Banding Study of 47,XXY and variants population

 I often allude to a not terribly scientific study that I have done for my own research.  Have no plans to publish, ever.  The study is a composite of more than 400 XXY people from all walks of life, using a variety of treatments including testosterone and estradiol.  They are matched by baseline hormone assay's and placed in percentile groups on a linear chart.  The break down of simple banding into 20th percentiles along that chart clearly demonstrates that there are distinct groups or bands in the XXY population, and one can infer from these bands whom will benefit most from testosterone or estradiol therapy.  It is possible in most cases to infer what gender identity the individual will have, male, female, or intersex.   It is remarkable how little is actually known about people XXY, and it is abundantly clear that the majority of the population is not and has never been male.  Forcing the XXY population into male for the convenience of not really providing treatment has resulted in poor outcomes for the past 50 years.

 Did you know that no one has yet published a study which (including Dr. Klinefelter) actually identifies the 47,XXY and variants population?  

 Klinefelter's studies all describe the natal male and variant population which believes itself to be insufficiently masculine to be male.  His studies rightfully so describe those people to be less than average in most cases in IQ.  These studies have very little to do with 47,XXY people except that some XXY people are affected by Klinefelter's Syndrome also.  

XXY is a genetic marker, just like XX or XY is for natal females or males.  There are females whom are XXY, there are males whom are XXY, and the rest are generally considered to be Intersex in that they live in both gender's.  At the moment the DSM-V takes exception to anyone using the term intersex, because their dichotomy of gender does not allow for fluid existence in more than one.  Most of the documentation, although this is slowly changing, published by the USA National Institutes of Health have been highly negative and severely lacking in facts of any form.  

Can you believe it took the medical community 40 years to finally publish in 2012 the known fact that XXY females exist?  

The medical community has known of XXY females for more than 40 years, but it is an inconvenient fact that normal XXY females can bear children just like ordinary women.  The problem is that they have been pushing all XXY people into a testosterone only forced masculinization program for those 40 years.   And the XXY population except for the 5th banding group has had very bad results, some have died as a result of testosterone use and forced masculinization protocols.

XXY people are not MALE, except for the 5th banding group.

XXY people are not FEMALE, except for the 1st and 2nd banding groups.

XXY people are often INTERSEX, including the 3rd and most of the 4th banding groups.

I've been tracking this data for about a decade, but it would be nice if an agency like the National Institutes of Health would do a formal scientific study on not just a few hundred known XXY cases, but the necessary tens of thousands to establish the population.  Until this is done, all of the work on XXY people as a class are little more than presumptions or are seriously flawed and probably cannot be trusted.

47,XXY and why the "t gut" is not based on testosterone

 

I wrote this in response to a question on a facebook group regarding the horrible Testosterone GUT that XXY people develop which is similar to but not the same in most cases of XXY to natal XY males.  XXY people are not natal males, for the most part, some few are fortunate to be able to exist in the male paradigm and experience male based care without issues.  Most XXY people require a balanced approach with charts in both MALE and FEMALE with all aspects of both genders openly discussed and dealt with.  Just like women, balancing estradiol is perhaps the single most important issue for most of the people whom are 47,XXY or variants.

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When you take testosterone the presumption from the Doctor is that it will give you a HUGE kick in the ass to get out and DO life, ie .. lots of physical work. Some people would call it play, because they are working .. HARD.. at playing and having a great time doing it. Others spend alot of time riding their bikes long distance, in gyms trying to impress other guys, or hiking, skiing, etc. Men whom do not actively participate in life end up with fat, primarily in the gut. What it means to have the T gut when you are on testosterone is that you get too many calories and don't use them.

Now there is a second group whom should not call their gut a "T" thing, and this includes people who do not have so much testosterone like the average XXY person whom on Australia's  scale of nmol/L would be down around 5 nmol/L or less, or in the USA on ng/ml would be under 300 ng/ml. That is because when your hormone levels are low, fat develops so that you can process what little testosterone you have into estradiol. The fat is an organ of the body which translates Testosterone into Estradiol.

My point is this... regardless of how much testosterone you take, the Body NEEDS estradiol. And it will get it one way or another. The body could really care less about testosterone, despite that it takes testosterone to be a Man. The body HAS TO HAVE estradiol or it DIES. There is no ... oh you only need estradiol to be a woman. The BODY, Organs, Brain, and everything in it NEEDs estradiol. If you starve your estradiol supply then you will get fat when the body goes into survival mode and starts converting testosterone to estradiol.

