Ian,

Sorry to hear this.

In adult males, testosterone mostly comes from the testicles, rather than the adrenal glands. If your T count is low, there may be a problem with function in your testicles.

In a male with CAH, this is often due to poor control. The adrenal glands and testicles are connected via a feedback loop. In a nutshell, if the adrenals produce too much testosterone, the testicles may compensate by producing too little. In addition, CAH males are also prone to developing adrenal rests, which can also cause low testosterone levels. Did your doctor check you for these?

Below is a link to an article about long-term outcome in adult CAH males. I have also highlighted an excerpt that specifically addresses this issue.

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http://jcem.endojournals.org/cgi/content/full/86/7/3070#T1

Elevated adrenal androgen secretion in male CAH patients may suppress the hypothalamic-gonadal axis with resultant small testes and decreased spermatogenesis (11, 12, 13, 14). In addition, male CAH patients frequently have ectopic testicular adrenal rests, which may become hypertrophic under chronic ACTH stimulation. The clinical manifestation of testicular adrenal rests includes increased testicular volume and the presence of multiple firm, tender nodules. It has been suggested that these nodules gradually expand and destroy the testicular parenchyma, resulting in low testosterone production and infertility (8, 15).