I'm depressed about my Klinefelter diagnosis, what should I do?

Posted , 2 users are following.

I am a grown man and I'm very depressed about my Klinefelter diagnosis. i got tested for it and the test result came up negative. i do NOT have klinefelters. I do not understand!? how can this be? I match every symptom! I have the all the behavioral problems like learning disability, problems with english and math, language processing disorder, adhd, developmental delays, socially awkward, poor social skills even though i am very friendly. i have all the physical problems like osteoporosis, high myopia, impaired motor skills, poor muscle tone (i cannot lift over 35lbs), taller than average, and gynocamastia. I also had delayed puberty. I saw the first signs about 2 months before turning 17. I also suffer from incomplete puberty as well. I have very little body hair, arm hair, leg hair, and facial hair. My facial hair is so little it is often mistaken for dirt. I have also NEVER shaved my face. I only have a tiny bit of pubic and armpit hair. My voice never changed, instead it got deeper gradually. Even though I am an adult male and have been for many years people still think i am a 15 year old boy. I have very small testicles and my penis is less than 2 inches. i rarely get erections and i have never had a "wet dream". i also have 0 sex drive. although i am attracted to females, i am not attracted to them sexually. i am a virgin and want to be like that lifelong. i like hangin out with girls that are 10-13 years old better than grown women because it seems like all grown women want are romance and sex which i do not feel either. I understand i am a grown man so i cannot be in a physical relationship with a 10 11 12 or 13 year old girl but i dont desire a physical relationship with anyone. i like hangin around with girls but i dont want to talk about romance or fashion, i wanna talk about gaming, movies, youtube but i cannot find a grown woman that wants to chat about these things they only want ROMANCE! The only symptom of Klinefelters that I do not have is the antisocial behavior. I am a VERY friendly person and make friends easily. I am socailly awkward and i do have poor social skills but i love making friends and I cannot get enough social interaction. When i was little my parents tested me for aspergers but that came up negative and thats totally unlike me. I am the opposite of aspergers people. I have low ambition and low motivation, i dont have a problem with eye contact, i am very very friendly, i do NOT excel at english or math, i am not "obsessed with anything", i dont care for repitition, i can read social cues just fine, and i do not have a superior IQ. I do like to talk about myself a lot though and sometimes struggle with back and forth conversation but I dont freeze up. I am also a very easy going guy, and happy most of the time and i have got a tremendous patience level but i got very depressed when i found iout i did NOT have Klinefelters. i always knew there was something different about me and something that made me act like a much younger child and something that made it hard for me to play sports and learn at age level but when i was about 11 i heard of Klinefelter syndrome and all these years ive been so confident. I was overjoyed to finally get the medical treatment to pay for my diagnosis and while i was waiting to hear back from the doctors i planned to be a HUUUUUGE supporter for Klinefelter syndrome but when i got the letter that said I did not have it and my chromosome type was 46, XY i was so disappointed that i was not a Klinefelter man and what i had assumed all these years was wrong and there is something else wrong with me. If it is not Klinefelter Syndrome what could it be?

0 likes, 3 replies


3 Replies

  • Posted

    Your symptoms do sound a bit like Kallmann syndrome, which shares many common symptoms as Klinefelter syndrome but has the opposite cause.

    Do you know your blood test results for the hormones LH and FSH. They should have been tested at the same time as your testosterone.

    Low testosterone, with very high LH and FSH is a sign of Klinefelter syndrome.

    Low testosterone, with very low LH and FSH is a sign of Kallmann syndrome.

    Kallmann syndrome also produces very little to no puberty.

    Do you have a normal sense of smell ?

    Report Reply
    • Posted

      this reply is to ndsmith38 i dont know how to use this website so i hope you get my message. i dont know what lh and fsh but i never got my hormones tested. I have reached puberty but it seems like i stopped at an average 13-14 year old boy. and now that you mention it I do NOT have a normal sense of smell. i cannot smell when dinner is cooking nor do i ever smell myself or other peoples body odors. i am always afraid i might have bad breath because i can never smell it! i can only smell really strong scents like skunks, gasoline, paint, sharpies and they smell pleasent to me. I am going to read up on Kallmann syndrome and see what i find thank you for the reply. If you want to talk more i am very interested in what you have to say and i love online chat so feel free to send me a message anytime:)

      Report Reply
    • Posted

      The fact you have no sense of smell makes a diagnosis more likely. Your list of symptoms fit Kallmann syndrome totally.

      Kallmann syndrome and Klinefelter syndrome do have common symptoms but they are totally different conditions.

      You will need to an endocrinologist; a doctor who specialises in hormone conditions. Make sure you mention you have no sense of smell, along with the other symptoms you mention.

      A blood test for the hormones LH, FSH and testosterone would show very low levels for all three of them if you have Kallmann syndrome.

      If you have a poor sense of hearing or problems with your teeth mention that to your doctor as well.

      If you look on Reddit, You Tube or Facebook you will probably find infomation I have posted about Kallmann syndrome.

      Report Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up