What does it feel like to have Klinefelters' syndrome?
Posted , 68 users are following.
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.
6 likes, 399 replies
jen99028 XXYGuy
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jen99028
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XXY jen99028
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jen99028 XXY
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XXYGuy jen99028
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jen99028 XXYGuy
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XXY jen99028
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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.
XXYGuy jen99028
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XXYGuy jen99028
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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.
au-x-man XXYGuy
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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
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.
XXYGuy au-x-man
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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.
au-x-man XXYGuy
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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
Robert_xxy XXYGuy
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XXYGuy Robert_xxy
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XXYGuy
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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.
eunuch79 XXYGuy
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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.
XXYGuy eunuch79
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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.
XXYGuy eunuch79
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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.
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.