So if you are doing it all "right" taking T and working out, and eating right... and you cannot get rid of the "T gut" then your estradiol level is low. Simple. Most guys do not require alot of estradiol. Most XXY people require anywhere from 3x to 10x as much estradiol as Men, and generally about half as much as women average in their middle years. I wrote REQUIRE for a reason.. starving yourself of estradiol will make you fat. The body/brain system will get its estradiol one way or another, regardless of what you want to happen.

Now.. I often talk about the banding study I did for my own research. Anyone in the left 4 bands (of 5) will absolutely need to balance their estradiol levels despite any desire (generally the 4th band) to take testosterone. The only group which can for the most part not worry about estradiol balance are the 5th group or right most 20th percentile of the XXY population, whom identify as male, take only testosterone and need nothing else barring significant other problem. About 80% of the known... based on my research of actual people whom are known to be XXY, need to balance their estradiol levels.

ps... most Guys.. do not eat well, exercise enough, or take care of themselves in any way. Which is why hormone balance is among the last things doctors will look for.

Reflections on the Past - Schools and Bullies

My experience with schools pre-college was entirely an ugly affair and I cannot relate to what children experience today.  The experience was so horrific that I don't often describe those events to anyone.  You might say, I have a thorough understanding of why a person might choose suicide.

Let me give you a snap shot so you understand the difference is literally night and day between the schools of today and those in 1975-1990.  Please keep in mind the overt hostility of public school staff has largely been removed from society in this age.  For most of my years in school I was short, not well muscled, and not strong like boys are expected to be.  And there was an agreement between my parents whom were terrified I would grow up to be gay, ie. I, the female identified gender-neutral child, they had adjusted to male would grow up to like boys. Imagine that.  But no, they filled out paper work which said I would be a boy, therefore I had to be a Man, at the age of 5.  From 5-11 grade school was mostly tame, some fights here and there, nothing that differed too much.  After all, until 4th grade I was the same size as everyone else, just another kid.  By fifth grade I was starting to stand out and 6th grade wasn't much better, kids were starting to grow faster and taller, except me.  Grades 7 to 12 however, were a nightmare.

In the 7th grade I was suddenly (unusual for XXY I know) not tall enough to keep up with everyone else.  I looked wrong and was excluded from all groups.  Imagine that, a young "girl" didn't fit in as a boy, not at all.

By the 8th grade the damage was done, I was a target for all bullies with the tacit approval of school staff and worse, my parents, who were so terrified I would be gay.  So it began 3-5 bullies would accost me, and I would either flee successfully, be cornered and talk it out, or be cornered without an adult nearby and be tortured until I fought back.  Which actually means that for most of the 7th grade I was cornered and beaten down by a group of bullies whom were all larger, stronger, and much more willing to hurt people than I was.

By the end of that year, my parents finally decided I needed some help to stand up to the grueling punishment of bullies and they enrolled me in the martial arts.  Little good that did, the martial arts takes many years to become capable.  That summer, I learned that fighting back at least gave some satisfaction to being beaten down... quite by accident I managed to hurt one of many attackers.  My parents had long since instituted a policy that my complaints were but lies, and would automatically believe whatever story of my misdeeds from others.  Being "grounded" was a place of safety, what a fine discovery that was.
 
I learned early that if you want bullies to avoid you, then you had to be the meanest evil person they could imagine tangling with.  If they brought sticks, I needed a Knife.  If they brought chains, I needed a roll of quarters and a razor blade.  And I couldn't threaten them, it had to be quick, you attack me ....I cut you.  No hesitation.  You and your posse of bullies corners me, I have to hurt you badly so that you FEAR me enough not to do that again

I learned to find safety in punishment details.  A gang of kids would attack me coming or going to school, it would get vicious, people would get hurt, and I .. I alone, the only participant with no friends present, five, six or seven to one, of them all, I would be singled out as the bad one and placed on a punishment detail.  Little did the powers that be understand, those adults so willing to turn a blind eye to the bullies, a "punishment detail" was actually an Adult supervised event.  Thats right, it was a SAFE place.  None of the bullies would try to hurt me there.  The school staff person might be down right mean, but it was VERBAL.  They would not attack me physically, which made it a safe place.  And if I was lucky this would occur during periods of inattentive monitors by adults, ie.. lunch, before school, or after school.  The bullies were much too lazy to wait two hours after school for me to leave a punishment detail, or to get up two hours early to goto school to ambush me.  Sad, no?  Formal punishment the only SAFE place for children at school because it has Adult supervision, and the only place where the Adult present cannot turn a blind eye to physical assault.

