I'm a trans woman wondering if I'm intersex, and wanted some advice on what I should look into.
I currently don't know what my hormone levels were before starting HRT, but during it my T levels were always below 0.4 nmol/L (11.5 ng/dL) and I was set on a very low dose of anti androgens (which i probably didnt even need, in hindsight). My estrogen levels have also been on the low side, so the low T is not due to high estrogen. I'm currently post bottom surgery, and my T levels are so low I'm being recommended to start on a small amount of T in addition to the E I take.
My first puberty (the testosteron driven one), started around 13-14yr, and I was shorten than other boys. I'm suspecting I might have had a micropenis, although it's difficult to know / remember as I am post op. It also caused a problem during surgery, as there was not enough tissue for penile inversion. The genitals were not otherwise ambiguous.
I am short (5' 5") and have normal body proportions, so I don't think I have Klinefelter Syndrom.
Are there any test you can recommend? Also, do you know which other conditions causes low T levels?
There's definitely quite a few intersex variations associated with traits like low testosterone and micropenis.
I'd honestly say it's still worth looking into Klinefelter's Syndrome-not everyone with Klinefelter's ends up having the associated height symptoms, and that's one of the most common intersex variations associated with low testosterone. If you had any other symptoms like developing breast tissue before you want on estrogen, undescended testes, things like osteoporosis, or flat feet, I would definitely recommend still looking into that. In order to get diagnosed with Klinefelters, you would need to get karyotyping done where they analyze your chromosomes and figure out if you have XXY chromosomes.
Another intersex variation that can cause low testosterone is Leydig cell hypoplasia (LCH). Leydig cells are cells in the testes and with LCH, they secrete lower levels of testosterone. Micropenis and hypospadias are associated with LCH. Depending on the severity, people with LCH might go through some aspects of a testosterone based puberty but might not have their voice drop, grow as much body hair, or facial hair. From what you've shared, it seems more likely you would have Type 2 LCH rather than Type 1, since you did go through a testosterone based puberty. It looks like the testing for that would require an hCG stim test and then a confirmation of the diagnosis through biopsy of the leydig cells, so you might want to rule out other diagnoses before trying to get tested for LCH.
It might be worth looking into 5-alpha reductase deficiency and 17-beta HSD, which are both intersex variations where your body does not have one of the enzymes necessary to synthesize testosterone, but those variations don't seem quite as relevant to your experiences, since you have low levels of testosterone and didn't have excess levels of estrogen.
There are a few more possible intersex variations that could cause low testosterone, but they're a lot rarer and I think it would probably make more sense to look into these variations first. The next step would probably involve getting some blood tests to check your chromosomes and other hormones, and it might be helpful to try to get a referral to an endocrinologist. Definitely feel free to reach out if you have any other questions, and wishing you the best of luck in this journey!
