XXY: Medical Treatment by Ignoring the Problem

First and foremost XXY is a genetic identifier which will have a variable effect on issues relating to immunological disorders depending on if you have enough hormone in your system to support the immune system or not.  All of the "diseases" like Arthritis, Osteoporosis, and for that matter Cancer are related in that they are natural body reactions to a lack of support.  You can see minor cases of what is essentially starvation/dehydration if you cease drinking water or observe someone else who has... their body stops functioning well and breaks down; This is a simple case.  When a person has a lack of hormone, the body starves too, and when the body has too much hormone the excess is exchanged into other products which cause changes which are just as bad as too little.

In XXY people we have an altered DNA state which causes differences in how we develop, and so far the medical community has agreed that it is most simple to lump all XXY people into one group and ignore the problem.  This doesn't work well for most XXY people, only a very few can tolerate the default treatment, testosterone in any amount the person wants.

Treatment for XXY people should...
1. Establish gender identity of the patient.
2. Treat for gender appropriate hormone requirements based on actual baseline and indicator testing.

Past treatment ignores the gender identity of the patient, which in large groups of XXY people counted from among the entire population, not just males, has several identified groups namely: male, female, neither, and both.  Sometimes called: Male, Female, and Intersex.  Intersex however is a proscribed term in medical science in some parts of the world.  Lumping all XXY people into the male category has caused long ongoing medical problems for most of the XXY population for the past 60 years.

I have studied and followed XXY people for over 10 years, and met/talked with thousands of XXY people.  Individuals who are self-identified in genders Female, Intersex, Male, and Neither.  And I have done a personal study with volunteers for my own edification (See Banding Study) with no intent of actually publishing results.  From this I have attained certain understandings about the XXY population.

1. The vast majority of XXY people are not male.

• About 15% of the known population are male, should be male, and tolerate testosterone well.  These XXY people can take testosterone without significant side effects, and do not require additional cocktail of drugs to counteract the bad effects of testosterone.
• About 60% of the known population are Intersex, meaning they identify with both male and female.  This group has a much smaller (part of banding study group 4) group that can tolerate testosterone with few side effects, or at least no need for additional drugs to counter the testosterone caused side effects.  Some of the (banding study group 4) group choose to try testosterone and most do not.  The remainder of the group (part banding study groups 3 and 4) should not take testosterone because it will require a cocktail of drugs that do more harm than good. 
• The last 25% are female (banding study groups 1 female, and 2 intersex female) and absolutely should not ever be prescribed testosterone.  This group is female, should take estradiol as needed.  

2. Testosterone as the default treatment for XXY people is causing more harm than good.

• Among the 20% (banding study groups 5 and part of 4) testosterone should be used because the individual can tolerate the hormone without major side effects.  This group self-identifies as male.
• The rest of the XXY (the Known XXY population) is not and has never been male.  The default treatment (assumed male and testosterone) for these people is causing detriment and harm.  
• About 10% of the XXY known population is female with a uterus and vagina, these women should not be lumped into the male only treatment ever, and yet they often are.  Doctors insist they are XXY and attempt to treat them as transsexual females or worse transsexual males.  This is abhorrent at best and criminal.  The definition of female is the presence of a uterus, and yet doctors would have you believe these people should be surgically altered near birth to remove the uterus and raised as boys.  Criminal!

3. Using XXY population as justification for treatment of non-XXY people directly harms the XXY population.  This includes:

• Transsexual XX or XY people.
• Other genetic groups such as XXYY boys.

4. The group that is XXY includes:

• Any number of X's and one Y.
• Mosaic's of "Any number of X's and one Y."

Statements Which Matter to XXY people

List:
1. XXY people want good healthcare; Thats all.
2. XXY is all genders and all sexualities; What matters is that you are happy.
3. Anyone can be XXY, it is a means of identifying a unique set of parameters for living well needed by the medical profession.
4. XXY includes males, females, and intersex people.
5. XXY is a natural event and not something to be surgically adjusted to fit some arbitrary sense of beauty or to fit into the religious dichotomy of male and female.
6. XXY people will experience male and female aspects of life and how much is related to each individual.  But all XXY people will experience feelings.
7. The bottom line is that we need good health care to live good lives.

