What does it feel like to have Klinefelters' syndrome?

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Another contributor wishes to discuss what it feels like to have Klinefelters' syndrome, so I thought I'd start a discussion on that topic, see what comes of it?

I'd like to be able to choose XXY as a place to put this discussion, then we can chat about what it feels like to be fat, or to have gynaecomastia, or to be sterile, and any other disease associated with being XXY.

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  • Posted

    I know from my husband that he seems resigned to being fat. He sets his weight goal at 2:20 and stated that he if he went below that he would die. This was before   I found out on my own about his condition. I believe he uses the fat to cover up his condition to the outside world, so being fat works for him. When I lived with him, he lost 35 pounds, and admitted to feeling better. He still looks like a mail, because he has always dressed like a mail. There's enough bulkiness around his middlethat no one would suspect it. However his shoulders are extremely narrow. That's why he always wears men's shirts ever since childhood.shoulder pads actually normalize it. I believe he chooses to be fat in order to mask his real self. Because inside he feels terribly defective.
    • Posted

      And blames the propensity on genetics his parents and apparently his condition. However I believe with Graham that it is all under his control, and even though , For example I may have the genetic pre-decision pre-position predisposition for a Pucci abdomen in at an old age like my mother, it just makes me work that much harder to counteract it now. But the point is X ex why people gather fat like a female, however fat acts as estrogen and compounds the problem. There is a healthy middle Road
    • Posted

      Some people despite what is popular at the moment like the size they are, some people like being fat, just as some people like being thin, it's a personal choice with many and they have the right to choose how they wish to appear. And dressing like a male, why women can dress as males and be totally accepted, but are you aware of the attitudes posed towards males that dress in female attire, it's not the same as what women enjoy, where again comes the allusion as towards sexuality and even perversion, though ridicule mostly.
    • Posted

      You know what, that makes sense. It really does. People choose either way how they want to be, even if it's killing them. Espouse really has only the needs of the other in mind. Only the concern for the other person's health. For example, there was Diabesity,heart attack, skin. Ulcers and folliculitis due to staph,hypertension, just overall inflammation anywhere and everywhere includingarthritis a.k.a. fibromyalgia. I attempted to treat through diet and low gluten foods that enhance good fats. Reducing starches, etc. I wanted to care for him, and I gave up my own needs to do it. He finally listen to his doctor and began a regimen of 10,000 steps a day. I was so proud of him! Until I was abused. When I became a victim of his abuse, I withdrew supply. That made me a target for more abuse. If I had known all along that he had this condition, and if he had not defrauded me before being married, I would have approached him with much more understanding. I do believe at the center of my soul that he has a personality disorder. There's nothing I can change about that. Had I known about the condition about the genetic condition, I would've approached it differently. As it is, any criticism were questioning of actions or beliefs is an attack, and he disintegrates. His soul ask like the little bubbles in the transporter machine in Star Wars. His skin feels like it's burning and there isn't even skin on it. He flies into rages and doesn't except any responsibility he excepts no responsibility for his actions   afterward he acts as if nothing happened. Walking on eggshells is no laughing matter for the family when someone is like this. Had I known of his condition, I would've made other choices. That's really sad. Sure, he can go on to be however he wants to be. It wasn't about his own body image. I discuss that with him and I understand his six station on being a certain way considering how he feels about his body frame. I get that. I don't understand or get abuse or compulsive lying
    • Posted

      I'm putting on weight because I'm too lazy to exercise more.  If I did have narrow shoulders and broad hips, that's the way all skeletons look! confused   Seriously I had always been too skinny, even suspected of having Anorexia when I was a prediagnosed teen.  I can recall many arguments over my diet, apparently I didn't eat enough!  I ate untiI was satisfied, that's enough to me.  More recently I started putting on weight when I had 4 heart attacks in one day, those are the heart attacks the others round here think I got because I have testosterone therapy sufficient for my needs.  I like having apronounced larynx, body hair everywhere, muscles, and sex.  I like being physically mature.  That the others in my clan don't like me liking what I have is their problem.  I don't suffer from gender euphoria, I enjoy it! cheesygrin  So males typcially suffer heart disease more frequently than females, and I'm a typical male, just the way I like me.  Maybe I'll lose weight next year? smile
    • Posted

      I enjoy your expressed self confidence!  Do you feel comfortable in your own skin (persistently not caring what others think).
    • Posted

      Hang on, he's not been diagnosed as an XXY yet, where there are other variations to consider along with other diseases of which the XY male is also susceptible to.

      But if he won't help himself by admitting he has a problem, there is not a lot you can do about it, but if you are being abused, then perhaps you need to make your own choices for your own health and wellbeing.

    • Posted

      Persistently not noticing what others think is probably closer, and then by the time I do notice, what does it matter?  
    • Posted

      Men with Klinefelters' syndrome put on weight in the female pattern, as their fat is gained, which is not subject to the influence of testosterone. The same is true for pubic hair, when not influenced by testosterone grows in the female pattern.  All people who grow pubic hair grow it in the same initial pattern, neutral, as pubic hair is under the influence of adrenal androgens.  

