What did you do when you were first diagnosed with Klinefelters' Syndrome?

Posted , 5 users are following.

When I was first diagnosed there was no internet, there was only library book information, and what my doctors a said.  It never dawned on me at that time to try to find others with the same condition.  I just wondered where they all were since the incidence of the most common karyotype that can lead to KS was so high?

I'm amazed these days when I see new people arrive on the internet  who know nothing of KS, of course, becasue they're newly diagnosed, and they often set out to form some kind of support group, or 'social media' group.  

They seem to be very keen on teaching people about KS, even though they don't really know anything, except what their doctors have told them and what they've gleaned from library books.   biggrin

Library books, they should be better written!   By the time something gets printed and put in the library, it's out of date!

I was diagnosed for 18 years before I set about finding other XXY guys.  I guess I'm, just slow.  rolleyes 

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  • Posted

    Hi Graham,

    Firstly thank you for your kind words about my previous post/reply.

    I only got diagnosed by sheer fluke, my best friends girlfriend from New York said it was all the rage for young men to get a sperm count in New York. She had clearly noticed that my interest in girls was not noticeable. So I contacted the Brook Advisory Service in London's West End and they sent me to the Middlesex Hospital Endocrine dept on a Saturday afternoon where I met a nice doctor who did all the tests and, after promising not to jump off Tower Bridge, told me I had KS and  sterile, which broke my heart at the time, and you never really get over it.

    So I went to my  then GP, showed her the piece of paper with diagnosis and she was clearly narked that I hadn't gone through the proper channels. She said, you've got hair on your arms, haven't you? No, I replied. Hmm she said. Well you'll have to come back next week. The following week she said , ther's no cure for it, you'll just have to learn to live with it.

    Within three years I had found a lady, with a child and got married after a whirlwind romance, and we're together for 12 years.

    i had no support from my GP, shevlikeceveryonecelse didn't understand it , and anyway I was a man so sterility is not so serious.  What a laugh!

    It wasn't until some years after my divorce that I found the KSA online and joined;  therevI found out that my body doesn't produce enough testosterone naturally but one could get it on the NHS, then I had to persuade my new GP. I might as well have been talking Greek to him for it took five years to get referred to an endo then get prescribed T in gel form of Testim that was 27 years after my first diagnosis. Puberty completed aged 64....I got acne, my chest expanded by nearly two inches, my voice deepened or broke, body hair appeared and I became more assertive but of course T is converted by the KS body into Oestrogen but that is another story for now I have reduced my dosage of T to ease pressure on my heart

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    • Posted

      Sorry about the typing errors, my constant neighbourly hacker makes posting difficult at times. He is one of those halfwits who thinks it is clever to interfere with my posts, which you notice is not happening now because that is how abject cowards work.

      Apologies,

      John

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  • Posted

    Honestly I wont lie to you. I was told that I have this disorder not even 5 months ago, and the moment that the doctor told me, I turned to my dad and said I don't want to live anymore...I know it sounds like I might have overreacted in that moment but my life has never been easy. Depression, Self Harm, Anxiety, Suicide attempts the whole nine yards. I don't know, I just wish I could have found out about this before all the decisions I made. But its no one's fault but my own for not speaking up. But I guess for the next two years i'll spend getting the most out of life.

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    • Posted

      I'm so rapt you replied, you're still here, good, keep it up!   You made me very worried.

      I agree, the medical profession seems to not give a toss about us, we're just regular guys who turn out to be infertile, so we should be humping everything in a skirt and have no worries,  but my life wasn't like that at all.

      My issue were 'How do I get a normal looking body?'  'What woman would want me?'  'How do I form a relationship when I know I'm infertile?'     Just today I read an account on YouTube where the KS man was deceiving his G/F and not telling her he has KS, in case she leaves him.  So all he's doing is putting off the inevitable.  I don't think that's a very smart idea, a relationship cannot be maintained with a lie.  If we're to find a partner we're going to have to be honest, and we're going to have to get used to rejection, and not flip off the deep end.

      I wish everybody was diagnosed at birth.  It's a very easy test, a barr body test, to see who might need further testing, a karyotype, and that way we have a lot more time to get used to it, as do our families. Also those infants who show delays, or edcuastional difficulty can be helped.  For us early diagnosis can only be a good thing.

      This is not the time for blaming, you need to be kind to yourself. You deserve kindness.

