Parents of XXY’s

Do I talk about parents of XXY’s, no not normally.  They have their own ideas, they are interested primarily in their own child, and what they seem to forget is the same, they are only temporary caregivers.  The XXY himself will take over from them pretty damn quickly,  in just 18 years.

What can we say about most XXY’s?  Nothing, most XXY’s are never diagnosed.  What can we say about XXY’s who have been diagnosed,  lots and lots and lots.  Are they representative of all XXY’s, who knows?

Of the XXY’s who have been diagnosed, parents, we can say your son probably will have educational difficulty to some degree.  Do you want to read it? Do I give a shit?   What about XXYY’s and XXXY’s and XXXXY’s etc….?   Yes they are going to be much more severely affected.   Is your XXY son going to be like them, probably not, most unlikely in fact.

Are all XXY’s male, no they’re not, but I’m not interested in XXY females so if you want to read about them, go somewhere else.   I don’t even know where you can go, that’s how interested I am.  Do a PubMed search or something, do your own studies.

Klinefelters’ syndrome…. no I just can’t talk about XXY without mentioning Klinefelters’ syndrome.  Nobody has ever been born with Klinefelters’ syndrome.  Klinefelters’ syndrome develops sometime after the onset of puberty in every single XXY I’ve read about, and met in person EXCEPT 1.  The medical profession won’t say an XXY with normally sized and functioning testes  (balls)  is just XXY, they will say he has Klinefelters’ syndrome, even though it is a physical impossibility.   Klinefelters’ syndrome is a form of male hypogonadism  that manifests (love that word ‘manifests’) in adolescence, and it is the symptoms of the disease Seminiferous Tubule Dysgenesis.  So parents, your XXY son is probably going to develop Klinefelters’ syndrome eventually, it’s just not guaranteed, and it is a disease.

The one instance I know about, where the XXY man had normally sized and functioning testes,  I read in a reference in a report by Dr Shirley Ratcliffe, and he was detected because of investigations for something else. He lived in Israel and he’s probably dead by now.  But as it happened once, who’s to say it won’t happen again?

Oh that disease thing seems to be a big problem for some parents, some XXY adults too. They just can’t abide the idea that some people are indeed born with diseases.  For some reason they have to believe they or their son is  not sick.  Not all sicknesses are medical in nature, some are genetic, XXY is a genetic disease.    Some diseases are psychiatric in nature, AD/HD is a psychiatric disease and is also endemic in the XXY population.

Not Uncommon

I just wrote a post to somewhere, to a group of people, but I think it’s worth posting here too:

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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. I think you do too.

Graeme,
XXY4LIFE

Australia 1988

A year is a long time, it’s 52 weeks, remember. I must have seen John before 1989 as I went to Australia in 1988, to live, forever. Forever isn’t very long at all. The maximum length of script for Panteston I could get was 6 months, so that’s what I got. I also got a letter of introduction for specialist care.

After I got my Redundancy in 1987, hardly worth the effort I put in to that company, I made Head Boards for Waterbeds. I had my own division I built from me to a staff of 6 I think? I suppose my employer noticed I was the right stuff to train. They were good to me, they were excellent employers. I was just pissed off I lost my job for reasons beyond my control. They relocated to Auckland and my last task was to train my replacement. My employer had 2 factories and they were shutting down their Wellington branch, so they had all the people they needed.

‘sigh.’

1988 was Australia’s Bi-Centenary year, celebrated in September I think? I was on the Gold Coast by then in a bar with my uncles, that’s why I went to Brisbane I had family there. If I’d gone to Sydney I might have survived longer, but it was all going to fall apart anyway. I was ‘gun shy’ by then of all doctors.

I had my letter of introduction from John, I had my 6 month supply of Panteston, but there was an unforeseen problem. My Endocrinologists letter was worthless, fuckit! I saw a Brisbane doctor for a new script at about 7 months. I was never any good at taking them all, on time, so I had a few leftovers after 6 months. The doctor I saw was nice enough, he didn’t examine me, thank god! This was working out just as I had planned it would. Well it was until I tried to get my prescription filled at the chemist. The pharmacist said “What is your authorisation number?” Authorisation number! What authorisation number!!!!!!!!!!!!

I paid that bloody GP good money for that script, and he KNEW, he must have known, it was worthless! I had to see an Australian Endocrinologist to get officially recognised as being entitled to receive my medication. Bugger. I went back to that bloody doctor and explained my problem and he just said “This is not a big concern, I’ll refer you to a local Endocrinologist.”

Yeah right!

