Androgen Insensitivity Syndrome

You're conflating sex (Biology) with gender (how you identify) the latter is something we can change or adapt to,the former we can not.

Oh really?    Sex we can't change, physical sex you say, so how can someone tell me my sex is INTER when it was always MALE before I was diagnosed.... and after truth to tell.  

XXY is not intersex. 

They are KS (Kleinferter's syndrome).

The two women you met with XY chromosome (male), with female physically, are called AIS (Androgen Insensitivity Syndrome), in common parlance, they call them Intersex. 

Hi G

Pre diagnoses the presumption was you were XY Male,post diagnoses you were defined as XXY Male(notice the difference  Intersex describes differences of sex development.pathologically viewed as disorders.

Regarding your post further up the thread when you asked your Endocrinologist if you were Intersex,and he/she replied no,would you not think,even for the slightest moment that his/her reply was merely based on their personal opinion.You're a clever man Graeme well capable of agreeing with that view or not.

We are not born with Klinefelter's Syndrome,rather we are born XXY. Klinefelter's describes a male disorder,yet not all XXY's are male (gender) 

 

I agree we're not born with KS, and I agree not all XXY's are male.  However, not all XX's are female and not all XY's are male.  And I'm talking about physical sex.  

KS is the symptoms of a disease,  and that disease is called Seminiferous Tubule Dysgenesis (STD).  So, a  CAIS woman with XXY sex chromosomes can't have  KS unless she has STD and she can't have STD as she's impervious to testosterone.  None of her cells can respond to the influence of testosterone, not prenatally, or an any other time.

So Milton Diamond PhD is wrong when he describes a CAIS woman with XXY sex chromosomes as having Klinefelters syndrome.  Milton Diamond PhD also once described men with KS as 'Male pseudohermaphrodites' so he's used to being wrong.  

Yes even I assumed I was 46XY when I was studying Biology in high school.  I had no reason to compare my physical features to what I was learning, doing that never entered my head.  

I didn't actually ask if I was intersex, I asked if intersex could be used to descxribe us, us XXY's, in his mind males with KS.   I'd never ask anybody if I was intersex as I know what sex I am.

Well, the pesonal opinion of not just him.   He is  Dr John W Delahunt (ret) an Endocrinologist held in very high regard where I live.  He was influenced strongly by the American book I gave the title of, which again doesn't mention intersex.  And ALL XXY males have been treated according to that book, and later editions, throughout the whole wide world.

My Endocrinologist decided to ignore the Americans, when I complained of my lack of physical development.  Not all XXY's respond to the same degree to the level recommened by the Americans.  The Americans are very conservative.   I think they enjoy drawing illogical conclusions.  

So if an XXY boy who was short of testosterone sometime after the onset of puberty, gets into major fights at school, has learning problems, is bullied by others, is excessively tall, according to the American doctors he shouldn't be treated with testosterone, as they've observed XXYY boys' behaviour is worse when they're treated with testosterone.  They give the number and type of chromosomes no weight at all.

    

I'm finding it difficult to keep track of conversations on this forum,so I hope you don't mind my quoting you,and directly responding to that.

"So, a  CAIS woman with XXY sex chromosomes can't have  KS unless she has STD and she can't have STD as she's impervious to testosterone.  None of her cells can respond to the influence of testosterone, not prenatally, or an any other time" 

I vaguely remember that paper you speak of and can't recall a direct association with CAIS + XXY,which doesn't necessarily mean I disagree with you,only that I can't recall. In other paperss I have read over the years they all document a corelation with XXY + PAIS and use that mathaphor when describing how some XXY's do not respond to exogenous testosterone in the same manner as woud be expected of a typical male person.As a member and close associate of AISSGA,I can tell you that many AIS 'girls' have been administering exogenous testosterone for several years,and whilst it doesn't cause their body's to virilise in the same manner as say yourself,they do benefit from increased libido and psychological functioning.

"Milton Diamond PhD also once described men with KS as 'Male pseudohermaphrodites' so he's used to being wrong"

It was a long time ago Graeme,at a time when the discription of Intersex/DSD was as he called it,and whilst XXY may not have fitted neatly into that box at that time,when the discription was expaned to Intersex,the net grew bigger,though not as big as it presently is with DSD.On the subject of DSD,and Intersex,as the world is waking up to Intersex and the unnessary interventions on children (some of which border on cruelty) the DSD community, namely doctors and parent groups are trying vigorously to seperate the two and in that process are highlighting just how cruel some of those treatments really are.Another story best left until another day,or not at all.

Although our views on all things XXY don't always gel, it is good to see you active and helping others. 

"He was influenced strongly by the American book I gave the title of, which again doesn't mention intersex.  And ALL XXY males have been treated according to that book, and later editions, throughout the whole wide world"

Yes,they have been treated by that book,and that continues to this day,which doesn't mean its right nor accurate,only that its an American view on life and one deeply embedded in religious viewpoints.

