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.
It's very stressful as you have fat around waist and even with gym can loose it, I am sterile I wanted children when I was young sometimes I feel like ending it all. I feel like am not human it's stressful and sad
I only in the last few years have been able to gain weight, spending most of my life skinny, so now I like that fatty middle bit, I look just like many other men my age, I fit in just nicely. Now that I have a family being sterile is a non event. The lesson I learned was to sacrifice everything to gain a family, and if then I still did not have a family I can say truly I have given it my all and failed.
The most devastating feature of being XXY, the continuing saga, is I just don't fit into society at large. I fit in as well with XXY guys as I do with everybody else, not at all.
So I have given up trying to fit it. As I determined when I was 16, it is everybody else with the problem, not me. 
There is nothing worse than being told you have 47 XXY. I have been diagnosed with it 10months after we were married and my now brings things up aganst my condition which really hurt, like you're immature, you are so thick, it's all your fault.....sometimes I wish I wasn't even born or at least I wish I could sue my GP for not finding out earlier! I invested huge money prior to setting up a household and to then be told this......it makes life really testing. If we didn't have Christian morals we would've moved on and gone our own ways I'm sure.
I truly sympathise with every guy with this condition, it is seriously hard! It is a life changing experience.
I'd wish XXY on my worst enemy. Unfortunately my worst enemy is an XXY guy.
Only 10 months diagnosed, and you have a world more information than I had when I was 10 months diagnosed. It used to be the idea that to give XXY guys testosterone therapy and by the time they're 40 everything will work out.
It is simply not true. Whatever difficulties I have now, or back when I was a teen or child, I'll have for the rest of my life. I see no reason why that will not be your scenario also.
Not all XXY's have educational, or psychological, or psychiatric problems at all, nor if they do, to the same degree. How we were raised will also affect us for our entire lives, I believe.
The best time to change our futures is birth, but even then if our parents are not capable of parenting properly, a diagnosis at birth will not be of any benefit.
Imagine how it was for every XXY before the internet, how every little bit of information had to come from whatever your doctor knew, and whatever therapy you got was subject to that knowledge? Imagine how any information you sought was kept from you by nurses in particular, and they insisted you could only see your specialist doctor for him, usually it was a him, to share information he thought you could understand? Imagine how it was that there was no-one you could talk mto but doctors, and if that doctor thought testosterone caused violence, you'd not get any therapy at all? Imagine how is was when yoiu tried to explain KS and XXY to anybody they could then go looki it up in librarys and discover you were mentally retarded? How when they discoverd that information they'd call you a liar as it was obvious you werre not mentally retarded, but that was all the infortmation available, as there was no independant source, no internet!
See how lucky you really are, now?
Even worse when your wife dismisses it... Memory loss due to social drug use! :-)
Man, you just have to accept the life you have & get on with it.
who knows what goes on unside our bodies or minds?! :-)
You cannot seriously expect to have a discussion about how it feels to have KS or consider yourself to be blessed by looking younger with KS (sarcasm aimed at those look younger from one who does not) when there is such diversity.
That semi quote I've seen you make ...Klinefelters' syndrome does not manifest until after the onset of puberty,.. It is plainly nonsense to suggest that KS does not manifest until after the onset of puberty when it is also recognised that at birth most KS babies will have a head circumference that is smaller than the average baby and in Sweden KS babies are terminated far more frequently than anywhere else.
Talking about what it feels liketo have KS and talking about what KS is and when it manifests are all completely diffient topics.
Since way back in the days when I was diagnosed it was known KS does not manifest until after the onset of puberty, it's even written about in eteemed medical dictionaries as such. I can't ignore what is written and what is known.
How about an esteemed American textbook on endocrinology, would you be happy with their definition, considering it were American doctors who first described the syndrome (symptoms of disease)? Or how about the reports written before genetic testing was invented, that descrfibed Seminiferous Tubule Dysgenesis - so complicated and hard to say, which was abbreviated to Klinefleters' syndrome?
Try this direct quote ".....The characteristic features which first become manifest during adolesence are....."
There are not such people as KS babies.
There are XXY babies.
XXY and KS are not the same thing.
To say KS and XXY are the same would be to say XXY and AD/HD are the same thing, since AD/HD is a regular disgnosis in XXYs.
Another frequent diagnosis of XXY boys is being underweight, failing to thrive, missing or delayed early milestones, are all those KS too? Of course they're not, they are simply associated with being XXY.
How many XXY babies are born witn gynaecomastia? How many XXY babies are born over 6 feet long? How many XXY babies are born with seminiferous tubule dysgenesis? How many male babies are born with sparse facial and body hair? How many baby boys are born obese? So if no boys, or XXY boys, are born with these features of KS that become manifest after the onset of puberty, how many are born with KS? The answer is:
"Nobody has ever been born with Klinefelters' syndrome."
Can I argue that my experience of being XXY is like any other XXY males' experience?
