What to prepare for your visit

The diagnosis of hypogonadotropic hypogonadism (congenital hypogonadotropic hypogonadism, idiopathic hypogonadotropic hypogonadism, Kallmann syndrome) is diagnosis of exclusion. This means that the other causes must be evaluated. In younger patients it is important for your doctor to determine if puberty will start naturally or if treatment is required. You can assist your physician in this process by doing the following:

This includes records from the paediatrician or family doctor and growth charts which show how you have grown during childhood. Also include reports, imaging tests (xrays, ultrasound, MRI) or blood tests that have been performed.

It is important to know if other members of your family had a late puberty, problems with fertility, no sense of smell, or other health problems such as:

• Deafness caused by nerve deficiency
• ‘Mirror movements’ of the hands (also called synkinesia)
• Dental abnormalities (such as.missing teeth, crowded teeth)
• Facial abnormalities such as cleft palate and/or cleft lip
• Absence of one of the kidneys

It will be useful to know when your mother had her first period and when your father started shaving. Health issues are often personal matters so you never know until you ask about them.

It can be hard to think of questions during a visit. Think about what questions are important for you and write them down. These can help you have a conversation with your doctor and better understand your condition.

• What are my treatment options?
• What are the benefits and risks to these treatments?
• What physical changes will result from this treatment and how long will it take?
• Can any counselling be made available as part of my treatment?
• What can I do manage other possible health problems related to my condition (for example osteoporosis)?
• Will I have normal sexual life?
• Will I be able to have children?
• Are diagnostic tests and treatments covered by my insurance?