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Hopeful

Posted , 4 users are following.

Pip999
Pip999

hi are there any one that as got Kline filters syndrome .and how does it effect you

0 likes, 7 replies

7 Replies

  • john47034
    john47034 Pip999

    Posted

    Hey I have it and it effects me with how I'm feeling on a emotionally level... I can't get sad or I break down, (there's not middle ground) so I just stay happy all the time. I have injections on a 10 week cycle and if I don't I have no energy at all. The last 2 weeks before I get the injection I feed down on energy but I hear some people use some test* creams so that doesn't happen ..

    I also have a really high sex drive all the time which is a good thing haha

    But atm I'm starting to bald now from taking the injections so there's plus's and negatives

    • Pip999
      Pip999 john47034

      Posted

      Hi there do u have diabetes.i do and reacurring blood clots,pear shaped,brittle bones,i have no feelings in my feet or legs and they say its all due to this sydrome and carnt have kids.they only found mine when i was forty
    • john47034
      john47034 Pip999

      Posted

      I don't have diabetes sorry to hear that you do. What do you mean by pear shaped? I found out when I was 18 and I dunno if it's any better when your younger or older but it definitely should be a more tested someone when they are much younger then 40 or for me when.. I went to the doctors asking them what was wrong with me? And that took a lot of guts for me to ammit I was different to everyone else. While I was 17 I broke 7 bones and my bones didn't heal, they just created athristes* and froze over the joints lol

    • Pip999
      Pip999 john47034

      Posted

      Hi ive got wieght arround my belly but my legs and arms are thin. does klines afect u in any other way. can i ask how old u are. kline felters sydrome as made me very ill i carnt even work
    • john47034
      john47034 Pip999

      Posted

      Oh yen i have always had a gut but.I'm skinny everywhere else.. I'm 24 years old .. it effects the way I think. I zone out a lot but I just let my boss know that I had it and she is very understanding of when I'm crazy full of energy and when I feel down and so on. Have you started taking any form of treatment?

  • XXYGuy
    XXYGuy Pip999

    Posted

    I see I have a little orange dot to my right, flashing, indicating I have messages and notiofications.  

    It's hard to say what affects me by being treated to prevent KS from showing.   KS being the symptoms of another disease.  That disease I don't strictly have as I had my testes amputated, but the therapy remains the same.

    I think the inactivated X has far reaching, and ongoing,  effects that are not very well understood by most, and doctors especially as they want everything to be nice, and neat, and tidy, but life rarely is nice, and neat, and tidy.   

    I say being XXY has endless grief, regardless of how well we each manage to fit in with society.  

  • XXYGuy
    XXYGuy Pip999

    Posted

    Before I was diagnosed and living in London, I couldn't get swimwear to fit me, unless it was womens swimwear, and that was just depressing!  Years later after I was diagnosed in 1975, before I had the karyotype, I could fit the smallest size youth jeans, I was really skinny!   After I began hormone therapy, about a year after and for years and years, I could fit the largest size youth jeans, even when I was legally an adult.  I stayed really skinny for a really long time.  I hated it and would often complain to my Endocrinologist about how skinny I was.  I could just never gain weight, not muscle, not fat, not anything.

    My GP's Nurse even wrote me a high protein diet.  It didn't work.  I developed a major interest in cycle racing. I enjoyed the fellowship, and the training, but I never won a single race.  I just didn't have the strength or stamina to last.  If only I knew then what I know now.  I'd have massively overdosed what was considrered normal therapy for XXY males, and I'd have eaten much more, and I might have even won a race?

    Education is definitely the problem.   Now I'm too old to make use of the information I've gained.  Oh well, maybe the next generation of doctors and XXY's will fare better?

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