I almost got there too. I rallied myself up to get there on time, to the right ward, I almost entered but I knew what was going to happen, and I’d had enough. I can do this without medication. That was my brilliant decision. When you’re hypogonadal you should not make decisions, they’re bound to be bloody dumb!

Australians are great people, if you go there to retire, with your New Zealand Pension, or for a holiday, but to live there you have to have a type of personality that wasn’t my type. I was ok whilst I had enough testosterone, but when I was buying ‘black market’ old stock from creepy characters, in back alley’s of the seedy side of Brisbane, Australians get real racist! They hate New Zealanders who work there. It’s a tangible hatred, you can feel it! I noticed it before my testosterone ran out, but after my irritability level just sky-rocketed! I was lucky I didn’t get arrested and deported! It wasn’t like I was abiding by the laws after all. I was buying steroids illegally! Of course there’s a lot of crap in the media about steroids, and the Australian media, they invent stories.

I ended up selling almost everything I had accumulated. I like to live comfortably, even now. I like ‘mod cons.’ I moved down to Sydney, the people there are much more cosmopolitan, I discovered. Even by other Australians Brisbane is described as a ‘big country town’ jam packed full of narrow minded racists! If you want to find a bigoted society go no further than Brisbane, you’ll love it! Just don’t be black, Aborigine, Kiwi, British, Japanese, Pacific Islander (any island) that’s to live there, visiting’s just fine, they’re more than happy to smile at you whilst they take your money!

I got job at an upholstery factory with all sorts of other immigrants. The employers in Brisbane were good to me too, they paid good money for my services. It’s the everyday people who can’t control their over zealous pride, that would be the best, most favourable, description of them. But in Sydney I was just one of millions of different speaking people. The Australians in Sydney are pretty hard to find, in the areas I lived and worked. New Zealanders sound different to Australians, and they notice it, we do too. They sound ignorant and uneducated to us!

Leaving Brisbane not that great an idea, really. I had my unreliable supply, but in Sydney I had nothing. Initially I lived in ‘Kings Cross’ at the time it was Sydney’s ‘red light district’ it may well still be today? They had a mono-rail passed over the top of it, or quite near it. It was like you could shop for a prostitute (or whatever else you wanted) from the comfort of an air conditioned, glass lined, cabin. That was pretty modern! The ‘room’ I lived in was initially shared with 1 other person, then more and more beds just arrived and by the time I left, and moved to Redfern, I think, there were 8 people living in there, including an American Vietnam Veteran. He was a damn pain in the arse, all he ever did was get drunk, throw up, sleep and piss himself!

If I wanted a room on my own I had to provide ‘services’ to the Manager, and plenty of people did, there was just some ‘work’ I won’t do! This is when I knew I had to get testosterone therapy back. The Manager wouldn’t have found me very helpful, I was completely impotent by then.

It was all my effort just to stay awake for an 8 hour day, and I could never do overtime, and there was plenty on offer. I could have done the same in that factory as I did in Petone, if I had the strength? It didn’t bother me doing the mind numbing slog, to advance. It’s all good stuff for an employer, they can see I’m keen, and they want to pay me more. Then they want more, and I want more, and it’s a snowballing upward effect, usually.

Occasionally I do that and it comes to grief, I’m just being used and getting nothing tangible in return, but that’s life! Males are renowned for taking risks, why would I be any different?

I ended up calling my parents collect, to send me a ticket back to New Zealand.

That was; humiliating.

Real MAN Crap

For some reason with some XXY guys they have this weird Real MAN Crap to promote, such as they were supposedly told they can only be a real man if they took testosterone therapy? I believe that like I believe in the Tooth Fairy!

I’m a real skeptic. I need EVIDENCE of claims made, and I’m quite happy to provide evidence of claims I make. My Endocrinologist was most helpful in providing information, just not the right level of testosterone, I was treated to XY average, not enough.

I had lots of questions, more than that I did homework too. I volunteered I’d given myself a sperm test and found azoospermia. I didn’t know what I found was called ‘azoospermia’ but my description of what I did was acceptable to John as a reliable method, and he wrote of what I’d discovered in medical lingo.

22 August 1977 azoospermia

I have never met another XXY man diagnosed with Klinefelter’s syndrome who’s done his own homework. It seems like I’m the only person who was interested enough in the words “Klinefelter’s syndrome” and the genetic signature “XXY” to find out what it all meant before I saw my Endocrinologist? I knew it had something to do with sex, when you get your balls crushed by, well by that stage, at least 4 doctors, you KNOW the balls are the problem.