Serenity is Priceless

Lets talk for a minute about another side of my life, one that seriously complicates everything endocrine and provides me that generous excuse of why in the world anyone would want to learn as much as possible of a subject so incredibly poorly documented that it takes years to be conversant and decades to be skilled; Endocrinology is a bitch to learn and even now a decade into this path I'm still a student, an educated student.  Todays topic is Congenital Adrenal Hyperplasia or CAH, with hints of intersex, and all those things I usually don't mix up with the XXy crowd. 

You know, I'd love to be part of a group.. (really.. sort of, err.. no so much) but the idea of being part of a group has appeal.  And I have something in kind with all people 47,XXY in that I have 47 chromosomes too... except that I'm female.  Ish.. female ish.. which means more intersex really.  Or maybe I'm a feminine XXY guy lacking male parts, or damn, I hate this topic.  People ask me what gender I am, and frankly (Frank.. really?), really, I don't like hard questions.  I go with what others pick since they are less likely to take offense to me choosing something they didn't expect, saves so much indignation.  So yes, I am 47,XXY, and I have CAH of an appropriately rare version as to make me about 1 in billion or so; Doesn't feel special on this side, more like isolation, or a rock in the storm surging sea... surrounded by emptiness.

.
.
.

emptiness. ouch.

..   anyway...

So I have CAH, salt wasting version, or more specifically I don't make Aldosterone (mineralocorticoid) naturally.  The body (my... ) experiences a feedback loop for enough salt, which will always come up short since the mechanism to retain salt is broken, so the negative feedback on the circuit causes the kidneys to release high amounts of renin which in turn stimulates Aldosterone (except that very little of that happens, so little that its not detectable).  Instead of the body/kidney's retaining some salt and passing the water through both are retained causing water retention or bloating or edema depending on who you talk to.  Chronic edema is.. bad, lets leave it at that right up there with heart attack.  I have two choices, take and continue taking salt at a minimum of every two hours for the rest of my life and try to balance the blood pressure issues, along with progesterone which in turn will allow the endocrine system to make a minimum of necessary mineralocorticoids directly through their primary path; Or, I can try taking some of those designer drugs and still try to balance salt.

Two issues with the assumption of endocrinology have occurred to me, both relating to completely dysfunctional endocrine system like me.. specifically that:
1. The ideal that there is only one path between the endpoint cortisol and mineralocorticoid hormones is lunacy.  The body has at least two and probably three ways to make those absolutely necessary hormones, although the cost of creating the alternative pathway's make the alternatives far less than the preferred method; and that,
2. The alternative path's are so expensive that even having them is not enough to do more than to produce small amounts while exhausting the patient; and that..

((
I wrote about cancer last time.. wasn't kidding about the body being able to make hormones via a less than preferred pathway as needed in at least small quantities.  Usually the medical experimentation occurs on someone like me, but I see the medical community experimenting wholesale on most of the active population of the planet.  Odd, no?  The human body is absolutely amazing, in what it can survive, although we measure time in years and the body in minutes; Here we find the disparity of desire versus longevity.  Until medical science acknowledges what we already know, the study of Endocrinology is still an art, less practical.
))

When have I ever done something the easy way?  No thats not fair, I do it the healthy way, and because I don't like the effects or long term loading of the drugs choose to use bioidentical progesterone and estradiol only.  Which leaves me with balancing salt intake versus high blood pressure and progesterone.  I know from experience that it works, that it is possible, and that one can succeed in life despite these kinds of challenges.  And I know what its like to miss a dose of any of those and the hormone cascade crash that goes with it.

To set the record straight:
It is MY rock..
in MY empty Sea..
a single patch of Serenity
in the Storm of life.