No.
No, the only thing ALL XXYs have in common is being XXY.
I have met some XXY guys who have led a similar life to mine, but not identical. I just deleted an entire comment that I thought was pretty good, but oh well, it's not an XXY trait, it's human. XXY males are human.
In my life I have met many people who were abused by their parents, and other people. I have met many people who were abused at school, called bullying. I have met XXY's who are bullies.
I have met many XXY's who are homosexual, and heterosexual, and bisexual. Are these human or XXY traits? I have met XXY guys who are really clever, laywers, accountants, clergy. I have met XXY guys who are like me, gardeners. XXY Men and boys who have psychiatric disorders, psychological disorders, regular physiological disorders.
I am not immune to the problems of being XXY, or the problems of being human.
I am amused by the parents of XXY boys who seem to collectively think they're somehow brilliant parents, even though like most parents they had no formal training. Being fertile is all that matters, to them. Their fertility affords them authority. Of course it's not true, they just beleive it, as they can't bring themselves to believe they ever did anything to cause the XXY boys and men to have problems.
As Dr J Neilsen showed, XXY boys raised in poor homes did substantially worse than normal children raised by bad parents. Good parents are taught to be so, they're not just born that way. XXY men not doing well in society as adults can probably blame their bad parents, who probably were really bad. After all the XXY child is often not known to be XXY until much later in life, when the bad parents have had years of bad input into their lives. But even when it can be shown the XXY men are doing poorly because of bad parenting, as adults no quarter is given them, they will be penalised by society at large, until they can learn acceptable behaviour.
Being too young looking for too long was a big problem for me. I don't have that problem now as I sought a remedy, and found one. Oh yes it's not a lifetime sentence to be permanently young looking, it's all a matter of hormones, enough of them, or it really, enough testosterone will alter your life forever, if you want it to? So when you've made yourself appear like any other man, you'll discover that which you thought caused you problems wasn't it at all, the problems will remain. I guarantee it.
I have difficulty with learning, yeah, I have AD/HD Inattentive Type. My mind just turns off at any odd time repeatedly throughout the day, or night, UNLESS I take my medication. I have an extrra chromosome and its' effects in my life are profound. Resolving how I appear made no difference to how I learn. Testosterone was not the answer to the educational problems.
And psychological issues related to anger, and esteem, and confidence, they had no improvement because I took testosterone, or AD/HD medication, I had to seek other professionals for those to be worked out or through.
Some things will never change. A combination of bad parents, and that pesky additional X, and my inability to relate to other humans. I don't notice all sorts of things, like when I'm pissing people off, or if the traffic light is red, or green, or amber. Like what the time is. What day it is, what month, what year!
Why is it that XXY males are so different, yet in some ways so similar, have you ever asked yourselves? Well the answer I propose is because we're human. As human we have certain responses to certain situations that we learn. Like we learn to scream and shout when we don't get our own way. Well children learn that,and adults keep that learing if there's no other input.
In my opinion.
Well there are numerous published papers with opinions about KS and puberty that simply may reflect the limitations of any particular study. For example and published online as a defining factor by the UK KSA site everyone born with KS does not go through puberty because everyone with KS has a high pitched voice when the likely facts are that some KS with an influence within the UK KSA site did not go through puberty because their voices did not break while others may not have had an identical experience.
I had chest fat and signs of central mass obesity aged 9 before I entered puberty aged 11 and I was not typically perceived as being fat by any stretch of the imagination. Later in 1981 aged 27 I was 6'5" tall weighing 11st 7lbs ( 73.18KG) with a 32 inch waist perhaps 4 sizes larger than it should have been. My waist has always been disproportionately larger than my build. But as I understand it this was not your experience. There are numerous published opinions about when KS becomes noticable in particular with the lack of physical development attributed to testosterone which typically occurs at 13 across the male population but it is a mistake to assume that 13 is a magic number. Likewise small testicles are a retarded feature within KS present before puberty I do believe though based upon my limited experience.
Ok, how can I put this, mmmm, just because a child is fat and XXY is no reason to assume the XXY has anything to do with it. Children and teens and adults get fat because their energy input is greater that their energy output. Over the past 20 years those who live in western societies have been getting fatter, because of over indulgence of fat and sugar and lack of exercise. Even people with Prader-Willi syndrome get fat for the same reasons everybody else gets fat, too much energy input, too little energy output.
XXY males are not born with Klinefelters' syndrome, as Klinefelters' syndrome is the result of insufficient testosterone over a long peiod of time. It is not testosterone that is needed for energy but a homone testosterone is converted into, in the testes of males, and that hormone is oestrogen.
Klinedfelters' syndrome is the outward expression of the disease of the testes called Seminferous Tubule Dydgenesis. STD causes the testes to atrophy, or shrink. STD can only develop after the onset of puberty. No boys prior to the onset of puberty have mature seminiferous tubules. All boys have leydig cells in their testes, and leydig cells produce testosterone. The reason even XXY boys have growth of their testes is because their leydig cells produce more testosterone at puberty.
