What does it feel like to have Klinefelters' syndrome?

Sorry for not replying back sooner as I'm sure it's been over a year coming to this site. I see that you're still going strong communicating with people here, some in need as you were extremely helpful to me and some to argue. Since my last showing here, I went through three different brands of testosterone as my testosterone level was at an all time low of 18 (compared to the minimum normal of 350 to 1200). While taking any brand or form of testosterone, I realized I'm not only more tired but also my muscles are in a constant state of spasm to the point that walking one block of a 30-meter street would cause agonizing pain. So obviously I made an executive decision and said to myself I'll take the risks of osteoporosis and the other side effects that has been published for tests on XY men with testosterone deficiencies. I guess life will tell me if I will ever have osteoporosis as a result of low testosterone. To tell you the truth my energy level has gone back to normal (at least for me) and I work three jobs (one full-time and two part-times) aside from recently being blessed with a son. 

I wish if there is a convention or gathering of some sort to one day meet you in person.

i have to say that I still experience reading disabilities but as my wife puts it when I read blogs here or something that interests me, I am alert and remember the cases without having to re-read over and over again. When I used to read science textbooks there were evidence of dyslexia and I needed to read a page over and over again until I could remember a few things.

As I read newer blogs, here, I still like your approach in answering people's questions and I tend to agree with you every comment I read.

Keep it up sir and once again thank you. You put my head back on the track of life.

 

I don't know of any woman who wants testosterone.  I know of Transmen who take testosterone though.  

My doctors name is John delahunt, he works at Wellington Public Hospital, Newtown, Wellington, New Zealand.  I've known John since I was 17.  He didn't start me on testosterone therapy until after I was 18, after I became legally adult and able to refuse, or accept, as I so chose without needing parental consent.  My doctor was very reluctant to use full dose testosterone therapy, starting me of such a low dose I didn't even notice it.  His other reason for waiting was that my body was not showing signs of testicular failure, hence no symptoms of Seminiferous Tubule Dysgenesis.  My balls were functioning until October that 18th year!

So I have no experience of testosterone therapy being offered to people who don't say they want it. 

I DONT want testosterone.. but the drs can do what they want here, if they think its in the patients best interests, regardless of if they want it or not. I have refused to go back to the hospital becos of the injections they gave me ..which they said would help my problem, but they didnt explain in what way or what it actually was. .. I have been called fat... see profile picture.. i have never thought myself as fat but apparently 55kg is overweight if youre only 165cm tall. Im sorry i dont know what it is in pounds or feet etc cos we have only metric here.

No they can't, doctors in Australia have to abide by certain rules of proper conduct, no matter who the patient is, or how the patient presents.   

Klinefelters' syndrome is not a notifiable disease, nobody has ever been forced into hospital for threapy to treat hypogonadism!  

Nobody has ever been forced to have testosterone therapy, although I expect there's the odd teenage boy who had the choice taken from him with his parents assuming all control.

Such situations always end in disaster as the boy rebels as soon as he hits 18, and then slowly but surely succumbs to hypogonadism, which is why doctors do not force hormnone therapy on anybody. Doctors want willing patients who take their medicine, they don't want a constant fight that saps energy and achieves nothing!  That's the sort of thing controlling partents do, not smart doctors!

We only have metric in New Zealand too!   I would not call a 55kg adult 'fat' unless she were 4 feet tall!  180cm is roughly 6 feet, so 165 cm is roughly 5'4"  'Google is your friend!'  I'm 5'9" and I weigh a lot more than 55kg!  I don't think I have ever weighed less than 65kgs as an adult!

i dont know what to say... i do not think i have Klinefelters Syndrome.. but i have been told over and over again that i do and that i am a Male!!! I cant identify with that becos i know i am Female and have always been so, as far as I know. The endocrinologist i am seeing at Flinders Medical Centre in Adelaide tells me i must have had either a sex change operation performed at birth becos i was hermaphrodite or i underwent a a sex change later at puberty...which i hotly denied. I told him I had periods as a girl and to show me which men did this..he refused to believe me, saying i probably had a mental problem and was making it all up becos in my head i couldnt handle it!!! oh yeah ...sure, that must be it .... lol .............. I am now in the process of trying to backtrack my hospital records from 25 years ago when i underwent my total hysterectomy to see what in the actual records about it and myself. All i was told at the time was that if  i didnt have the operation i would die becos i had a  cancerous growth in my uterus ( yes they said i had one) which was making its way up my fallopian tubes... and that i was XXY which apparently was caused by me been a twin inside my mother before i was born and i somehow absorbed him and his DNA.. I believed this at the time mainly becos i knew nothing about it and becos drs told me an i was young and naive.. drs tell me now this is impossible.. hence i am trying to recover these records. I thank you for all your information and help. And i will say that i wasnt forced to take testosterone but i was misled as to what the injections were. I would sue the hospital and therefore also the government if i could get a lawyer to take it on as i myself have not a lot of money. The hospital is a government run one so in effect i would be suing them and we all know where that gets ya.......... nowhere.,

I'll reply again later. Give me the name of this crackpot Endocrinologist and I'll have mine steer him/her inthe right direction.  I can't imagine any doctor being so ignorant of recent geentic findings than the one you're referring to.  The link I gave you regarding another XXY female written of by Dr Milton Diamond ought to go some way in getting your moron to see sense!