"My Endocrinologist decided to ignore the Americans, when I complained of my lack of physical development"

I think you'll find that experience is typical of most 'specialists' which,once again,doesn't necessarily mean its right  only that you are his patient and he chose to do what was right for you,and as you well know, it does not necessarily mean it is right for everyone.

"So if an XXY boy who was short of testosterone sometime after the onset of puberty, gets into major fights at school, has learning problems, is bullied by others, is excessively tall, according to the American doctors he shouldn't be treated with testosterone, as they've observed XXYY boys' behaviour is worse when they're treated with testosterone.  They give the number and type of chromosomes no weight at all"

I know exogenous testosterone is your thing Graeme and you pretty much swear by that,so I can well understand your frustrations,so perhaps you might take heart in knowing,that is no longer the viewpoint of the American's who are now subjecting XXY fetuses to small amounts of testosterone and 25mg at four months,six years,and eleven years respectively.In your book you might think that's pretty amazing but,in mine its anything but.

Not agreeing nor disagreeing with the school yard scenario but, I might ask you do a search of Google Scholar "Case Law" XXY and see first hand the high number of XXY's who are incarceated in the US for all sorts of crimes,which to me is rather frightening and none more so because no one understands their plight.

Administering exogenous testosterone might seem right to you in that situation but,XXY children as with XX and XY children all grow up to be adults,only the former group lacks the appropriate life skills of their 'peers' and when you combine that with a dysfunctional family enviorment (as is sometimes the case) you create a recipe for disaster.Which is not to say all XXY's will have that experience but, I think you will at least agree,this path we thread upon (if I may use one of your quotes) can be akin to pushing sh*t uphill with a rake, 

I can't believe my comments are being moderated,what kind of a forum is this ?

I sent you a message 2 minutes ago and once again it went to a monitor because I mentioned a cream that would help with skin that looks like wood bark. It was a reply to a woman who just got out of a cast and wondered what she could help with her dry skin

I'm not privy to the inner workings of the Moderators mind, but if your comment has a link

In it, it'll be checked for appropriateness.

Oh well, we'll keep you on, praise goes a long way with me.  

So where would be the right place for a chat about the appropriateness of infant genital surgery?  It's not a common surgery for XXY boys, oh apart from the  Americans ans their addiction to circumcision.

I believe that most American doctors believe all male infants must have surgery to remove their foreskin without any anesthesia. Some individuals see that as cruelty, maiming infants and those doctors should be punished. That has never happened. I don't think any punishment will happen in the future.

In some European countries, infants ate allowed to keep their foreskin.

Changing attitudes about infant pain and suffering in America will never happen in my opinion.

Also years ago, a well known doctor who changed a boy into a girl with surgery, assumed at the time that he could change the identity of the boy and every doctor at the time assumed he was correct. He the the parents to dress her and call her by a female name.Only when the girl grew up, she always knew she was male. He was outraged that he had been changed to the wrong sex. this famous doctor's research is outdated. Yet, I had not seen a retraction of his findings. He wrote a book on xxy and sex in-between, I don't want to mention his name because my message will be sent to be moderated. His last name starts with the letter "M". He wrote several books.

I can tell this site to sign me in and remember me, but it never does remember me, I'm forever having to sign in!   Anyway, about testosterone, yes it's definitely my thing.  

So firstly, according to research, all XXY boys start puberty.  I know there are plenty of XXY men who caim they didn't, one even claims he didn't whilst at the same time showing a picture himself  in puberty.  Maybe they're so old they can't remember?  Or maybe their poor short term memory is givng them grief?  Even the fellow who had XXY/KS adopted as 'intersex' started puberty.  Trouble is it doesn't proceed, puberty almost always stalls at some point.

I've met plenty of XXY older boys and teens, and not one of them expressed a desire not to have puberty.  Boys want to be like their older brothers and fathers.  Oh and of the XXY's I know about who developed gynaecomastia, none were diagnosed XXY becasue of it.  Isn't that curious?  Well, I think it is. 

Then most XXY are not diagnosed at all.   That suggests all sorts of things from their doctors just don't care, and they don't have any kind of symptoms, to they have plenty of symptoms but nobody bothered to find out why?  

I recall when I was 16 my best friends' mother commented on how little body hair I had, and her son who was a year younger than me, was covered in hair.  But my parents didn't notice. I was the oldest son and my friend was the 2nd youngest, with 2 older brothers, so his parents had more expereince with sons.

Then there's the Americans.  In Denmark ALL XXY's are found at birth.  And their testosteorne is measured, and they're found to have the same level as XY boys, or within the same range as XY boys.   So their graph looks very full with dots plotted all over it.  The Americans don't look for or find XXY boys at birth, but some are found prenatally, becasue their mothers  fit the right criteria for looking.  These are much fewer in number and a selected group, selected by the age of the mother.  And they have their testosterone measured too.

So it turns out the American graph is much more dramatic.  Much fewer participants and a much steeper graph.  Most of those XXY boys have testosterone in the lower end of normal for males, and a few in the very high range of normal for males.  

