Not Uncommon

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

cropped-ktype.jpg

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.

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.

Discourse of Contradiction

I suppose the problem for XXY men really is they don’t have the facilities mentally to ask questions when they’re confused.

“The New Zealand Klinefelter Association (NZKA) was also established by the parents of sex chromosome variant children and adults born with at least one additional ‘sex’ chromosome.*”
Michael Noble – Representations of Klinefelter Syndrome (unpublished) – page 2

The NZKA was established by me and my then wife. End of story. Get facts, try hard!

[You see this here Michael, your little astrix note “* When referring to the additional chromosomes, I will refer to them as ‘sex’ chromosomes for convenience sake in order to distinguish them from other chromosomes.

Here’s some news for you, THERE ARE ONLY SEX CHROMOSOMES, all the rest are called AUTOSOMES. I can go in to detail as to why that is, but I think it will go way over your head. You need to research it for yourself. You NEED to edit your unpublished document, you make yourself look like a fool.]

I had assistance from CCS (formerly known as the Crippled Childrern’s Society), and various other professionals in the field of psychology and education, all the names of which escape me at this particular moment. Verna C. Raab, Educational Psychologist, from Canada, her best friend involved in some kind of secretarial work at Tairawheti Polytechnic, Veronica somebody? Other people too. Inland Revenue, they helped me write the Deed of Trust, the document that governed what we did and how we did it. So it had to be written as all inclusively as possible, without breaching the rules. You try doing that Michael Noble, write a thesis on it, see how far you get!

It was really hard to get people involved anyway, XXY men are generally unreliable, the parents of the boys are generally one eyed, the boys are too young. At the time we got going, we weren’t a charity, we were just a bunch of talented individuals, and there was only 1 XXY guy who was the driving force. I only know of 1 XXY guy who’s ever been a driving force, most of the rest are just groaning, moaning, lazy, miserable, little bastards!

It’s really hard work establishing a charity in New Zealand. Not that Michael Noble has ever attempted anything of the sort himself. He’s way too busy writing shit about people from his position of complete ignorance!

Helen, somebody, her son was the boy with Prader-Willi too, she was excellent help. One of the best parents of an XXY boy I’ve ever met, anywhere.

I couldn’t give a toss then, or now, what your sexuality is, what your gender is, who you fuck Michael Noble, it’s not important. You’re not important. You don’t have and never did have educational difficulty. You’re not a child missing out on an education, you never were. It’s the next generation that is important, getting them diagnosed early, they might even have sperms that can be collected and stored, if they’re found early? But you don’t give a shit about them do you, all you bullshit artists only care about yourselves, your gender expression, and your sexuality.

“Five years later, the NZKA Board changed the organisation’s name to the New Zealand Sex Chromosome Society (NZSCS) because, over the years, the Association had embraced other sex chromosome conditions such as Turners and Fragile X.”
Michael Noble – Representations of Klinefelter Syndrome (unpublished) – page 2

In reality we had to change our Deed of Trust to incorporate all the things we were doing that we were technically not allowed to do, according to law! Since we were always an information group, providing information first and foremost, not a support group, it seemed to the Board a logical step to do. Any information about Fragile X or X0 you don’t need to know, they’re not your sex and not your gender! They appreciate information. That you don’t appreciate them getting information just goes to show how selfish you are, and what I did with my time, and my money, was my business. Being questioned by some Australian git who wasn’t even a member, nor took the time to write an introduction, is hardly likely to be taken seriously.

“The Klinefelter community initially established these web pages for the purpose of distilling complex scientific literature into easily understood or popular narratives, while providing communication services for the discussion of issues relevant to the Klinefelter/XXY communities. They have achieved this, either by lobbying medical facilities and specialists into publishing popular information booklets and articles, or non-medical members have published their own articles based on their interpretation of the scientific literature.”
Michael Noble – Representations of Klinefelter Syndrome (unpublished) – page 2

We achieved something did we Michael Noble, that’s so good of you to say so. I got on TV, I did a huge amount, and EVERYTHING published on our website that was not OPINION, was vetted by John W Delahunt, Endocrinologist, or Johannes Nielsen, Researcher. It was medical data put in layman’s terms. We had a unique website. It was brilliant. There was no ‘patient or Board Member interpretation of medical literature’ it was all medical interpretation, thanks for asking!