      XXY people don't put on weight because they're XXY, if that were true they'd all be very fat babies, and delivered by cesarean section, and then they'd ALL be diagnosed at birth, no problem at all.

  • Posted

    I was diagnosed with KS last year and I'm 53. Albeit I never wanted kids so the fertility (or lack of) never worried me. Currently I'm not taking T because frankly, I've lived my entire life until 2013 as is.  I like other members have been the lanky variety. Try as might, eat anything and everything, I could never put on weight.

    That has changed in the last in the last 3 years, now I have a the fat distribution around the top of my hips, belly and am also (which I really detest) have started to get man boobs. I kinda liked a bit extra weight - something I'd always wanted but could never achieve. However these boobs have to go. I'm going to give the gym a try and see if that can tame them.

    As far as my mental health, I am a positive person, always have been. Glass 1/2 full and all of that.  I tend to have more female friends/buddies than male mates. I've seem to fit into the typical male domain. Where as I get women totally. which is kinda neat cause I'm hetro wink

    All in all I'm still seeking out information. I live in rural Australia and while the Dr's in our town are great, they are not au fait with KS. So I'm not about to start T based solely on their knowledge, which is extremely limited.

    • Posted

      Hi, infertility doesn't bother me as I have a family, why would it?  Of course it did bother me until we did have the kids.  I'd need to know more about your particular circumstances to seriously comment on your frankly statement, I had no symptoms at all as a child, never was very tall, always a was skinny.  I would have looked really weird at 10 with the body shape I have now, I had much less testosterone then than I do now, and yeah I bet I had much more at 14.  Then it started to go down, and had gone down dramatically by the time I was 18.  

      Yes, well most XXY (I presume you're XXY), guys are never diagnosed at all.  So for some reason someone thought you needed to be tested for it, and that had nothing to do with testosterone, apparently?

      I suppose there might be some Australian doctor who knows something sensible about XXY/KS, the information I keep getting from Australians is that their doctors know virtually nothing useful.  There is a video from an Australian Endocrinologist on YouTube that mentions KS, I think?  I don't talk to doctors much myself anymore, if I need their help for anything I'll ask, I just don't see any need right now.

      You can write to me privately for links if you want them.  I don't post them here as the Moderator will hold them up until s/he's decided they're OK, and I can't be bothered waiting.  

    • Posted

      Hi mate,

      Sorry for the late reply, been going through a bit of a roller coaster ride lately, which has impacted my motivation and energy levels. Not sure if it's an XXY thing or my lifestyle (burning the candle both ends) which is catching up on me.

      thank for the input and links sharing, I will take you up on that offer smile

  • Posted

    Hi, I'm 25 yo, and my parents have knew I had klindefelters before I was born. Do you have any direct questions?
    • Posted

      I thinhk you already know I disagree with your parents, as do plenty in the medical profession.  No I have no questions to ask of you.
  • Posted

    This is what having Klinefelters' syndrome feels like for me:

    I think what most people fail to consider in their determinations on how things happen and why is the most basic start point. We all need to remember we are dealing with a life long disease.

    How did you feel when you first found out?

    Can you remember?

    I can remember being different, always, in everything. The diagnosis for me was just another nail in the coffin.

    Do you recall going to doctors saying ‘there’s something wrong, there’s something wrong, there’s something wrong, and hearing back ‘it’s nothing you’re ok, it’s nothing you’re ok, it’s nothing you’re ok?’

    Maybe you can recall instances of when you should have been diagnosed and weren’t? Maybe that happened many times?

    Do you remember the frustration of being told nothing sensible?

    Do you remember being treated like an imbecile? This information is far too devastating, serious, complicated, for a mere patient to understand! You must be kept in the dark, you might even imagine the disease is much more serious than it is, if you’re told anything.

    What does all this cause, all this stuff that goes on around your diagnosis?

    What about when you remember those times, what emotions do you feel?

    Have you known a close relative who has died, or a close friend? How did you feel when you discovered your loss? What is that called?

    That’s called ‘GRIEF’ isn’t it, I’m sure it is. The grief of the loss is very powerful, your mood might even change, you might very sad, cry, maybe even be inconsolable for a time. And as time passes that grief fades and life continues.

    But when you’re diagnosed with a life long disease, your grief remains. You remember all those difficult times associated with your diagnosis, and you feel it again, and again, and again. Regardless of how much you know, and I know, the grief remains.

    If only it can be forgotten about, just do whatever you need to do and never consider it. That would be easy if it were possible to never need therapy. But by the end of the regime you’re on, you remember it all over again. And your mood might change, it might be so regular that you don’t even know why anymore, this is life the way you know it. My life is the only one I’ve had, other people must be the same as me, they must be re-experiencing that initial diagnosis and the emotions surrounding it, over and over again.

