Friday, December 27, 2013

Banding Study followup...

Several people have expressed interest in the "non-published quasi-scientific study" I did for my own understanding of the XXY phenomena and how we respond to hormone intervention.  Its quite a alot more broad a topic than I have revealed to date, but the rest is mostly for my own understanding.  None of the work to date is documented or referenced because I do not want anyone picking up and republishing my work.  If the study were to be published it would be in a doctoral level peer reviewed medium.

So I have a couple of ideas for you, specifically for XXYers to better understand youy own predicament.
1. The study is devised on a concept called percent of scale, meaning that the banding group participants (male, female, intersex) which come from all parts of the world and from many testing environments can meaningfully compare their results and base hormone assays with others.  For example, someone doing a testosterone test in Australia might have a result in nmol/L in the range of 0-30, with a normal male range of 12-30; While someone in the USA might be receiving results in the range of 0-1000, with a male range of 350-900.
  • Different Ranges of Results: Every company or state which does hormone testing uses devices which produce similar results with in a common error, but they are not the same. Even a lab corporate giant like Quest Labs in the USA which has testing centers in every major city (dozens of centers) has variance in their absolute ranges reported in their tests.  This is a result of using different machines which affect the total range as well as other issues which result in larger or smaller known error.  
  • Error is scientific term of absolute value, known to be correct withing a range of +/- some much smaller value, and we are dealing with very small numbers indeed in the nano and pico ranges.
  • We can talk about estradiol in the same fashion as testosterone, although its chemical range identifier is different representing even smaller quantities as pg/ml and pmol/L.  The 'p' is pico.
  • Testosterone is expressed in ng/dl or nmol/L, and the 'n' is for nano.
2. The concept of percentage of scale is specifically the absolute value of the resultant test as a percentage of the scale represented.  For example:
  • A result of 100 on a scale of 0-1000, is 100 divided by 1000 equals 0.1.  We interpret the 0.1 on a range of 0.00 to 1.00, or we multiple the results by 100, either way the percentage of 0.1 is 10%, or .. 0.1 x 100 = 10%
  • A result of 4 on a scale of 0-30.  4/30 = 0.133333, and we only care for this exercise about the first three digits so 0.13 is our answer, which is 13%, or 0.13 x 100 = 13%.
  • A result of 240 ng/dl on a scale of 0-1200 ng/dl, is 240/1200 = 0.20 or 20%.
3. The bands in the study are a reflection of the base hormone testosterone pre-treatment with any supplements and then tracked on graphs that correlate:  X axis: percent of scale of testosterone (0-100%) to Y axis: quantity, second as LH, FSH, and base estradiol level. There are several ways to interpret the graphed results.  I can ascertain with a high degree of confidence several factors of the individuals life including gender identity and preferred case for hormone treatment from the results.  The bands reflect the five groups which are then apparent upon the graph broken down by base testosterone quantity.

Bands:
  1. Range below 4%.  Female.
  2. Range below 6%.  Female or Intersex.
  3. Range below  9%. Female or Intersex.
  4. Range below 15%. Intersex or Male.
  5. Range above 15%. Male.
Following the bands and interpreting the additional data it is fairly simple to determine the gender of the person, their gender identity, their hormone balance levels, and in simple determine how to better manage the XXY hormone replacement process.

If I can determine and hold a high degree of confidence in the results, then it is absolutely criminal what medical practitioners are doing with their forced masculinization process that is being applied to all XXY people under the "recommendation" they be given testosterone by default.

Seeking a credible PhD who would like to study and establish the population of XXY people.  Please inquire.  Thank you, Onnineko (onnineko@gmail.com).

Wednesday, December 25, 2013

Moving Forwards...

Really, what can we ask in life: Health, Energy, Spontaneity,  Sophistication, Friends, Love, and great Food, right?

Well before all of that we have some assumptions like enough food to eat, shelter, and an expectation of those remaining sufficiently static to have leisure time.  Yet before this there is another layer and that is fundamental as breathing, it is achieving normalcy of gender congruent to ones understanding of their natural being.

For years post high school, I an XXY person, has forged a path through life; Slower, more focused than natal men and women.  It took me 20 years to have a first date, and another 4 to meet someone I cared to try a kiss.  Intercourse took much longer.  I have lived as a boy, girl, woman, man, and of late in between.  Often the path of least resistance, or which ever gender caused the least controversy.  All things in their time, with alot of life in between.  Gender was put on hold so often that it seemed the world of children could pass me by entirely, and it did.

Don't misunderstand, I have done some amazing things in the past few decades, gone places most only dream about or see in movies, intensely trained to the senior level in more than one profession, traveled extensively, etc... I do not feel sorry for my life; Not even remotely.  I lived well, and still do.

No, this issue is about something which has been put on hold so many times that the absolute drift is beginning to exceed the thresh hold of failure, or more specifically the darkness of catatonic depression; A realization there is no way forwards .. unless.. until.. gender is aligned in a single place matching the incongruence and creating a whole being.  There it is... I must change or I will die, literally or figuratively, lost in acute depression or .. or.. (no good pictures there).

Shouldn't be a surprise to anyone, XXY people take life in bits and pieces, we learn more than anyone ever dreamed was possible, and we can apply those skills practically.  Sure eventually I would get here to this minor issue, this gender problem, and it would stop the clock.  A barrier.  Something that would cause panic, frantic thoughts, concern, elevated heartbeats, and ... trepidation, even fear.

