Good News for Kallman Syndrome’s Stigmatized Treatment

Kallman syndrome is a rare genetic condition that either delays puberty or stops it entirely. Its symptoms include a lack of secondary sex characteristics– pubic hair that doesn’t appear, testes that don’t descend, a voice that doesn’t deepen, breasts that don’t develop, menstruation that doesn’t begin.
Kallman syndrome is unique from other conditions that affect puberty, because it’s also characterized by a lack of smell. Additionally, it may cause kidney problems, hearing loss, and infertility. Kallman syndrome occurs in all sexes. However, since it’s inherited on the X chromosome, males are predominantly affected. To learn more about Kallman syndrome, click here.

Many patients with Kallman syndrome decide to treat their symptoms with hormone replacement therapy. Women may receive estrogen treatments, whereas men may receive testosterone. Testosterone is a steroid hormone, famous for being the “male” hormone– causing hair growth, muscular growth, aggression, and sexual function. It’s also important for urinary health and metabolism. It increases at puberty, and begins to decrease in old age.

Many people have expressed questions and concerns about the longterm effects of receiving testosterone for an extended period of time. Some believed testosterone could cause negative effects to the urinary system, damage the prostate, and increase risk of cardiovacular disease.
Researchers from Boston University and Germany worked together to investigate what longterm effects of testosterone replacement were. Did they benefit a patient? Did they harm them?

The study observed two groups of men with insufficient testosterone levels. One group opted for treatment, which they received in intervals for up to 10 years. The other group opted to not participate in hormonal therapy. Going into the study, there were some baseline differences between the men who had or had not received hormonal therapy. To compensate, researchers selected 82 men from different groups, who matched in terms of different baseline factors. They were, however, unable to control for International Prostate Symptom Score (IPSS).

The researchers found that, with treatment, testosterone returned to normal within just a year. After that, it leveled out.

As the study ran, the men in the treated group showed decreased moderate prostate symptoms, although mild symptoms increased. Although prostate volume did increase in the treated group, it did not result in urinary health issues. The control group, in comparison, rose in both urinary and prostate health issues. The treated group also fared better when it came to a decrease in erectile dysfunction, and improved quality of life on the Aging Males’ Symptoms scale. Essentially, this study provided evidence that testosterone treatments improve health and quality of life without significant harmful effects.

The treated group showed no major health complications, whereas the untreated group suffered 5 deaths, 8 non-fatal strokes, and 8 more nonfatal myocardial infarctions.

One researcher, Dr. Traish, reports to Medscape Medical News, that this runs contrary the claims that testosterone leads to cardiovascular disease. He explains it like this: testosterone levels peak in the bodies of 22-45 year olds. If testosterone led to cardiovascular disease, than why aren’t 22-45 year old men constantly dying of heart attacks?

Dr. Traish believes the studies are clear; testosterone therapy is a great tool to help men who suffer from testosterone deficiencies. He says opposition to testosterone therapy isn’t based in science, but rather social stigma. Throughout cultures, the word takes on a societal taboo, and people are more hesitant to come around to it. He says that if we replaced the word “testosterone” with a different name, there would be more acceptance of it.

Overall, this study is useful and optimistic news for Kallman syndrome patients contemplating testosterone treatments. Based on this study, the treatment can improve not only health, but life in general– without serious side effects.