What to expect

Not knowing what will happen at a doctor’s visit can be stressful for some people. This is a general guide to what may happen during a visit for an evaluation of hypogonadotropic hypogonadism (congenital hypogonadotropic hypogonadism, idiopathic hypogonadotropic hypogonadism, Kallmann syndrome).

You will be asked questions about your growth and development and your past medical history. This will include past surgeries, hospitalizations, and medications. You will also be asked about your pubertal development:

• For women: age of your first menstrual period and timing breast development
• For men: a history of undescended testes, acne, shaving, erections and ejaculation

You will be asked about the health of other members of your family and if there is anyone with problems with puberty, inability to smell, or other signs associated with hypogonadotropic hypogonadism:

• 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

You will have a full physical examination including body measurements, such as height, weight, arm span, and a genital exam. You may also be given a smell test.

• You will have a blood test to measure hormone levels.
• You may also be asked to have additional tests to check your pituitary function. During these tests you will be given an injection of a hormone and have your blood drawn to see if your body responds normally.

You may be asked to have some of these tests:

• X-ray of your wrist for "bone age" to see if your bones are still growing
• DXA (dual energy xray absorptiometry) to assess the density of your bones
• MRI (magnetic resonance imaging) to visualize the pituitary and hypothalamus
• Ultrasound to see if you have both kidneys
• Young men may have an ultrasound of their testes
• Young women may have an ultrasound of their uterus and ovaries