The booklet “Understanding Klinefelter’s Syndrome – a Guide for XXY males and their families.” I’m the driving force behind the publication of that in New Zealand too. I still needed and got other people’s assistance, like Robert Bock the author, who almost made me reproduce it here. Unlike your crap there’s no copyright on it, it’s royalty free. So off you go smart arse, let’s see you do one for Australia. It will cost money and I won’t be lifting a finger to support you. Any one of you wankers out there who think you can do better are free to try. All you have to do is raise the money to pay for it, that should be a breeze as you’re so clever.

“….Rather, it is an attempt to undertake a very general socio-linguistic survey of the medical and popular discourses, in order to examine the representation of Klinefelter Syndrome/ XXY, and briefly link the discourses to issues such as the representation of sex, gender, sexuality and identity….”
Michael Noble – Representations of Klinefelter Syndrome (unpublished) – page 3

The above is the reason for Michael Noble’s paper, which is basically asserting his sexuality and the sexuality of other XXY men who claim they’re intersex, on the basis of their collective lies about their individual treatment, as if their lies were indicative of treatment over all. Michael Noble says he knows nothing of the therapy options, and it is his idea that one needs a University Degree in order to comment, attempting to shut down debate, like many of his crackpot colleagues.

His over-riding idea is that XXY is a different sex all together, and that testosterone they naturally produce is all they need. That he actually took, and probably still does take, testosterone therapy had to be worked around. In his blog he claims he ‘reduced’ his hormone therapy. The fact of the matter is he can’t assert XXY is a sex in it’s own right, and the level of testosterone produced is ‘normal’ and take ANY amount of exogenous testosterone, or he becomes a hypocrite.

Footnote on page 7 of his ‘paper’

“According to British law, physicians do not have to disclose details of medical techniques, nor the pharmacological operation of drug therapy: rather they are only required to provide information on the ‘goals and general nature of the treatment or drug’(Dickens 1982, p.238).He explains that physicians can resort to the ‘therapeutic privilege’ of non-disclosure in relation to procedures such as the administration of testosterone using intermuscular injections, in order to avoid having to account for their actions if they believe that the patient or parents may not comprehend the technical details of such therapies.”
Michael Noble – Representations of Klinefelter Syndrome (unpublished) – page 7

Michael Noble lives in Australia and I live in New Zealand, and what the British do is their business. I’ve not changed anything of his drivel, in fact here’s a screen shot, you can see they’re the same:

Noble drivel

This idiot has a University Degree by the way, but he can’t spell, even I know it’s ‘intramuscular’ but he’s so arrogant he didn’t bother getting his writings checked by a medical specialist before he released it for viewing. I can’t say ‘published’ even though for me to have a copy it must be ‘published’ but this is Michael Noble’s brain in action. Now you can also see this is an ‘updated’ version, from 2010, so if he knew so much about testicular volume and growth of XXY boys’ balls, how come he ignored this author, Ratcliffe 1999: an author he does refer to earlier in his ‘paper!’

XXY's balls

When crackpots like Michael Noble get an idea in their head, the last thing they want to do is include information that contradicts it.

I am more than happy to change what I teach as new information comes to hand. Such as I used to teach my balls were 1mL in volume at 17, and never were any bigger. However the likelihood of that being true is now zero, they must have enlarged at least a little in order for me to have that “good penile and scrotal development” and for me to have to wait for therapy, until my doctor was satisfied I had testicular failure:

asthenic_v1

Michael Noble never includes excerpts from his medical record, and never proves anything he says of himself, his therapy, his dealings with the medical profession. He just makes outrageous statements that look good to the intersex crowd.

1977a

XXY men are Untrustworthy!

QR Code Web Address

XXY men, specifically, tell lies. They make up stories, it’s well documented. They can’t, as a group, explain their own personal situation accurately. They invent scenarios to fit their particular circumstances, or circumstances they believe others will emapthise with. I have personal experience of this, not that I do it myself.

