Patient Comments: Klinefelter Syndrome - Treatments


What was the treatment for your Klinefelter syndrome? Submit Your Comment

Comment from: gabastu72, 35-44 Male (Patient) Published: April 14

I was diagnosed with Klinefelter syndrome at 19. I am now 42, and a type 2 diabetic. My penis stopped growing in my early teens, I have zero self-confidence, an ex-wife, and I have had one disaster after another. With Testogel I don't really notice much of a difference. I had tissue removed from my chest 20 years ago but they have grown back. Now medical issues are getting worse, for sleep I need sleeping tablets, even then I am awake more often than I sleep. Now I have nerve damage in my feet and legs. I am a recovering junkie and I suffer depression, I live in pain from headaches to shooting pain in my legs and feet.

Comment from: Sixdash8, 55-64 Male (Patient) Published: January 05

I was discovered to have Klinefelter syndrome at age of 19 in 1973. I have been on various testosterone treatments from shots, gel to gel patches. I was six foot, eight inches tall at 19 but weighed only 173 pounds. I find that eating healthy, keeping alcohol intake down, and not smoking helps. But I am also on medications for LDL vs HDL ratio being off, Paxil which helps with mental stability and managing pain, and with type II diabetes I have to also be in control with diet.

Comment from: Cynex, 25-34 Female (Caregiver) Published: January 04

The issue with any hormone therapy for Klinefelter syndrome is that no human is lining up to donate their hormones so what you are receiving is either hormones extracted from animals or synthetic hormones and either version is not good for our body and likely the cause of anything from cancer to stroke and so on. Please be your or your child's best advocate.

Comment from: Lab Rat, 65-74 Male (Patient) Published: July 28

For Klinefelter syndrome I had two hormone shots when I was 14 or so and a prescription for testosterone, which I still get.

Comment from: Foxy, 55-64 Male (Patient) Published: May 06

I was diagnosed when I was 42, while waiting for spinal surgery. During my school years, and even today, I have always been a loner. When I was about 15, I had chicken pox and mumps straight after each other, and this was thought to be why I had no sperm count and small testicles. I stopped growing at 19 and am 6 foot 7 inches. All through my life I have had mixed feelings and attractions on sexual matters. I married in 1985 and adopted two children with Down syndrome. I am presently 59, and although during school years was deemed a dreamer and not allowed to go on to higher learning at school, I received a Bachelor of Arts in 1998, and now am a manager. So, if you have XXY, accept it and then enjoy the ride.

Comment from: Daks, 35-44 Male (Patient) Published: April 15

I was 26 when I was diagnosed with Klinefelter's syndrome. Little did I know what it was. First, it was injections, then patches, then implants. By far, implants worked much better than anything. Now I'm on Axiron. I apply it twice per day under my armpit. It works much better and quicker. I have fewer migraines and a better sex drive, as well.


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