I am alone. I am unique. I don’t need to be bolstered up by anybody else, as my dad said “Graeme has always been a loner.” Wasn’t that so nice of him to notice. I thought he didn’t give a shit about me. It’s amazing how wrong I can be!

1977 - psych report loner

My partner says I should visit her place more, now why do I want to do that? I know I have what she wants and she’ll be by, sooner or later, for her ‘man fix!’ We had a great laugh this afternoon, after preliminaries, about all the nonsense on the internet, and in books, about me and our other friend, Tiny! Of course you know why he’s called ‘Tiny’ as he’s the tallest guy I’ve ever seen in my life, much taller than any XXY guy I’ve ever met. Tiny is XYY! All I have to do is make myself known and all these other types just gravitate towards me. I have learned, being sociable aint all it’s cracked up to be, I like being a loner.

That wasn’t true in 1977 though.

Klinefelter’s syndrome 1976 to 1977 Deadly Serious from Graeme-xxy on Vimeo.

Amygdala in XXY Males

Oh no, oh yes! I might have to change my mind, now that I have research data I can trust, that XXY men who are homosexual may have a genetic argument?

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There’s a PhD. doctor out there, oh somewhere I forget where, you can find her on YouTube taking about male to female Transsexuals having a part of their brain more like that of females than males. I think it’s the Amygdala she refers to, Dr Veronica Drantz – it has taken me ages to find her videos, the right impression is not gained from just reading this.

So we know XXY individual’s do not have an entire extra X functioning, nobody with more than 1 X does. But there are XXX females, of course, and along with XXY men they have a smaller Amygdala, that’s an organ in the brain responsible for all manner of emotional things, and it’s linked to the Hypothalamus. XXY and XXX individuals are much more numerous that Transsexual male to female people, so if some correlation can be shown between the different strains of research into the Amyigdala and Hypthalamus, it may be possible to arrive at a common cause for the differences in brain structure between the 3 groups?

Oh Veronica Drantz doesn’t like me, she thinks I’m ‘too obsessed with my XXY status’ I think I’ve quoted her correctly. Anybody who has in depth knowledge of the diseases they’re treated for and speaks and writes of them MUST be OBSESSED! I can go along with that. And she also says ‘I should get on with my life’ that sounds like ‘shut up and go away’ to me, but anybody who makes a video anywhere about anything, and publishes it is automatically asking for responses. If the responses are polite and to the point they must be addressed.

Well I figure I am getting on with my life, it is mine after all. I don’t have to like you people, you people don’t have to like me, liking and not liking people is irrelevant. The only relevance is getting XXY boys diagnosed as early as possible and getting them the medical, educational, psychiatric care they need, when they need it. Everything else is superficial. Maybe this is my Amygdala at work?

According to the report I’m ever so slowly digesting at the moment, my actual Amygdala may well be smaller than any other euploid man’s Amygdala, and smaller than an XXX female’s Amygdala? The Amygdala’s being studied belong to 10 XXY’s and to 10 XXX’s along with 20 age matched controls, who would be XX and XY respectively, and 10 of each. Do you know what euploid means? Well aneuploid means ‘not the usual number’ in reference to chromosomes, so I predict euploid means ‘the usual number.’ 🙂
We are matched to euploid controls.

Barr Bodies

Yesterday I said that in the example I gave that the Barr body of the XXY male was smaller than the Barr body of the XX female, suggesting more genes are active on the inactivated X in XXY males. In Dr Veronica Drantz’s video series “Myth & Science of Sexuality” she uses a single example of the size of the nucleus in certain brain cells to show that male to female Transsexual’s brains are different to XY’s brains, and the same as XX’s brains, although the images she gives don’t look convincing to me. So all those who want to grizzle at me for using just 1 example of a smaller Barr body in the XXY male, can go grizzle at Dr Veronica Drantz too.

So the Amygdala has something to do with sexual behaviour too. The report I’m reading is actually about psychiatric disease more frequently seen in persons with additional X genetic material, bearing in mind that none of us with more than 1 X, have more than 1 entire X functioning in our cells. If you want to watch the entire video, you’ll find it here.

Last night I also stumbled across a report from Korea about Klinefelter’s syndrome, well it’s more about XXY prenatally, but the authors again don’t differentiate between the two. The key features that got my attention, which makes it worth getting, are the date, it’s from 2013. Abortion is mentioned, that very rare to find those kinds of statistics, the incidence rate in this report is quite high, and the advanced paternal age along with advanced maternal age is mentioned as an increased risk factor. That’s also most unusual, usually older ovaries are said to produce more XXY pregnancies, not older testicles!