Klinefelters' syndrome is a collection of symptoms indicative of the disease Seminiferous Tubule Dysgenesis, without seminiferous tubules at birth, you can't have Klinefleter's syndrome, and I can argure that is an XXY male is castrated he can be 100% cured of Klinefelters' syndrome, although it would only be a technicality as XXY males actually with KS have redundant testicles anyway!

I'm not aware of mitral valve defect being part of KS, and since KS can't develop until after the onset of puberty, it's impossible as the MVD is present from birth. Nobody was ever born with KS, although there are plenty with KS who think they were born withy it, and their doctors too!

Central obesity, both my parents had central obesity, neither of them were XXY, my sister has central obesity, and she's not XXY, and I have it too, developed it after I stopped working so hard, exercising altogether actually.  Exercise reduces, even prevents obesity.  Genetics does not cause obesity, lifestyle does.  Even people with Prader-Willi syndrome are obese because they eat too much and exercise too little.  If we all ate less and exercised more we'd all lose weight.

Oh and I met a woman on Facebook who just added me to her KS page without asking, and before she knew my stance, we're not fat (those of us who are) because of out genetics but because we eat too much and exercise too little.  Her son is XXY and fat, and he's fat because she fed him too much, and didn't get him exercising enough. The whole family is fat too, but only her son is fat because he has KS, a prepubertal boy!  Prepubertal boys can't get KS, is a post onset of puberty set of symptoms.

So she blocked me from her group as I won't be changing my mind, or facts, just because they don't fit with the commonly held misunderstandings.

See my profile picture, that's me, sucking my belly in.

If you read through here you'll discover XXY males who were even fertile, there is no symptom of KS that can be said to be indicative except Seminiferous Tubule Dysgenesis.

I have answered all your questions.  You don't have Klinefelters' syndrome, only males can develop Klinefelters' syndrome, end of story. I even provided you with a link to a report about an XXY female who PhD Dr Milton Diamond refers to as having Klinefelters' syndrome, so if you want some kind of moral support he can give it, I'm sure he'll be delightred to.  PhD doctors, what do they know!

The major symptom of Klinefelters' syndrome is Seminiferous Tubule Dysgenesis, otherwise knows as 'atrophied testes' and females don't have testes so how can you possibly have Klinefelters' syndrome?  Oh you think you were told by some doctor that 'you have testes in tghere somewhere' well I think you're mistaken,  it is simply not possible to have opposite 2 sets of functioning gonads, and you have ovaries!

It is possible to be a hermaphrodite and have 2 ovaries and a testi, or two testes and an ovary, but those people get pretty sick and are admitted to hospitals in extreme pain, needing urgent surgery.  Errant gonads tend to cause major problems as the testes are contantly on the move looking for that elusive scrotum to migrate to, which is not possible in a female. And males with ovaries have no good luck as being immune to oestrogen like AIS females do in being immune top testosterone. They develop pretty damn quickly female secondary sex characteristics, which may or many not, get them diagnosed before they get terribly ill?

The medical profession really isn't all that good at discovering sex related medical conditions.  Those of us who have been diagnosed ought to count ourselves as bloody lucky!  

And what you say, is so far away from my experince, I cannot relate to it.  Maybe a group for the Transgendered is better for you? 

Well I used to live in Australia and I knoiw full well how racist most Australians really are, even their laws are racist!

So everything you say is 100% true is it?  Yeah I've heard it all before, every year another person comes along with some, well outside what they think is strange, account, and it isn't. XXY females are well documented in medical literature, all you have to do is look for it.  I don't have to look, I know it's there.

So as that doesn't get my attention as expected the story has to get more and more strange, and I'm supposed to say "Ohh wow"  and I don't, I just think of the claims made and compare them to my experience.  My experience is one of not being treated with testosterone to the best extent.  That XXY guys are often all lumped together as if they really are all the same, all requiring the same level of therapy regardless of how they actually respond.

So I could go along to my named doctor for years, and even though I showed no sign of physical maturity, he did not think to increase my dose, as I was getting the  maximum dose the medical profession had decided was appropriate for XXY males!

I've come by XXY men who have strange stories to tell, maybe you'll discover them too, they do live in Australia after all!  Men who claim their doctors didn't know the type of testosterone they were taking couldn't be measured in a standard blood test!  Men who claimed they were forced to have hormone therapy, men who claimed when they requested female hormones were denied them.

However my experience and my discussion with doctors here, in Australia, in America, in Canada, in Britain, all come to the same result, NOBODY is forced to take hormone therapy.  The medical profession is reluctant to give testosterone to anybody.

But like the XXY men in Australia you're different.  There's no doubt about it, everything you say, and they say, is the god honest truth. So you'll be delighted, as they were (not really) to tell us the names of the doctors who treated them, and where they work/ed, who forced them to have surgery and hormone therapy, and ruined their lives?

If you want to believe you have KS, believe it, feel free, tell as many as you like, but  don't expect everyone on the planet to believe you. It would be an outrageous imposition on logic and common sense.  Only males can have Klinefleters' syndrome.  Adult females are supposed to have breast tissue, and of course you know Gynaecomastia is a symptom of KS, and Gynaecomastia is not found in femles, for them the 'condition' is called 'Breasts!'  Females also have pubic hair in the triangle female fashion, so do untreated XXY males.  And fat distribution in the female form they also get when they're not treated.  It's not really any wonder some of them think they're more female than other males.  So would it be very strange for a woman with XXY sex chromosomes to think she has KS when some of the symptoms of KS are the normal body formation of females?  No I don't think so!

And if your doctors really are doing and saying as you claim, I'd sue them.