Kallmann Syndrome & Osteoporosis

Please excuse me using my own video clip…!!

One side effect of having Kallmann syndrome or hypogonadotrophic hypogonadism is the increased risk of developing osteoporosis or “brittle bones” at any stage in life. While osteoporosis is normally associated with post menopausal  women in can affect both men and women with KS or HH at any age.

The condition is caused by low levels of testosterone or oestrogen. This is especially the case in untreated KS / HH. Oestrogen and testosterone are required for bone strength and density. A lack of the hormones can cause the bones to become weak, more liable to fracture and take longer to heal again. Full blown osteoporosis is a painful, debilitating condition.

Most KS specialists recommend a DEXA / bone density scan once every 5 years at the very minimum, possibly once every 3 years. If you are in the high risk group and known to have a oestopenia already then the scan should be yearly.

DEXA scans are essential for people with KS. Some doctors tell patients that if they are on continuous testosterone / oestrogen treatment then DEXA scans are not required. While it is true that being on constant treatment will lower the risk of developing osteoporosis you can not be guaranteed that the testosterone / oestrogen levels are high enough throughout the treatment period to reduce the risk enough, plus you also have to factor in the length of time pre-diagnosis that the patient went with low oestrogen / testosterone levels.

DEXA scans are not the same as bone age x-rays which some people have as part of their diagnostic work up.

DEXA scans are very simple to perform, last less than 5 minutes and involve lying on a bed while an x-ray is taken of your hip and spine.

Regular scans with provide an indication of the strength of the bones over time and if there has been any serious reduction in density.

Some people with KS / HH will require additional medication if they are found to be at a greater risk of developing osteoporosis (osteopenia).

Vitamin D supplements have been shown to increase the risk of osteoporosis.