or your GP and bring this information with you for their guidance. The drug will need to be discontinued if the QT interval increases by >60ms and/or exceeds 500ms.
Lifestyle, exercise, and sports participation
In view of the risk of early heart disease, you should take regular aerobic exercise and try to attain/maintain a normal body mass index (BMI). If you smoke, please try to reduce or give up.
Your level of physical activity should be considered based on the findings of your heart evaluation. Your cardiologist will be able to tell you which sports activities should be avoided.
Warning signs: When to contact emergency medical services
Contact emergency medical services immediately if you have sudden and severe pain in your neck, chest, back, or abdomen. Inform the doctor or paramedic that you have TS and therefore must not be discharged from hospital until it has been definitively proven that there is no evidence of an aortic dissection.
Pregnancy
Unplanned pregnancy in women with TS should be avoided. This is associated with significant risks. You should discuss with your endocrinologist if there is any chance of you becoming pregnant and the appropriate contraceptive options available. You might currently be on a patch or oral hormone replacement therapy; however, these do not serve as a contraceptive. Intensive heart and blood pressure screening is recommended before pregnancy, but normal results do not rule out potential severe complications.
If you wish to discuss pregnancy, either spontaneous or assisted, for example by egg donation, ask your endocrinologist or cardiologist to refer you for pre-conception counselling.
If you find out that you are pregnant and this was unplanned, please contact your endocrine consultant via your endocrine nurse as soon as possible.
Contacts / Further information
References
We are smoke-free
Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Other formats
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Contact us
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
CB2 0QQ
Telephone +44 (0)1223 245151
https://www.cuh.nhs.uk/contact-us/contact-enquiries/