Abortion is mentioned as a ‘pregnancy outcome.’ Of the 20 XXY pregnancies in this report, 9 were carried to term. 9 were ‘artificially aborted’ and 2 spontaneously aborted. Apparently the Korean’s needed a change in their laws to allow “Klinefelter syndrome” pregnancies to be aborted. In Korea it’s only been legal to abort XXY pregnancies since 2009. This appears to be a problem of understanding. In France the abortion rate of XXY foetuses was 46.9% and after proper counselling services were established that rate dropped to 11.6%

I’ll get back to you about the Amygdala implications later.

Resourceful?

So you think I’m good at this, you know talking about XXY, Klinefelter’s syndrome, and sex in general?

Do I NEED your support, sorry no. I have learned to live life alone, I don’t NEED anybody!

It’s probably a bad thing being self reliant, resourceful, talented, intelligent, need I go on?

If someone gets an honour from the Queen of England does it come before that persons professional title or after? Like Dame Margret Sparrow, is she Dame Dr, or Dr Dame?

More than just I am confused about that. If you’re a Sir, your wife if she’s female automatically becomes a Dame. But if you’re a Dame, like my aunt Dame Dorothy Fraser, her husband didn’t automatically become a Sir, is that weird or what?

Anyway I met Dame Dr Margret Sparrow at the old Wainuiomata College in the mid 1970’s. She was giving a talk on SEX, Sex Education precisely. Of course I thought I knew it all, I had an O Level in Human Biology, of course I knew it all, and I was young enough to say so! 🙂 The only thing I can remember of the talk was going into the School Hall, parents were separated form their offspring so that when the ‘group discussions’ started family members were not together.

A talk about sex and that’s all I can remember! That must have been 1975. It’s amazing how thoughts get concentrated by certain events at a certain time of life. 1975 was a nothing. Life began for real in 1976:

My Karyotype

I’m not the only XXY man who’s met Dr Dame Margret Sparrow. Both these two have met her too:

Michael Noble  & David Strachan XXY

And if you click on the this link you’ll be taken to the article they’re both mentioned in, or co-authored, or something? It’s all very interesting how all the same names pop up as the old groups fade away, and the new groups form. New people coming forward to espouse their curious understanding of genetics and endocrine disease are very rare.

Here is David Strachan again associated with AIC & Mani Mitchell, a few years later, just recently actually, promoting the Intersexions documentary, full of absolute drivel from the XXY men featured in it:
David Strachan & Mani Mitchell

What else besides being XXY do these two have in common, they both think they’re intersex, and they’re both homosexual. Gavan Coleman says he’s intersex too, does that get you wondering? Of course I say sexuality has nothing to do with chromosomes, or genes, or genetic influence, it’s all about choice. People who NEED to justify their CHOICES, NEED a genetic argument. They’ll have to look elsewhere, maybe it’s on an autosome, the homosexual gene?

Maybe it’s one of the genes predicted to be functioning on the inactivated X? I do say it’s outrageous to assume all XXY men have the exact same active genes functioning on the inactivated X, so why can’t this gene that causes homosexuality be on the inactivated X, or the activated X, or the Y? 😛 So is the homosexual gene for XY males on their mothers X, as we know they got their Y from their father! Do XXY men who claim they’re intersex, and are homosexual, KNOW for certain which parent provided their other X? I can’t say ‘inactivated X’ in this instance as it may be a gene on the active X, who knows?

I think I know, considering the number of boys in puberty who approached me for sex at Fernlea School, and Parkway Intermediate, and it was very enjoyable too, and later at Hendon Senior High School in London. Having sex with boys is definitely something all boys do, it’s just a part of life. Absolutely normal sexual behaviour.

You can always search the parents websites all over the internet, where ‘worried’ parents ask questions about masturbation, and seek justification for punishing their boys they caught masturbating with other boys! I wonder why they just don’t think back to their own puberty to know why boys do such things? It’s really enjoyable! Later, when girls become available, masturbating with them is really enjoyable too! As Quentin Crisp once said “Intercourse is a poor substitute for masturbation.”

From the DVD “Bad Education

Gee, I wonder if these boys were XXY too? 😛 Of course this is a fictional story, but I’m sure there must be some reason the original author included it in his film?

If you’re going to talk about me!

The previous post was going to get awfully long, so I had to make a cut off point. Michael Noble really is quite confused over the disease he’s treated successfully for. Klinefelter’s syndrome is the symptoms of that disease, and as such is not an intersex condition. Intersex is about presentation of genitalia at birth, and every baby boy has small genitals, because they’re babies. Everything else about a baby is small. If baby boys had adult size genitals there’d be a real problem, the kid would be genuinely sick!

