After multiple years of appointments, referrals and diagnostic tests without answers I am now resorting to the internet.
In 2019 I noticed a complete lack of sex drive, after a couple of months I realised this isn't normal for a 22-year-old so I went to the doctors and had some blood tests. These tests revealed an extremely low testosterone of 43 ng/dL (1.5 nmol/L) and extremely elevated LH and FSH (21.2 iu/L and 48.4 iu/L, respectively) indicating primary gonadal failure (testicular failure).
It's been 2 years since then and overall my symptoms have improved, however, my testosterone levels (and the associated symptoms of low testosterone) rise and fall in 'cycles' of between 3-6 weeks. I experience periods of 'normal' testosterone level (within the normal range) which is then followed by a period of low testosterone (towards the lower end of the normal range). In these periods of low testosterone, I have the following symptoms: no morning erections, decreased libido and slower facial hair growth.
All of the specialist endocrinologists I've seen are baffled and can't provide any explanations.
I've currently had genetic/chromosomal tests to rule out any genetic abnormalities, testicular ultrasounds, digital rectal examination, MRI scans to investigate potential pituitary abnormalities/tumours and LHRH tests to assess pituitary function. None of these tests have shown any abnormalities. The only abnormality that they have found is a very small varicocele (too small to remove) and an epididymal cyst on my right testicle.
Blood tests throughout the years (with the exception of the first blood test displaying extreme testosterone, LH and FSH) show that my LH and FSH are consistently at the extreme low end of the reference range (LH average = 1.3 iu/L and FSH average = 1.2 iu/L). My testosterone varies from an average of 12 nmol/L (350 ng/dL) in periods of low testosterone to an average of 21 nmol/L (600 ng/dL) in periods where I feel fine.
The duration of these periods varies greatly, they can last for as little as 3 weeks or up to 6 weeks.
I have tried monitoring absolutely every aspect of my life to try and identify what is causing it. I eat very healthy, take vitamins including zinc and vitamin D, eat enough healthy fats, work out and get at least 7 hours of sleep a night. I'm of a healthy BMI and drink plenty of water. I know for certain I am not getting any exogenous testosterone in my system through skin-to-skin contact with someone using hormonal gels (currently don't have a girlfriend). I drink once a week with friends, but I've quit alcohol for 6 months and nothing changed, I still went through the cycles of varying testosterone levels.
Does anyone have any ideas? I've now officially been discharged by my endocrinologist as they have no idea what to do or what other tests they can do. It's been going on for so long and I just want answers, it's exhausting.