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
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
%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.
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