Ugly, no?  That was 8th - 12th grades, and the bullies never entirely went away.  The combat escalated.. got more vicious and bloody with every year.  People got hurt.  Permanently hurt.  I'll let your imagination run with this, but if you can imagine it.. it probably happened.  The only thing we didn't have (fortunately) was guns... everything else got used.  I have ugly memories of high school, and no wish to revisit them.

My parents signed paperwork and paid money to have a boy.. unfortunately nurture didn't trump nature.  They got a messed up girl with the skill to survive street combat and smart enough to get herself straightened out enough to soar into the future.

That said, I haven't forgotten, forgiven, and if anything the pain of those days still burns behind every dark moment.  Public schools sucked for me, because I didn't look like a boy, was not a boy, and could not fit in with boys.  Sucked as a term doesn't do it justice... I understand why so many children would be willing to commit suicide rather than attend public school.

XXY: Elf Zombie

If you wondered, why progesterone is such an issue.. aside from the complete lack of studies. For estradiol and other hormones like testosterone or even DHEA where are a myriad of studies available.  The data for this peculiar issue limited at best.

If you tested every person in the entire State of California seeking those without a measurable level of progesterone there are about 20 people in total.  This is not a well known or studied issue.  Indeed the first lab on my first test for progesterone actually queried the doc and asked if the patient was living, as their equipment and results suggested either the sample was of a dead person or their equipment was faulty.  The same lab ended up providing several sets of data for each of the 4 vials of blood provided once a week for a month.  The lab didn't believe their own data.  No progesterone equals DEAD. 

Everyone once in a while I refer to XXY as "Elf".  This started sometime in the last year while beset by dozens of documents and ideas from various parts of the medical profession, bloggers, writers, and other newies who all wanted to label me.  Somehow I had to be a DSD, variant, disorder, targeted for extermination, Intersex, activist, transgender, transsexual, man, woman, thing... it was too much to explain to people I was XXY, that I care about achieving good health care more than being the epitome of a gender, or a sex.. or having a life.  Elf has benefit, no one asks me what gender I am, when I reply, "Elf".  Some of them go a bit weird and dreamy though.  On the plus side those ugly statistics for rape, shows remarkably few elves are ever raped, beaten, or punished for being in the wrong restroom.  The counts for elves bullied are at a resounding 0.  All good so far, and if even one person bothers me then there will be a 100% loss of confidence in elves ability to participate in the USA like any other class of, say, white citizens.  Nice, huh?

 So this means I'm an Elf Zombie !  Yay!  I think...

Progesterone Challenge

Hard to believe another year has gone by.. almost.

I've moved on from some of the challenges which struck, or that I dredged up because at 40 its long past time to settle some of those issues of the past.  Clear the mind, relearn to accept the self.  Accepting.. is difficult for everyone, I'm no exception there.

This years challenge is progesterone, and unlike 99.999% of the population I don't have any.  And I realize in the realms of doctors that limited the pool of candidates for who the "Onnineko" is to a very small group, integrity we hope will win. :) No one is offering rewards for me yet!  We'll see.

So progesterone, most people, male and female alike, exist at about 0.5 ng/mL or a bit more and the major exception is a pregnant woman who will be in the hundreds.  This is literally THE HORMONE of life, every organ in the entire body uses progesterone, so you can probably imagine my surprise that I don't have any.  Similar to individuals with the extremely rare expression of Congenital Adrenal Hyperplasia (CAH) 3Beta-Hydroxysteriod Dehydrogenase deficiency ... (to the doctor team who knows me, I know who you are too).

This past year, specifically, and years past in general I have been experimenting with what this means to have no measurable level of progesterone.  Studying why, what effects that matter, and the how/whys of treatment.  Some of them make sense, some don't... and only 1-2 researchers/highly decorated docs need to die before the medical thinking will change to a more beneficial pathway.  That is perhaps my most significant gripe with the USA medical system, they will stubbornly cling to outdated notions for decades until the original writer dies. 

Supplementing progesterone however, is not simple, unlike say taking a major sex defining hormone like estradiol.  The packaging and doctors tell me its lifetime is 20 hours, wrong.  I've found through trial and error that for.....ME.... its under 13 hours.  Which means if the me I know and trust who is smart, witty, and on top of life suddenly runs out of progesterone (a Major hormone, drives everything really) there are consequences.  For me it means the anxiety of changing hormone levels builds rapidly, most menopausal women will have some understanding of what I mean by that.  Worse for me, personally, the anxiety and panic of crashing hormones pulls out the stops on Gender Identity Disorder.. which doesn't pull any punches.  The GID problem will probably kill me someday, if it doesn't get resolved, but it is not the worst problem.  The GID issue is only a problem when my anxiety levels are up from cascading or changing hormone levels.  So yes, really its a problem that can be masked by leveling out the hormones and keeping them there.