Females, generally, are shorter than males. This is because females get their growtrh spurt at the start of pubery and boys at the end. Oestrogen is produced by fermales in large amounts at the start of puberty, and oestrogen causes the long bones to stop growing. It takes time for the testes in males to gear up to produce sufficient testosterone to be converted to oestrogen to oestrogen, to cause the long bones to stop growing. XXY males tend to be taller than XY males as they have much less testosterone to convert to oestrogen, and their long bones don't stop growing as they should, cause them to be, in many instances, very tall and without the added musculature males usually have.
Puberty in males begins from about age 10 or 11, and the first outward sign of puberty in all males is darkening of the colour of ther scrotum. Most likely you will not be aware of this change, unless it was pointed out to you, at the time. All XXY boys begin puberty. I know of no record of an XXY boy who did not atsrt puberty. The degree to which puberty proceeds before the boys fails to proceed in puberty is wholly dependent on personal circumstances and genetics. Some XXY boys experience testicular growth to 12mL volume, but most will only see up to 5mL growth in volume. When I was diagnosed my testes were said to be 1.0mL volume, becuase the gauge only went as low as 1.0mL, they were in fact much less than 1.0mL volume. I had otgher signs of pubertal development, such as enlarged scrotum and penis, and pubic hair, I don't know to what degree my testes grew to until testicular atrophy set in, but their lack of growth after atrophy was spectacular!
So like all other XXY's I started puberty, and like most other XXY's puberty failed to proceed. Testicular atrophy is the first outward sign of Klinefelters' syndrome.
Inside the body the first sign of KS is elvated levels of FSH, Follicle Stimulating Hormone, and LH, Lutenising Hormone. FSH tells the testes to make sperm, and LH tells the testes to make testosterone. Typically both these hormones are elevated in males with the actual syndrome as they're not producing sufficient testosterone to counter their production. So long as the testes fail to make sperm and testosterone LH and FSH will continue to rise, wehn they ought to plateau. So again, all XXY boys start puberty, and they do not have signs of KS outwardly or inwardly until their testes atrophy, after the onset of puberty.
Can you follow me?
Ok I have just been reading an article in a PDF entitled AACE Guidelines presented as an update in 2002 which is basically an over view of the evaluation and treatment of Hypogonadism and there amongst the multitude of information are these jewels. On page 441 ... When hypogonadism develops before the age of puberty, the manifestations are those of impaired puberty. The article then provides a bullet point list of symptoms small testes, phallus, and prostate, scant pubic hair, disproportionately long limbs (delayed epiphyseal closure), reduced male musculature, Gynecomastia, and Persistently high-pitched voice. It then goes on to list postpubertal symptoms perhaps more typically described as secondary hypogonadism. The problem with published papers is that all too swiftly they become out of date info or they sit there for 30 years until the next study comes along while another problem is that the information need not be universally accepted or even read.
If you type AACE Guidelines-2002 update it will take you directly to the article
So as previously stated I do not fit the slot...I had pre pubertal development but I also entered puberty I do not have a small penis or a high pitched voice but obviously some people do...and having long limbs need not indicate excessive height with one recorded KS being 5' 6" and another 5' 8" but they had legs longer than their bodies.
I beleive I have that article, certainly I have read it before. I'm sure it was true, well it would be true if the authors saw XXY boys as they describe? I beleive they're speculating rather than detailing actual cases.
There are plenty of examples of boys and girls not entering puberty, who have Kallmann syndrome, and are hypogonadal even in the womb.
Anyway whatever, finding an odd rogue report is nothing really. Hypogonadism prepuberty is very hard to detect, it would really have to be on the basis of LH & FSH levels in blood, and why would anybody be looking? Some XXY boys before puberty are taller, but that has nothing to do with hypogonadism, as we see in XXX girls and XYY boys, who are not hypogonadal, but the Kallmann boys and girls are, and of normal height.
If a description of hypogonadism is true for XXY boys before puberty, it must also be true for anybody else who is hypogonadal, and it just simply isn't. There is no such thing as pubic hair in prepubertal childen, and no such thing as small testes as ALL boys have small testes before puberty.
I know I had normal onset of puberty, I know most XXY boys have normal onset of puberty too. I also know that some don't, some are delayed, but not so delayed they're diagnosed XXY because of that delay.
I've been XXY all my life of course, and I've never been tall, I was one of the dshortest in all my classes until high school, then I was about average, and later, after school, I was skinny, no musculature, sparse facial, pubic and body hair, classic KS symptoms there, but not at all tall. This is why is is true to say "Some XXY babies may go on the develop the symptroms Dr Klinefelter described, but a lot of them won't" and you and I, and the other fellows you mnention, are examples of those that didn't.