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  • Posted

    Hi I was told I had Kline she when I was 40yrs old and I started looking into it.it started to make sense of what I had been through all my school life,and that I couldn't have kids which was a big blow to me,then I nearly died of blood clots.then I got diabetes and osteoporosis in my spine.the coating on my teeth went and I've had most of them pulled out.impear shaped to,I wouldn't wish this syndrome on any one it's made my life hell

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    • Posted

      What therapies have you undertaken?   I have met pear shaped XXY guys in my life, but they chose that shape by refusing testosterone therapy.   One of them even approached me to tell me how wrong I was for advocating testosterone for teenage XXY boys, as his father had died of prostate cancer, and testosterone agrovates prostate cancer.  Of course prostate cancer is an older mans disease, and I don't see why XXY boys should be deprived of a sex life just because of some future event that might not happen.  That seems like a sacrifice too far.

      I lost all my teeth by 40, they started imploding two years earlier which was disconcerting.    

      I can think of a couple of people I'd wish KS on, unfortunately they already have it.  redface

      I find, as time progresses, and problems resolve, that life gets better.  I also know XXY guys who had no difficulty educationally, got good jobs, found women who already had children, and seem to be enjoying their lives.  One I was at a Polytech course with, that was amazing to find out he was XXY too.  I didn't know it at the time, he tracked me down earlier this year,  after seeing my name pop up on some forum somewhere?

         

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  • Posted

    HI  xxy guy

    Hi I live in NZ and back then when I was 20 yr old it was talked about me  Being KS BUT Nothing was done about it for me  All the test went via My wife but As I say nothing for me even when they found out that I was sterile ,And I all ways New that I was different right up untill I was 66 yrs old when I spoke to aw plastic Surgeon and he said that My symptons sounded like Klinfelters syndrome and I was tested with a blood test and sure  enough I'am 47 XXY /48xxxyy 49xxxxyy so I are a lot more female in me that the eye can see . And with the DNA testing now we are lucky to have this test as if we didn't have D N A we would still be in the dark agers  Since back in 2011 when I found out that I are 47 XXy I have been on testosterone  I used to take capsuls re 7 per day but with all other pills that I was takeing it was to much for me to handle so now since 2014 I have a injection in my rump every 12 weeks 3 months and they take bloods at 11 weeks and if level is OK I have the jab at 12 weeks  But I have been noticing lately that as the 11 weeks get near I are very  ratty as in short temmpered so roll on 11 weeks 

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    • Posted

      Oh yeah I've heard of that happening to others, them not being told that they have KS or why they're sterile.  It sounds outrageous, but it's not unheard of.  

      If you're XXXYY in some cells, that's 49, and if you're XXXXYY in some cells that's 50, are you sure you're 47&49&50 mosaic?   

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    • Posted

      Yes I might of got it all wrong BUT Hear is as close as I can get from the Laboratory : This Patient  has an abonomal mosaic male  Klinefelter karyotype From 60 cell examinded 49 cells ( 81.7% ) had a karyotypeof 47xxy two cells(3.3% ) were 46 xx,one cell (1.7%) 48xxxy,and the remaining 8 cells (13.3%) had a 46 xy karyotype.The major cell line observed is associated with Klinefelters . I sorry if I have confused u 

      I just know that Iam different to other men and all the men I have been with  say the same about me you are a weard man they say,  As for the things I do to my self But I not going to tell you on hear you'd have to pm  me or email me if you want to know  Cheer's Guy xxy 

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    • Posted

      If you're quoting the actual genetic report, you got it completely wrong, at least the numbers add up right.  biggrin

      My question is about what people did when they were diagnosed, not asking about their intimate private lives, so you can keep your privare details private.

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    • Posted

       OK All I kept saying WHY WHY has it taken so long for anyone to find out that I have KS  With all the operations that I have had in my klife no one ticked the wright box as in a blood test for Chromosomes or Testosterone . Now you ask what did I feel like when I found out about K S WEll I was very pleased to find out the truth about my sole And now I fully understand why I are like I am I have come from a very shy boy to a out spoken man, And now since I have been on T I can stand up for my self better then back then  I didn't go and celerbrate as that would of been a wast of money  Doewse that answer your Q 

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    • Posted

      Blood tests are not the first tests, the first action is to palpate the testes, and if they're the right consistency then blood tests should follow.  The reason I say males in puberty don't have their genitnitals checked is because most doctors are male and have no interest in male genitalia.   It may surprise females that their doctors have a sexual interest in their genitalia, which is their primary reason to look?

      If that's not the reason XXY's are usually not diagnosed, what is?

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    • Posted

      Well I had blood test first ... And  it wasn't tell one year later when The Endocrinologist felt my balls and said that they are very small And she was a loverly blonde girl at about 35 yr old  And she injected me with theT and I didn't feel a thing  So that is how I was disgnosed  So be it ...

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