Survey for male KS / CHH patients on fertility treatments.

Link to Google Docs Survey

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A team of endocrinologists at Imperial College in the UK are planning a large study to look at fertility treatments for male KS / CHH patients in order to establish best practice guidelines.

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As part of this study they have created this short survey for any KS / CHH to complete to pass on their experiences and opinions on fertility treatments. They want to know the issues and questions male KS / CHH patients have on fertility treatments.

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No medical information or personal information is required, they just want to hear patient views and opinions on fertility treatments to help them plan the full study. All male patients can take the survey, regardless if they have had treatment or not, or where they live.

How is Kallmann syndrome / CHH diagnosed ?

There is no gold standard single test for Kallmann syndrome / congenital hypogonadotropic hypogonadism (CHH).

Diagnosis is often made by excluding other possible conditions that could affect puberty or fertility

Standard blood tests would include:

1. Testosterone or oestrogen / progesterone

2. LH

3. FSH

4. Prolactin

5. SHBG

6. Vitamin D

Other tests could include:

MRI to examine the size and structure of the pituitary gland and check to see if olfactory bulb is present.

Smell identication test.

Wrist x-ray to determine bone age.

DEXA / DXA bone density scan.

Hearing test.

Neurological exam to check reflexes.

Genetic testing may be undertaken whch can help in some cases, especially if there is a family history of the condition but not all cases of Kallmann syndrome / CHH can be identified through genetics.

What is supposed to happen at puberty......

Kallmann syndrome is a known as a secondary hypogonadism condition.

This means the problem is with not with the testicles / ovaries themseleves but with the production of the hormones that should have been released at puberty.

One key hormone called GnRH.

GnRH is not released correctly at the time puberty is due.

In turn this prevents the pituitary gland from releasing two hormones called FSH and LH, collectively called gonadotropins.

Without these gonadotropins the ovaries and testicles remain dormant, puberty does not start or fully complete and no reproductive cycle is possible.