Thursday, September 20, 2012

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.

    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...

Monday, August 20, 2012

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.


Thursday, July 12, 2012

Testosterone Causes Permanent Damage vs Estradiol

Doctors claim to adhere to the standard of do no harm, and by all observation of their adherence to administering testosterone in all patients with 47,XXY by default they have collectively lied to us.  Testosterone causes irreversible changes in human physiology regardless of the age of the person it is administered to.  One only need look at the results of a female to male transsexual transition to see the clear changes caused by Testosterone.

If a child takes estradiol at about age 12-16, and at any point switches to testosterone they will masculinize normally. The reverse is not true for testosterone. Taking testosterone as the first choice will make irreparable changes in the child's (or adult untreated XXY) physiology.

A person put on testosterone, whom doesn't want the masculine changes would consider the result to be permanent damage. Because it is, permanent damage.

Estradiol does not permanently damage the individual.

This should be pretty simple to understand. The doctors swear to do no harm, but testosterone is their first choice and it does harm by default. Some people are okay with the changes and all the rest of which the number is growing now that support communities are recognizing such people exist, those people are NOT OKAY with the permanent damage caused by testosterone.

Monday, June 11, 2012

47,XXY females documented by pubmed

It is astonishing to me that despite documented cases of women with 47,XXY the various institutions including groups in the USA continue to insist that 47,XXY must only be Klinefelter's Syndrome.  Dr. Klinefelter studied a gendered issue regarding males whom did not feel themselves to be sufficiently masculine.  It was found in the hodge podge of science which uses XXY people as test subjects mostly that there are people whom are assumed to be male whom have womens breasts, a more feminine features or the lack of masculine markers.

It was only recently that OII Australia asked a research group that had never before considered that XXY people could be female if they were only interested in XXY males.  The research group responded with this statement suggesting that XXY and Klinefelter's Syndrome be separated in the light that there are non-male XXY people.   Download 

With the advent of new DNA sequencing systems and the costs falling rapidly I expect we will find far more XXY females in this world than expected.  The lack of knowledge in this regard stems from the lack of genetic testing done on women, and a very narrow view promoted by medical science as an establishment.

Returning to the links posted at the top, as much so I don't lose them as anything else.  It is important to note that current thinking in the origin of the X's from parents has a great deal to do with the gendered identity of the XXY person.  Not to mention the degree of effect of the chromosomes upon the physical appearance of the individual.  This is a rather fascinating topic, right at the cutting edge of medical science.

Saturday, June 9, 2012

OII responds to the DSM-V-TR and Diversion into managing hormone levels

The fundamental problem for XXY people attaining medical treatment, especially with the new draft of the DSM-V-TR that was released by the American Psychological Association has been addressed by a document prepared by OII Australia et al see here OII Australia Comment on the DSM5 and SOC7 .

And I support OII in this endeavor, to change the language of the DSM V such that intersex people like all XXY persons have access without the transsexualism mandate and gatekeeper system that exists for people whom are on a different path in their life.  Transsexualism is a journey with an ending for certain people, Intersexualism however is a lifetime challenge for each and every person so affected.

My life is an example of the hell intersex people must deal with when working with medical professionals who cannot think outside the binary, hello, I am not male and not female and ... and I just want to be a normal person like everyone else.  I am not a transsexual, I personally identify as not male, which causes as I have written else where numerous issues with social interaction and expectations.  As an XXY non-male person I use estradiol... and thats all.  It s notable in the world of XXY people that I am fortunate enough to have stood up to medical professionals and insisted on using estradiol.  Found that was all I needed, and haven't looked back since. 

The post below is a comment on a closed forum, in response to a couple of questions about testosterone and estradiol supplementation for individuals XXY.  Although certain closed minded people at the American Psychological Association, whom happen to be involved in the re-writing and pathologizing of intersex people in the DSM-V-TR, there is hope that researchers have begun to recognize that not all XXY people are male.  That XXY and other intersex people are not transsexuals.  And that XXY and all intersex people need normal access to medical treatment which does not assume a sexual binary of male/female; But allows access to male and female, and recognizes the terms Both and Neither also.


Yes, precisely. Taking aromatase blockers is the same thing as an estrogen blocker for men, we however we want to be male are not 46,XY. Once a person recognizes what they are not, and begins working towards what they want to be all of this makes more sense. If he needs testosterone to achieve his goal then he needs testosterone. Pushing his testosterone level up even slightly will overcome any amount of estrogens.

Second thought for you, don't bother with non-hormone based supplements, use medically prescribed hormone treatments or nothing. Supplements are meant for normal healthy people who want a little pick me up feeling or placebo; Placebo is a substitute that mimics the act of receiving support and gives the same feel good feeling of achievement, power of the mind and all of that which helps us not at all.