What does Cancer have to do with Autoimmune Endocrine Diseases

I'm going out on a limb, into a very controversial topic which has numerous people affected, effected, and left countless people the world over in a great deal of emotional pain.  It cannot be understated how divisive the topic of Cancer.

It is unfortunate that there is so very much money to be made on the sick and dying patients, the world over.


Lets start with what cancer is:
1. ... a natural process of the human body.
2. ... uses hormones in the endocrine system to make other hormones. 
3. ... has many different variants for each localized region of the body.
4. ... is commonly described as a growth of cells in a region which can lead to a tumor.
5. ... the less benign forms kill the patient.
6. ... the common treatment, chemotherapy often kills the patient.

Cancer is an endocrine disease that directly effects and is also protected by the body's immune system.  The most common treatment is chemotherapy which destroys the body's immune system, and then finally the cancer.

All good right, we're on the same page.

When a patient enters "remission" the cancer growth stopped, the tumors stop growing or shrink, and the patient stops dying.  To get here the patient follows a guide provided by doctors which takes all of the stress out of their lives, reduces their food intake to only the most healthy foods, and specifically removes all known impacts to the human immune system.  Further, the process of following the guide helps the patient to live a far less stressful life.  All of this lowers the total load on the patients body Immune System.  Which in turn also lowers the requirements for stress load hormones: cortisol, dopamine, serotonin, etc..

I know what you are going to say.. But Onni... Serotonin and cortisol are totally different!  Well yes, and no.  Look at it this way, there are 30 major hormones and about 90 minor ones (misnamed since minor only means localized to one organ, serotonin = brain), and of those there are about 25 which deal with stress.  Lower your need for stress hormones, and if your "cancer" is related to stress then you don't need as much of that "missing" hormone and if your need falls under your threshhold of what you can make without the tumor; The tumor shrinks and cancer goes into remission.

Simple.. ? ehh... no.. Nothing about the endocrine system is even remotely simple.

Take for example, the hormone Adrenaline, it is probably the most simple case, which if you stop making it your heart stops.  Simple right, no adrenaline and you die.  A cancer of the adrenaline makes ... adrenaline and your heart doesn't stop.  The problem is the treatment, we do not have a means of feeding minute and exacting portions of adrenaline to the heart every minute or so for the human heart to keep beating.  The patient is going to die whether they are treated or not, difference in slowing the tumor is about 3-6 months of life; If you can call living in pain in a hospital, life.

Most cancers that people have today are related to regulation of estrogen and testosterone, ie breast cancer and prostate cancer.  No surprise really, our environment is full of endocrine disruptors, and even our food supply is highly compromised.  If you consider that compromised food and the oil you like to bath in are actually Poison... then it makes sense that if you bath in and eat poison for 30-40 years you'll be affected by it.  This doesn't account for kids battling cancer at the age of 2+, unless you dig deeper, which I'm not going to do in this posting.

As someone who has been researching autoimmune diseases for the past... damn I'm getting old.. the gap from osteoporosis to bone cancer isn't large.  Osteoporosis is a loss of sufficient nutrients and or an absence of estradiol for the system of bone replacement to function.  Cancer of the bone is a loss of ..(how to sum this one in one short sentence..?) it is a loss of a significant hormone in the process of blood creation, the cancer makes up the difference needed to keep making red blood cells, which without you die.

I have a long history of not quoting the doctors, studies, etc.. which I pull or support information from, and I'm not going to start now.  It was notable however, recently that a study was published where the medical community finally admitted that beating Cancer to death (along with the patient) was not productive and that Cancer cannot be cured, because it is a natural process.

Chemotherapy is a drug/radiation treatment which bilks the patient out of a massive amount of wealth, without really providing anything in the way of real medical treatment.  There is so... much... money .. to be made from sickness and death.

Cancer is an Endocrine Disease, related to other Autoimmune Disorders, which can be acquired through prolonged poisoning.  Its quite simple (or ridiculously complex).

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).  A banding study should be done, but I no longer have the desire to follow through.

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.

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.