How do I get tested for hht?

If you do not already have a family member who has be diagnosed with hht but feel you may have the symptoms of hht, talk to your doctors. Describe to them the symptoms you are having and why you feel it could be hht. Remember some doctors will have to look into hht to be able to give you an answer as to if you should be referred for further testing.GP's train to cover a broad spectrum of conditions so can not always know all information about any one condition.


If you already have a family member who has been diagnosed, then ask them if they would mind photocopying the letter they received from their specialist. If this was in genetics identifying the familial gene mutation, this will make it easier for you to be tested. Make an appointment with your doctor, take along the photocopied letter and ask to be referred for further testing. About 20% of people with hht have an unidentified gene and will need a clinical screening to identify hht.