So Americans see much more obvious problems associoated with low normal testosterone for boys.  Of course they do, they're only looking in the group of mothers who are likely to have sons with low testosterone problems.  It seems mothers especiially are concerned about the length of their sons penis.  So, do older mothers have sons with shorter penises?     Well maybe they do if their sons are XXY?  

So if a doctor approaches a mother of a prenatally diagnosed XXY boy and tells her, her son will have a shorter than normal penis, do you think they'll be swayed to let the doctors administer low dose testosterone in the womb, or soon after birth?   I think there's a very good possibility that will happen.  Flawed logic though, as the boys are not guaranteed to have a short penis.  Oh and their penis in adulthood won't be any bigger than it would be if they had no testosterone.  This is testosterone given just to please the mothers.

And do I approve? Hell no, I only approve of  teenage boys who have shown a medical need for testosterone, to be treated with it, to keep them up to date with their peers.  Before puberty boys don't give very much thought at all to the length of their penis, and why should they?

I forgot to mention the boy who was turned into a girl and was raised as a girl per instructions from Dr Money. was because during circumcision his penis was accidentally cut off. So the doctor thought if you raise a child as another sex then that child would become that sex. As I stated before, that girl knew she was not a girl and is now a man.

Hi Graeme,you might be surprised to hear,I pretty much agree with most you have said here,and will only add how the American's have turned the treatment of XXY's into a business much like a production line,where they intervene at the earliest possible time and then spit them out like bubbles to parents ill equiped to address the needs of a juvenile experiencing puberty.Which begs the question, why should a parents insecurity of how their child should present be allowed to take president over what the child wants or needs.There's always a better way but,typical of most things American,they simply never listen.

If you can PM me an email address that works for you,I'd be happy to send you on a pretty intense book that horrifies me,and I suspect from what you have described above,will have the same effect upon you.

As with XXY and al things life,best outcomes are achieved when the individual being subjected to pathological views of who we are,is fully informed of what's expected of them,unfortunately that's very rarely the case with children......

Yes, I'm aware of the David Reimer story, and his brother, both of whom committed suicide.  However there is more to the story maybe people want to know or remember?  Dr Money was being interviewed about his theory on gender, claiming it was set sometime in childhood, and was fluid until then.  Davids mother saw that interview and contact the Dr asking if there was  a way of helping her accidentally penctomised son.  

Now then, it's a that same of story or who knew what and when they knew it scenario.  David didn't want to be Brenda, and protested vigorouisly.  His mother thought Dr Money wanted to hear any news and made up a positive outcome, and Dr Money publised reports on what he was told, but didn't actually check their truthfullness.  Eventually Dr Milton Diamond  tracked down David, as he wanted to know what the outcome of it all was, and it turned out the published reports of Dr Money were all wrong.  Milton Diamond helped David get compensation, but after years of  surgeries and hormones, and all that crap, it became too much and David sadly gave in.  He killed himself, as did his brother before him.

And of course, if it wasn't for circumcision, none of these events would have ocurred.  Twin boys would have lead perfectly normal lives in Canada, and we'd most likely never have heard of either.

    

When I first heard of this early intervention with testosterone I contacted the Executive Director of the KS&A, Jim Moore, now retired.  I didn't think it was a good idea.  He doesn't like me, period.  So anyway, my questions were all answered in a FAQ he had published... and my first thought was "how come only questions I raised are answered?"  that FAQ was supposed to have been prepared for all parents before I was aware of the proposal.  

People from America aren't likely to track me down to tell me anything, so  how can it be that from no communication with anybody with an XXY son, can I be the only one with those particular concerns?    I think that FAQ was made for me, to shut me up, People like to shut me up. 

So, I know years ago Melisasa Aylstock (the founder of the KS&A) wanted to experiment with XXY boys and testosterone, but she was convinced, (or prevented from doing it),  that ethics did not support such a regime.  Only the Americans have pursued this unethical regime. None of the boys were shown to need testosterone therapy,  and on the other side of the equation some boys were prevented from having testosterone even when they showed a medical need. They were given a placibo.  

It was argued this experiment was only to run for 12 months and wouldn't impact the boys who were denied testosterone greatly.  And they were going to be monitored by an Endocrinologist so that if they showed extreme  deficiency they could be taken out of the placibo group.  

The second experiment, again under medical supervision, yet just as unethical IMO, introduced low dose testosterone therapy prenatally, or soon after birth, just to see what happens.  The boys had no medical need, they are human guinea pigs.  I asked the principal investigator to send me the ethical argument supporting it, and it never arrived.  So I don't think there is one.  

I don't at all mind adults giving informed consent to testosterone, or not testosterone, therapy,   but simply giving it prenatally, and to babies, and to children for no medial reason, is clearly wrong.  

If they do have problems, how do their doctors know it was the testosterone that caused them?  And if there are no problems how do their doctors know it was the thearpy that brought that outcome about?  It's just bad science.  IMO.