This is the information I believed in 2000, but I continuously update my knowledge and Noble never does.

“Tucker (that’s me) (IFAS 2000) clarifies the position of the NZKA by stating that anyone
with Klinefelter Syndrome cannot be intersex, simply because only males can have Klinefelter Syndrome. He explains that:
those males born XXY, XXYY, XXXY, XXXXY and mosaic forms of these,
can go on to develop the disease Klinefelter Syndrome, but many of them
won’t. They will simply have or preferably, BE, whatever karyotype they
have (IFAS 2000, p.2).”

However I have now clarified my information even further, I now say “Klinefelter’s syndrome is the symptoms of disease, not a disease in itself.” An opinion which is derived from this 1958 report on Seminiferous Tubule Dysgenesis in male twins, the endocrine disease Dr Klinefelter et al (and others) originally described in 1942. Dr Klinefelter was correct, the symptoms he described were, and are, endocrinal in nature, and of course ONLY males can get it. It is not intersex!

Then our less than intelligent Australian XXY man Noble states:

“Consequently, it appears that a chromosomal variation has been completely transformed into an endocrinal condition that can be cured or, at the very least, concealed and thus rendered invisible, while the extra sex chromosome seems to have mysteriously disappeared!”
Representations of Klinefelter Syndrome – © 2010 Michael Noble Revised version (unpublished) page 14

Well this is the problem isn’t it Mr Noble, working what is of importance, the symptoms of disease, or the additional genetic material, and what should be first? So is the additional genetic material caused by the symptoms of disease, or are the symptoms of disease caused by the additional genetic material? And why is there such variability in individuals? Why do not all XXY men have the classic symptoms Dr Klinefelter described?

And where were these men by the way Mr Noble, they were at a hypogonadism clinic for males, run by Dr Fuller Albright. Do you think Dr Fuller Albright can tell the difference between a man and a woman Mr Noble? When was the last time you looked between your legs Mr Noble? Between my legs this is what I look like (god I’m proud)

Intersex, really, how blind are you?

Intersex, really, how blind are you?

Do I really make the additional X disappear? I’m such a clever clogs! It’s a bit complicated but I’m sure a person with a Degree in Creative Writing can follow along.

The additional X is inactivated. It’s called X inactivation. Kind of makes sense really doesn’t it! So as it’s inactivated why do XXY men invariably have fertility issues, hypogonadism issues, and educational issues? Oh and if sexual orientation is related to sex chromosomes a why aren’t all XXY men and boys homosexual, and why are some XY men and boys homosexual?

Barr Bodies

I want to you to study the Barr body of the XXY man, in that link above. I want you to compare it to the Barr body in the XX female person. I want you to notice the XXY man’s Barr body is visibly smaller than the female’s Barr body. Genetically speaking we are not like females at all, based on this evidence, we’re much more like XY males with a Barr body, which is exactly what we are, MALES with a Barr body, and forget about the larger Barr bodies of the others, they have many more than merely 2 X chromosomes.

A theory I have read suggests that the additional X is not completely inactivated, that there are genes in the body of the additional X that escape inactivation. As the Barr body represents the inactivated X a smaller Barr body suggests more genes are active on that inactivated X, why I mention the size of it. Since it is likely that not all XXY males have the same set of additional genes present, that could account for the variability of effect in individual XXY males?

Another theory I have read suggests that there is skewed X inactivation in XXY males, actually that’s no longer a theory, it’s a fact. Females have random X inactivation, and since we all are invariably infertile, this non random or skewed inactivation could be the cause of our infertility, and could also be responsible for our variability of other problems too?

Now you can bury your head in the sand for as long as you like Mr Noble, you can write as much crap as you want, you can pretend your Degree in Creative Writing affords you knowledge in matters you have no education in. You can also get off your arse and do something useful with your life too! Tall Poppies like me attract little shits like you. What else do you have to do but attempt to justify your sexual choices with wobbly genetics and accusations of religious bias?

Unbeknown to you the world of genetic research continues. What you think is true in terms of XXY research, and what is true, is a chasm apart. You just don’t know what you’re talking about. You seem to want to forget you have 44 unique autosomes, with your 3 unique sex chromosomes. Why do you presume to have the exact same genes on your inactivated X functioning, as I or any other XXY man has? We are not all the same, not genetically speaking, and we never will be.

Now go away and write something educated. You know, try hard!

Graeme Tucker
47 XXY for LIFE.