    I can be going about my work and thought just pops into my mind of a long lost relative, and I feel the grief of that loss, just for a moment, then it passes. But this disease is a constant, and I remember the emotions associated with it regularly, and I feel the grief again. My mood might change, just for a moment, maybe a bit longer, and life goes on.

    When I don’t have my therapy properly I experience another grief. It’s called tiredness. Yeah I get very tired when I don’t maintain my dose. When I was taking Panteston Capsules I mapped my dosage very carefully for a month, taking careful notes of when I took my medication. Over a month I’d miss a third of all doses. I was tired a lot, and I was very moody, and irritable, and tired. And all the guys I hung around with at work, they had much more energy than me, and I couldn’t keep up. They’d encourage me to go to gym, and weight lift, but it’s just too hard to explain, constantly why I’m not that get up and go-ish.

    All these things add to grief, that elusive emotion that sweeps in like a mist as if there was no cause, but there is, and I need to recognise it.

    • Posted

      I used to be amazed, now I'm just amused.  Klinefelter IS NOT A DISEASE!  It is a genetic anomoly, and that is all.  There IS NOT A CURE for it, but there are ways to work with it, around it.  You have two options the way I see it: 1 - live with it, work with it, quit complaining about it, live life.  2 - end your life. 

      All your points stated above are everyday occurrences for anyone/everyone, anywhere/everywhere.  Unless one is a narcissist, of course.

      I was dx'd in September 76 at 30 yoa.  I'm 69 now.  It is what it is. 

      Too blunt?  Too bad, no apologies.

    • Posted

      I agree and I don't agree, because I've put a lot of effort into studying KS and XXY and they are by no means the same thing.

      Klinefelters' syndrome is the syptoms of a disease.  The disease is Seminiferous Tubule Dysgenesis.  Klinefelters' syndrome is a form of male hypogonadism, and hypogonadism is under sufficient level of testosterone to be healthy. Klinefelters' syndrome can be brought about by any amount of additional X genetic material, even just a few repeat X genes on the only X and XY man has, can bring about Seminiferous Tubule Dysgenesis, which in turn causes hypogonadism.

      XXY is the most common aneuploidy that can cause KS to develop. Aneuploidy is a medical word that means 'not the usual number.'

      Nobody has ever been born with Klinefelters' syndrome.  Klinefelters' syndrome can only manifest after the onset of puberty in males with any degree of additional X genetic material, but it is not an absolute. Males can be XXY and never develop KS.  

      I refer you to my opening sentence, "This is what having Klinefelters' syndrome feels like for me:"  and my ending sentence "All these things add to grief, that elusive emotion that sweeps in like a mist as if there was no cause, but there is, and I need to recognise it."

      How you feel is your business.  

    • Posted

      So, I agree Klinefleters' syndrome is not a disease.  By the way the word 'syndrome' gives us a clue as to what it is.  It is a collection of symptoms of a disease named after the first doctor whose name appeared on the document that described it.  Harry Klinefelter was the first doctors' name so it became Klinefleters' syndrome, or as I prefer, Klinefelters' symptoms of disease.  

      Not a disease in itself, symptoms of a disease, the disease being Seminiferous Tubule Dysgenesis.  Seminiferous tubules are found in the testes (balls) and they are not fully formed until after the onset of puberty. Therefore it stands to pure reason, that nobody was ever born with Klinefelters' syndrome. eek

      This is just ONE condition that the additional X genetic material can bring about, and it is not the first.  The first problems the additional X can cause are developmental delays in babies and children.  Although I can imagine XXY boys having developmental delay  that is NOT related to them being XXY.  It may be that other boys in the same family have the same delay, to the same degree, indicating to me that some other genetic reason is the cause.   

      Every male who is XXY has just 1 thing in common at birth, the aneuploidy, even the genes affected or excessively expressed, may not be the same?  IF  the degree of difficulty experienced is because of over expression of X genes, (which I strongly suspect it is), from a particular parent, as either parent can have provided the additional X, then that will explain why such wide variation of effect is seen.  Just being XXY is not a guarantee of ANY symptom.

      There is also X inactivation, have you heard of X inativation?   We do not have, and nobody does have, both X's expressing in any given cell. One is always inactivated, so we actually have just 1 X and Y genes expressing in any given cell.  Which X is the problem, or may be the problem?  

      Females generally have random X inactivation, effectively meaning that each parents' X is expressed roughly evenly.   XXY males have skewed X inactivation, meaning large groups of cells may have just 1 parents' X being expressed, causing problems.  So 1 XXY man at the same age as another XXY man may have completely diffierent symptoms, even though they have the exact same karyotype?  They're the genes expressed that matter, not the number of chromosomes.

      So I can safely describe myself as a "man with an inactivated X"  rather than a "man with an additional X."   

      Learning just about a form of male hypogonadism, what KS is, and hoping to answer all questions relating to additional X's in males, is going to leave many short of a great deal of information. It just cannot be done. KS has absolutely nothing to do with developmental delays in children.

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