Recently one XXY man told me he had such a small penis that he’d never had sexual intercourse with his wife. My first query was ‘why would such a man get married?’ although I never actually said it to him. Then he followed that up with a claim he’d been tested for infertility and not told he was XXY after the process. So my question was “Why did you have fertility testing if you’d never had sex, surely you know why your wife wasn’t getting pregnant?” To which I received the comment ‘you’re putting words in my mouth’ and other such stupidity. If I’d made an error, if he didn’t have a tiny penis, if he did have sex with his wife, why did he say he didn’t?

Later he found me again on Facebook, and requested friendship. Then he had to have surgery and he loaned his Facebook account to another person, who took the opportunity to attack me ruthlessly, as if I’d done something wrong. The gentleman in question had made up a great long scenario of events that never happened at all, and then forgot all his story when he had to seek medical therapy, and loaned his account out to the person he’d lied to.

Prior to that time we were having a reasonably sensible conversation, but when his lies became evident to me he had to cut me off, I might complain! But no, I understand many of these guys often live in a world all of their own, not related to reality. Given enough time he might even apologise, or conveniently forget his detailed story? Such has happened many times in my life when dealing with XXY guys, who are prone to inventiveness.

Years ago it became almost a pastime to bad mouth me. I am the tall poppy, I am proud of my knowledge. That attracts a certain degree of jealousy. One XXY guy from near Wellington claimed I’d forced my way into his appointment with his Endocrinologist, who also happened to be my Endocrinologist too, and he invited me to attend one of his appointments. John Delahunt wouldn’t tolerate anybody forcing their way into any confidential meeting without consent, or being invited, and there’d be no force or coercion. That single most important fact was lost to the XXY man concerned.

The most recent ‘tall story’ involves an XXY man who claims to have never had puberty! He made his claim on video, which is published on Vimeo and YouTube, and we can all see him sitting in front of a camera with a goatie beard, that can’t have grown unless he did indeed have puberty. He also said “what were the biology books saying I was doing?” in relationship to puberty. That was another gaff. XXY boys start puberty normally. In one study the XXY boys started puberty at 11.9 years and by the end of puberty their penis was normally sized in 77% of them.

Penis 77%

Curiously this particular XXY liar made plenty of videos on YouTube, one where his mother interviews him, and we learn that she suspected he was XXY at 4.5 years owing to his behaviour, and got no assistance from the medical profession. We also learn she’s a Biology teacher. We learn from his current video that he had gynaecomastia, and nobody put 2+2 together. Not even him! He was doing what biology books would say if high school biology books dealt with diseases, but they don’t, they deal with what usually happens. He thought his gynaecomastia was terribly disfiguring and he has it removed, but fails to understand it is a common feature of puberty (that he says he never had) that can affect ALL boys!

gynaecoamstia

The report I’m giving excerpts from starts off with:

Unduly Pessimistic

Yet what do we find, the persons with the most pessimistic and outrageous stories are the XXY men themselves. There’s a particular anonymous XXY blogger on another site who misread this title and claimed the article was about length or life, not quality of life!

QoL

Even though I find the title disagreeable, it is accurate. One needs to read the entire report though before any solid conclusions can be drawn, and of course I have read it all. Even the authors themselves say their report has limitations. What they identify as the most important limitation I don’t even consider. I say the most important limitation is that these men with KS are being compared to a much larger population of men who are not treated for a chronic condition. If they were being compared to a group of men with Kallmann syndrome who take testosterone therapy, that would reveal some interesting results I’m sure.

The limitations the authors give are these:

Limitations

So, in common language, the group studied were not part of an XXY group who had no testosterone therapy. The group was small. There was no guarantee they were actually taking their testosterone as it was prescribed during the study, or at all. The group was probably of patients who reported more frequently other problems anyway.

My opinion, ‘XXY guys make excellent hypochondriacs!’ 🙂

These are the sorts of issues Milton Diamond PhD never considers, it seems, when he writes his reports on XXY men treated for Klinefelter’s syndrome. XXY guys are not the most trustworthy individuals you’re ever likely to meet! Whatever they say must be corroborated by independent, unbiased, sources. And have I said, I’m XXY, I know what I’m talking about.

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