What does it feel like to have Klinefelters' syndrome?

It's really good you've found a doctor who can treat you, and advise you correctly, although you will be the very first person ever to have been found to have 2 sets of opposite gonads!   My understanding is it is completely impossible, however it is possible to have had, or have, Ovotesis, which as the name implies are gonads made up of ovarian and testicular tissue. 

Generally people think a hermaphrodite is someone with both male and female external genitalia, but medically speaking a hermaphrodite is someone with both ovarian and testicular tissue in the same or opposite gonads. So if you do have a testicle, or did have ovotestes, you would be described as a hermaphrodite, well you would have been until recently when all the terms and names changed to be more accurate.  Dearest darling Dr Milton Diamond has described XXY males as 'male pseudohermaphrodites' even thougn the wouldn't any more owing to that change I mentioned. If he were asked I'm certain he'd say we XXY males were not real males.

Not being a doctor I can't really comment on the therapy you're receiving,  I just hope it works out well for you.

Heart disease in males is substantially higher than in females, but not every man will get heart disease and not every female will be spared heart disease. There are just some diseases that appear more frequently in certain population groups, and XXY males are indeed a population group.  

Take that back to your not as smart as s/he could be doctor.     

Dr Risely at Kopata Medical Centre, Lower Hutt, told me, "we think you have another chromosome, we think you have Klinefelters' syndrome"  and after a while, and an examination he said "if you ever want to talk about anything I'll always be here."   It took me a while to find something to talk about as all the nitty gritty, really important stuff he failed to mention!  My parents were told more than I was at the very beginning!  My grandmother knew more than me when I was first diagnosed. I was very annoyed to discover I was the talk of the family before I KNEW anything.

So; do I believe what doctors say, not really, I believe what I can independently discover, and get them to confirm it if necessary?      

"And according to my new doctor he said heart valve problems are common in all  XXY patients male or female but does not usually manifest til later in life (over 50),"  

So something common in all XXY's is ALL to me, what does "all" mean to you?  I'm over 50 and I don't have heart valve problems, yet, and I sure am XXY, have been all my life, and I do mean ALL in this instance.   

I think some doctors just get carried away with themselves.  In reality MOST XXY's are never diagnosed at all, as the worldwide studies done in the 60's, 70's, and 80's to determine incidence of XXY, (and every other aneuploidy) and the prevalence of Klinefelters' syndrome diagnosed in older men has a strong realtionship?  The doctors do like to tell us XXY is KS!  One study I have from that era  lists all the karyotypes found with additional X's, or males with no Y's, as "Klinefelters' Syndrome" and has an incidence rate of 1:596 (live male births).  No XXY females were found in that study, which tested 34,910 newborns between 1969-1974 & 1980 -1988.  

Even when my Endocrinologist says something about XXY/KS these days I ask 'got anything written down about that?'  Maybe your brand new Endocrinologist has more up to date information than me, and maybe s/he can provide a copy of it, as if it exists it will be written down. 

Anyway, all I'm prepared to say for a certainty is that ALL XXY's are XXY.  I can find reports that indicate educational difficulty for XXY boys, and adult XXY men who say they never had any educational difficulty and are offended by the suggestion.

The reason there is wide viariability of effect in XXY's could be the X inactivation they have, in that it is skewed.  Usually people with 2 X's have random X inactivation, and they're usually female,  So the X from the mother and father is turned on and off roughly evenly, whereas those of us with more than 1 X, and male, and with the genes that say 'make a male' so 46XX males also qualify,  have groups of X's from the same parent turned on and off, or not random at all.

How you came about, well that's more speculation in order, it may be thyat you absorbed a twin, and it may be that you came by the X in a perfectly ordinary way, and obtained the Y by accident?  Obviously the 'make a male' genes are not present or not functioning.

You're much more unique than any of us regular XXY male types.           

The ICU nurse said to me on the way in, 'this drug we want to give you might kill you, but you will die if you don't have it, and we need your consent to give it to you.'  So I gave INFORMED consent.  So I was pretty sick, I reckon... and 4 days later I was not sick at all, so I signed myself out.

In the mean time I've been back several times for what was an unknown 'mystery' illness.   It turned out to be my gall bladder, so that was whipped out a few months ago.... and I tell people my fat belly is because they pumped me full of some gas for the key-hole surgery, and my muscles haven't settled back down yet!    Any excuse will do other than 'I eat too much and exercise too little!'  

Heart disease as a general topic is common in XXY's, but in this day and age specific types of heart disease will be hard to prove on the basis of  karyotype as we (people in general) know that males are prone to heart disease whatever their karyotype.  Then there's smoking, what relationship does that have to karyotype, other than XXY tend to be anxious, and prone to risky behaviour, like smoking tobacco.  

Oh and it's not the smoke and tar and gunge that's the problemn but nicotine itself, it causes inflammation!

I'm from New Zealand, we eat lots of red meat, even though I don't anymore, but I have done, and I drink alcohol, another cause of heart disease.  The flavour is in the fat, and I still eat the fat in meats, and my testosteorne I take is transported round my body in fat, and I'm advised to take it after a meal....so is it the testosterone or the fat that's the problem? 

I know therer's a genetic link to heart disease, simply because males are more affected than females, so it could be that your Y is an aggrovating factor, but I'm pretty sure there'll be plenty of other aggrovating factors also. 

I wish this place had a spell checker!  

Do you have an out of sync testosterone/oestrogen ratio?  Do you check yourself for lumps? We're advised in some publications to check ourselves, well those of us who've never had bilateral mastectomy that is.

I used to have a massive level of estradiol, that's the male version of oestrogen, what testosterone is converted into I understand.  Males need oestrogen too, and they need it all their lives, and since they don't have ovaries, they have to it converted from testosterone, and if there's not enough testosterone, there is not enough oestrogen too, and they get very tall as a result.  

Did you know that is why females are shorter generally, than males?  Females get a large dose of oestrogen in early puberty and their long bones stop growing, but males don't produce sufficient testosterone to be converted until the end of puberty, so generally they're much taller than females.

So how tall are you?