Let me put this simply:
Onnineko identifies female, happens to be XXY, has secondary hypogonadism and a thoroughly dysfunctional endocrine system which is missing progesterone and everything beyond, doctors have been expecting my imminent death for over 20 years.... An Onnineko is of mixed genitals, some might call me a hermaphrodite, if you understand none of me works in a positive sexual way.  I want to be just.. female. 


Sounds simple, no?  The point is not just to align in a female gender but be able to move forwards as a woman without restrictions enforced by genital appearance or function.  The plan is to move forwards, which means resolving this crisis before catatonic depression and that other thing (the manic no "fear or sense" side) catches up.  I  cannot do hopelessness, not again, the euphemism for "gun to the head" comes to mind.

Most people trying to transition from MtF or FtM are worried about what their coworkers and social groups think of them.  Frankly I have no idea what my coworkers or social groups think of me, most know that I am intersex, or a butch female, or a feminine gay male, or some weird alien.  I get by at the moment on the fringe of space allocated to males, butch or feminine gay, and I am going to just butch I think.  Which will cause some havoc, maybe... its been at least 10 years since I last used a women's room and that might be an issue switching now.  If I were to complete the process and just be female, it is certain that several of the males would try rape if I used the men's locker room and couldn't demonstrate at least something that appears like a penis (functional or not).  This is a new place, I've only worked there a year and its getting around that I'm intersex.. male interest is perking up as it is.. (sigh..) .  This is the downside of being a contractor, one might be among the top 1% of the experts in the world, but as contract staff you serve at the pleasure of the organization holding the contract, or in this case a military.  This particular military is not known for its kindness, understanding, or willingness to support anything outside the dichotomy.  Sometimes I think especially DSD's or Intersex people.


Lots of negative in this.. I've put it off too long.  Resolving my own gender, and doing it in my own terms by my choice. So here I am, shifting from undefined to female.  What a ride this is going to be... and perhaps moving forwards.

Thursday, October 31, 2013

Engineering the Perfect Human

Hands down, the human body is a marvel of complexity.  From my point of view it is a beautiful complex machine.. and yes robotics is a hobby of mine, it is not a long stretch from engineering robotics and designing artificial intelligence to the function of a bio-system or the human body.  Engineers use some of the same relays to do the same work.  We have feedback systems just like the human body has feedback systems.  When there is voltage on the wire that means its a "1" or an "on" .. when there is feedback in the bio-circuit it is a "1" too.  Engineering the human body is .. necessary to understand.

That isn't to say that an engineering degree will get through molecular chemistry, but the addendum knowledge can be learned and applied.  This is after all why we go to to college, to learn to learn, to think and apply, to build understanding and expand knowledge.

I started in engineering of electrical systems and computer science, and since then have never stopped learning.  There have been some detours through medicine, law, and a multitude of other topics.  Life is a process of experience.

Right now, the topic is how sufficient levels of estradiol impacts the rise and fall of Insulin (yet another major hormone), and no, I do not have diabetes nor ever plan to have it.  More specifically I am planning to never acquire any of the major immune deficiencies that us XXY people are supposedly (lies, all lies!) predisposed to.  Okay, maybe the researchers have a point, in the absence of balanced hormones including estradiol people whom are XXY do and are much more susceptible to all manner of immune deficiencies.

Thats right... the medicalized person that is XXY, whom for the convience of the medical establishment are forced into the male role. Most XXY people have, less usually less, a penis, I was less lucky.  ..WE.. are pushed into the male role because to admit that we are intersex would destroy the lie of the binary gender system.  And when we are forced to grow up as male only, the system only cares if we have enough testosterone.  It should be no surprise that in the absence of medical care, we WILL develop immune deficiencies and diseases from the LACK OF ESTRADIOL.

Cause of Osteoporosis: LACK OF ESTRADIOL...
cause of all Immune Deficienies (like lupus).. LACK OF ESTRADIOL
Arthritis: LACK of estradiol.. 

Huh.. that was easy.  Well its not, not really.  There are endocrine disruptor in our environments which also cause a lack of estradiol in natal females, which is why so many are experiencing Breast Cancer, Cancers in general, and numerous other problems like Multiple Sclerosis (MS).  When you compromise the body system by inhibiting its use of estradiol the body eventually breaks down.

Simple.  Those of us whom are XXY are only more suspectable to all of these issues because we are BY DESIGN of the medical world deliberately made estradiol deficient.  That is if we continue to accept the dogma that all XXY people are male and only need testosterone.

Our highly religious binary gendered system is the cause behind the incredible stupidity shown by the medical establishment.  Oh my god, we can't possible prescribe estradiol for a male...

Yes, most all of the major problems our society fears right now related to diseases of the human body are caused by our society and its idiocy over gender.  There is also some considerable responsiblity to be laid to the feet of our EPA for the absolute idiocy which led to the shutdown of all coal plants in favor of burned oil, but thats another rant.  EPA=Idiots.

Bottom Line:
All human beings need a balanced Estradiol system or they will develop diseases.

Tuesday, October 22, 2013

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.
*******
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.

Sunday, September 29, 2013

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.

Monday, July 29, 2013

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...

Friday, July 26, 2013

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.