Let me give you a simple example of taking a hormone from the perspective of biology. An average person whom identifies as male, approximately 6 quarts of blood, which when you are measured for testosterone or more specifically %Free Testosterone provides a measurement how much excess testosterone your system is not using right now. Think of the %Free Testosterone as a way of measuring if you need more or less, when is high you could have less, when its low you probably need more. To clarify this we test Luteinizing Hormone (LH) which is the precursor for the testosterone production system of the body and brain. LH goes up when the brain wants more testosterone and down otherwise.
%Free Testosterone low, LH high = Need more testosterone.
%Free Testosterone low, LH low = probably okay.. how does the patient feel?
%Free Testosterone high, LH low = no need for testosterone.
%Free Testosterone high, LH high = Problem! See a Doctor.
Simple right? Well yes and no. First of all, there are a number of issues surrounding testosterone which cause further issues for the patient. One of those is that the patient's natural production of testosterone will be destroyed by taking testosterone, Doctors will not tell you this. Another is that to manage the side effects of testosterone at higher levels than your body is prepared for, you may need additional drugs to counter those side effects.

Anyway don't let me turn you away from testosterone, heck, male and wants to be male, you need testosterone to do it. Just take that conversation back to the main boards where we are not discussing estrogens. Thanks, Onni.

______ Warning: Estrogen discussion continues!

For those who are curious here is how estrogens work for people who identify as not male or female. Women and men (shock!) have about the same amount of blood or roughly 6 quarts. This is important because when you do blood tests for aggregate levels of various hormones it is a percentage of body mass as an expression of the blood quantity, ie. in estimating how much of a drug you need the mass matters. Those using estrogen care about more than just testosterone and should be looking at estradiol, estrone, LH, and testosterone at the minimum. The estrone-estradiol axis is of particular importance in certain cases which I'm not going to go into here.

Estradiol what is high or low? Thats where we have to start because the natal female varies by 300 or more pg/ml on a scale of 30-400 pg/ml a month. Older women who are not on a cycle tend to hover about 35 pg/ml on that same scale. Those lovely words.. in my experience .. a XXY person should be using the baseline estradiol level of about (and it varies by person!) 120 pg/ml (0-400 pg/ml scale), testosterone level less than 50 ng/dl (0-1000 ng/dl scale), Luteinizing hormone level under 6 (0-70 scale).

At or below these levels the target is that the individual will meet the minimum requirements of estradiol to lower their LH levels into the normal range and therefore reduce the release of cortisol and other stress causers. The individual will not experience feminizing effects, excepting only that they will not experience age appropriate masculinizing effects of testosterone either. This type of treatment will balance the body and brain's inherent need for balanced hormones. Some variance in levels is expected for each individual, unlike 46,XX females and 46,XY males there is as yet very little actual medical knowledge about 47,XXY people.

Estradiol target is 120 pg/ml or 120/400 30% of the scale.

How you wonder do we intepret estradiol levels... well its more complex than testosterone. The most basic case is estradiol (under 30%) and LH is high, needs more estradiol. All of the other cases, because of how we measure by percentage of blood (ie free and roaming vs used) are actually meant to measure other things related to significant major problems. Because of that they read more like this:
Estradiol high (over 30%), LH low = testosterone low and FSH high = Contact medical center for full blood work up and metabolic panels.
This is not because there is something wrong but rather because the estradiol system is way more complex than testosterone, and all of the tests surrounding it are designed for significant issues. Think of estradiol as the hormone that drives (in conjunction with many others) the body and brain and every single cell included. Testosterone works by supplementing estradiol at certain specific tasks, as do a number of other hormones. So you do really need someone who knows how the whole system works to manage estradiol, typically the endocrinologist. However, what I have just written here is out on the bleeding edge of medical knowledge, and most endocrinologists are decades behind. Good luck with that.

Friday, February 3, 2012

Transsexualism might well be Genetic

Now isn't that just fascinating. Not only because the funding is available to look into why Transsexuals are the way they are, but also they number 1/10th of the comparable intersex population, or less; Far less. And yet they get all the funding, the studies, the time spent determining why they exist. Frustrating, it is.

How about we determine the genetic basis of the known intersex conditions like XXY?

Personally I believe that when they get around to studying the genetic level of XXY, it will devolve the entire conversation about XXY people being male and the researchers know that. Which would cause some issues, if not out right problems with the recommended treatments for this entire class of people. Not to mention the civilsuits for using the class of people as live test subjects for male and female subject drug treatments.

But what can we hope for?