Tuesday, April 5, 2022

...and then some time passed

 Hard to believe that its been 7 years since my last posting.  I've been busy.

Since I last posted, several positive events have happened with a multitude of others stepping up across the world and in the USA, their actions have created a pretty decent beginning of a conversation about Intersex.

Recently I had a chance to stop, I mean really stop, everything... to a complete halt; And for long enough that I could finally for the first time in my more than 50 years on this planet, I could begin to unpack some of the many gender and relationship events of my life, even as far back as early youth.  This necessary time of reflection has allowed, given my nearly complete understanding of everything that was done to me, everything I myself did, and all of the consequences; My first love... rejection, and loss of the person I'd thought a friend.  And many more events.

Understand, when you are in pain...living in a place so dark that suicide is a daily consideration; There isn't time to break down every side of an event, the mind becomes numb to everything it can.  And later when I have managed to pass those dark days, I practiced a different kind of purposeful avoidance of the bright hot shards of pure anguish that lay across my mental landscape.  My avoidance was practiced through work... which made me fairly "successful" in the world, I was always seeking more of that work stuff.  You might even go so far as to say, I was good at dodging the pain; I was exceptional in the realm of work.

Alas... lately I have had some time, and one by one those shards have been evaluated and analyzed.  I didn't even realize at the time why it hurt so much when the guy I thought was my friend, my so very close friend...married someone else, he broke my heart.  Why would anyone want a broken intersex person?



That.  Was. 25 years ago.  Painful as the moment I learned of it.  That my friend was leaving the country to join the girl he wanted to marry.  Ouch.  Still Hurts.

Anyway, I did work through it, finally cried it out... Not sure how often I'll update this site.  However, I wanted to say the works of the various Intersex organizations appear to be having a positive effects, and I have reached a better place (tears and all).  Oh and I'm still alive out here.

Best of Luck

Tuesday, January 20, 2015

XXY: Reflections of Gender in Children

A while back, I read a very sad story not related to Leelah Alcorn although that is another sad story.  This one is about an XXY child who was gender denied... (paraphrased)

I read a story from a parent recently which was so very sad. Their child was raised as a boy, the parents insisted they had checked and knew their child was a boy. Didn't need some gender doctor to tell them that, just a waste of money. Instead they did everything they could to make that child a boy.. and when he didn't fit in they punished him. When that didn't work they medicated him.. when that didn't work they encouraged people outside the home to change the childs manifest destiny to make HIM a MALE like all the other boys.
Just one problem... at the age of 16 he killed himself. 

The note left for his parents was short, to the point..(paraphrased lots more hatred in the note) "I'm female, I hate you, I hate life, I hate your friends, and I hate every damn this this world stands for."

That person is dead. Good thing to know the parent knew better than a doctor what gender to raise their child as.  The parents can take heart, by knowing better than gender specialist 1-2 hour visit about the age of 5, they saved the cost of graduating high school and college at 16. 


Now whats really sad is that I can relate to this story.  It touches heart strings and pulls painfully.  I remember what it was like to be caught wearing my sisters clothes, the price paid in blood and tears, the punishment to be beaten.  Nothing straightens out a young Boy more than being beaten, right?  About the age of 10, my parents decided that if I couldn't wear the clothing they decided I should then I didn't need any clothing at all.  Their latest form of torture to convince a child she's a boy, consisted of coming home for three weeks from school and wearing a diaper while the parents invited my friends (soon had none) and their friends over to watch.  As you can imagine this broke my spirit to resist, if the beatings didn't do it... the shame sure did.  Time went by.. I learned to be an angel in what ever mode the parents wanted, otherwise I would be beaten.. again, and again.  Didn't help any that learning without instructions on what the expected actions and results should be meant more beatings.  Probably the single greatest lesson in all of that I learned was to be cognizant of my surroundings, aware of the beasts and dragons in my life, and how to handle them with kid gloves at long reach.  I knew for example that when my step dad arrived at home I had to be close to the opposite door he would enter, as I would know within 2 seconds if fleeing was necessary... or if I would have to go be "present" for him to see and acknowledge as still living.  Two seconds, you see was the time to reach the door before he did.  One learns to not be present, on bad days.

To this day I hold a great deal of pain, at the age of 15 my parents divorced, mother and children off into the world without him; It was like a reprieve from hell.  Of course, my mother being a sensible woman who willfully ignored any outside opinion and only believed doctors should be seen when you were dying... unless she was sick.  Oh yes, mother, how could I ever forget?  When I was 16 and started developing breast tissue she ignored it.  When I ran into any number of problems in school, she ignored it, after all thats what Boys do, fight. 

What my mother could have done was help me with estradiol at the age of 16 to assist development of a normal female.

Instead at the age of 16, she kicked me out of the house.. said I had to learn to survive on my own.  As an XXY person I was a prodigy with mathematics, economics, social sciences, and a few other things none of which equaled the ability to survive mid-winter in Alaska with one set of clothing in below zero temperatures.  I'll never forget that week.. to say it went badly is an understatement of many degrees.  And it took time to come back from that place.  The next year had me going to school, working, paying rent, surviving... eating occasionally because there wasn't enough money for food.  Details right?  There certainly wasn't much in the way of hope.  

Everything that I am came from this experience of surviving despite the odds.  And looking back, its a wonder I lived through ages 5-15.

So you wonder.. what should have happened?  Who is really to blame here:
The willfully ignorant parents or the many doctors which no doubt caused the parents much financial pain?

My parents should have been advised by a doctor, a Family Practice Doctor... make no mistake they need to be able to guide parents to correct choices; I should have been tested about the age of 5 for Gender Identity as a child with an Intersex or DSD, raised in the correct gender, and followed by that doctor.  Hello world, I'm Female, why in the world would you expect me to understand "boy"?  At or about the age of 12 I should have been treated for the correct gender identified hormone to balance growth which in my case would have been estradiol.  The results of a treatment like that would be me, about 6 inches shorter since the leg/arm bones would have properly capped from the rising hormone levels.  I wouldn't have had to endure multiple stages of puberty as it would sputter to a start and then stop over and over as hormones rose and fell so minutely.  I would have been normal.

I could have been normal.... if anyone had cared.

My mother has memory issues, from her own willful ignorance and remembers none of this.  And I have not yet found it in myself to forgive her.  She's old now, and I try to make sure she's okay.  We don't talk about these years, her version is rosy and nice paints us kids, my sister and I, as angels with all the benefits of a perfect loving home.  Yeh... 


I feel a profound sense of loss, when 40 years have gone by and the medical system still, to this day, refuses to take responsibility for not educating the patient or the patient's parents of the catastrophic damage refusal to consider gender causes in the child.  Our society is so highly stratified into genders that one must have a gender.  This is a basic need, and being forced into the wrong one is a horrible experience.

XXY children need to have a Gender Identity specialist assist in determining their gender about the age of 5, and should receive gender appropriate hormone treatment about the age of 12, when luteneizing hormone begins to rise into "High" or "Very High" levels. 

This is simple.

I could have been normal...

Thursday, December 11, 2014

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."

Sunday, October 26, 2014

Statements Which Matter to XXY people

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.

Monday, October 6, 2014

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.

Monday, September 1, 2014

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).

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.

  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.