By rights, I should simply admit I'm female, have the docs fix the problem.. be a woman, and move on.  Then I'd be just like most other menopausal or hyster-deprived women, experiencing rapid mood swings from hormone levels which just won't stay level.  Awfully tempting to do that, as it would release one of the worst nightmares of my life - the idea of not being female.  I've thought about asking the medical establishment to undo their work, take me back to the hermaphrodite I was before they "fixed" me.  Perhaps that would be enough.. and the specter of GID would leave me alone at last.

Either way, supplementing progesterone is likely to be something each person has to learn what their individual body needs and what kind of burn time you each have for it.  Most people as I said, the 99.999% don't need more progesterone, your body makes plenty.

Onnineko

ps. I need to resolve the GID issue.. damn.

Savant: Aspergers and 47,XXY

I cannot write this, it hits the page with all the narcissism dripping with sarcasm someone truly angry with the world for this ... colossal bit of grand scheme humor.  Should I ever meet this God we are going to have a long discussion on Congenital Adrenal Hyperplasia, Klinefelter's Syndrome, Asperger's Syndrome, and why ... WHY! ... I was born an ambiguous female.

Writing as such, why is it such a foul paw to harp on genius?  Savantly adroit.

What:
    in _____'s name caused my parents to suddenly, bereft of common sense, decide to raise me as a boy?
   ... part of will NEVER fit in did those parents not understand?
    ... at what point did they plan to .. EVER.. tell me the truth about this .. little issue.

Why is everyone else embarrassed, they're not living this ridiculous lie.

Even now the anger is seeping in, there isn't much to do about that... I refuse to follow the ideal that I am in any way handicapped or disabled.  It is absurd that I... could be handicapped or disabled with an IQ in the stratosphere.  There written, quite enough genuflecting.

Most people with even one of these issues has significant major problems, somehow I dodged that bullet.  Not obviously the fallout such as osteoporosis, but I found a way to eliminate that as an issue.  There are other problems most of which have been carefully researched and eliminated.  Not all people with these conditions have the ability, time, ability to understand, learn, or overcome the challenges; I get it, and hope that you do also.  An Onnineko is a diamond in a suit of one.

And I hate my life...

Does estrogen feminize XXY's?

The activity of estradiol concerned me a great deal when I was looking at estradiol (for 6 some years before trying it)... I'm feminine enough, no more needed. The real concern though was osteoporosis and breast canc

er. I have a rare reaction to testosterone that makes it toxic, just won't work for me. Osteoporosis is an expressed lack of estradiol acting upon the bone structure, thats where it started for me, I needed to get my levels up a little higher and couldn't choose testosterone. And.. I identify female so testosterone wouldn't have been an option anyway. Still.. I was looking at osteoporosis which is way more scary than the feminizing issue. 

Then there is all of this documentation about transsexual males who change to females, and they take massive doses of estradiol as well as testosterone blockers, as otherwise the testosterone they produce naturally would suppress the activity of estradiol.  Individuals whom are XXY often find they have naturally elevated levels of estradiol.  Note to doctors, it is NORMAL for an XXY person to have high estradiol, and they should be treated for both.  Bad doctor... bad.. no cookie.

So.. does estradiol cause feminization of a "masculine" XXY person..

Now we really have to talk about how testosterone affects the individuals body, because each person has a different level of sensitivity. If someone with a low sensitivity, whom also has natural testosterone levels about 7% of scale (very high for a female) then that person will not feminize from taking a low to moderate dose of estradiol. This is because it takes only a very small amount of testosterone to offset estradiol activity.

Imagine for a moment that you have small glass and large jar which can hold 1000x as much fluid as the glass. One unit of testosterone will fill the jar for each unit of estradiol which fills the glass. Or about 1000 units estradiol = 1 unit testosterone. So very little testosterone is needed to eliminate the feminizing effects of estradiol. Come to think of it, most XXY guys produce enough testosterone that any low or moderate amount (depending on sensitivity) will not cause feminization.

 So everything aside, anyone taking massive doses of estradiol in the absence of testosterone will experience feminization.  The goal for XXY people is not to take the maximum or even large doses of any drug, but to work with medical professionals to design an individual best case.

Onnineko