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.

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.

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.

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.

47,XXY females documented by pubmed

http://www.ncbi.nlm.nih.gov/pubmed/15755052
http://www.ncbi.nlm.nih.gov/pubmed/1483688
http://www.ncbi.nlm.nih.gov/pubmed/19732585
http://www.ncbi.nlm.nih.gov/pubmed/21540567
http://www.ncbi.nlm.nih.gov/pubmed/20464469
http://www.ncbi.nlm.nih.gov/pubmed/11173857

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.

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.
So..
%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.

So..
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.
etc...
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.

Transsexualism might well be Genetic

http://www.ncbi.nlm.nih.gov/pubmed/18962445

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?

Onnineko

XXY: Quality of Life is lower on Androgens... no kidding really?

Quality of life is reduced in patients with Klinefelter syndrome on androgen replacement therapy.

de Ronde W, de Haan A, Drent ML.

Department of Endocrinology, Vrije Universiteit Medical Center, Amsterdam, The Netherlands. p.deronde@vumc.nl
Abstract

CONTEXT: Klinefelter syndrome (KS) is a genetic disorder, characterized by an XXY karyotype, hypergonadotrophic hypogonadism and infertility, which affects approximately 1 in 700 men. KS has also been associated with neuropsychological alterations. OBJECTIVE: To investigate whether quality of life (QoL) is reduced in patients with KS on androgen treatment. DESIGN: Observational study. METHODS: Questionnaires (RAND-36) were sent to 46 KS patients on androgen treatment who regularly visit the outpatient clinic of an academic medical centre. QoL scores were compared with a Dutch male reference group. RESULTS: Forty (87%) questionnaires were returned which were suitable for evaluation. KS patients had significantly lower (worse) scores on eight of the nine domains of the RAND questionnaire compared with the male reference group. In KS patients, higher education was associated with significantly better QoL scores. CONCLUSIONS: QoL is reduced in patients with KS on androgen treatment.

PMID: 19131504 [PubMed - indexed for MEDLINE]Free Article


--------------------------------------

I read that article and said, "Yep that about sums it up." You can find the article on www.pubmed.gov. Amazing that they have finally published what we have known for years, well those of us willing to recognize the problems caused by Testosterone. Its not a panacea, no, Testosterone for people with Klinefelter's Syndrome is one foot in the grave, with the rest of you following in about 10-15 years (or less if you take alot of it).

So Dredger, what does this say about the ethics of giving Testosterone to a patient, is it better that they live first unhappy and then die more quickly? If you didn't know, Dredger is an Ethics specialist and a Eugenicist. We have to watch those doctors who profess to Eugenics very closely, because if you or I do not fit into their perfect world it is perfectly acceptable for them to kill us and still fit into their narrow field as "being Ethical". That is, Death is Ethical if the person who dies isn't considered human. Most of the time we would call such people fanatics, to wit, imagine they happen to be our medical professionals?

Are we safe? Hardly.

Onnineko

XXY: Personal Experience Using Estradiol HRT

It has been several years since I started self treatment with Estradiol hormone replacement. At the beginning I started with very little, and over the years as my body adjusted to the changes I have slowly raised the amount I take from .025mg topical daily to now .2 mg topical daily. This works out to for an average sized ordinary person of about 40 pg/ml (scale of 0-400 pg/ml for an ordinary woman) per .1 mg topical application. My pretested before starting estradiol was about 100 pg/ml on the same scale. So now, I'm replacing about 80 pg/ml, and have a much lower level of testosterone about 1% of scale. What this all means is that I have replaced my body's natural production of estradiol and lowered the amount of (generally toxic) testosterone produced. My testosterone level started at 4% of scale (about 0-1200 ng/dl), it is now about 1%.

When I started this process, I was told a great many stories about what would happen to me. For example:
a. You will become a girl.
b. You will develop breasts (no kidding, really?.. I already had breasts).
c. You will lose your capability of acting rationally (a doctor actually said that.... he was male).
d. You will no longer have to deal with rampant acne. (TRUE!)
e. You might retain more bone, and thus no longer be on the watch list for osteoporosis...

Actually they didn't say E, I chose to take Estradiol for two reasons, D because I wanted the acne to end, and E, because being 35 and being concerned about osteoporosis seemed stupid if taking Estradiol would fix it. Well it did... I'm no longer in the danger range for osteoporosis or osteopenia. Indeed, I made such an Amazing Remarkable recovery you'd think the medical community would call it a miracle. Actually the results were swept under the rug. Oh well, not my problem, my rescue. :)

So here we are years later...
a. I am not a girl, I am Intersex though, I was born this way, I have not significantly changed because of Estradiol.
b. My breasts are still my breasts... no significant changes there. :)
c. Rational thought.. hmm.. what was he trying to say, I wonder?
d. Acne, is gone, as suspected although resisted by EVERY single doctor the cause was excessive levels of testosterone. Which I might add my body cannot use in more than tiny quantities, like every other male can and does. Its not odd, I have a more female orientated physical system. It is only unusual that a male doctor cannot imagine someone allegedly "male" not being all Male.
e. Within 6 months of starting Estradiol and progesterone (I've since stopped the progesterone, tests ongoing), my bone density increased more than 3 medians. This should suggest that I was lacking something either estradiol or progesterone provided. You would think so...

Hi .. :) I'm Onnineko, the "guy" who works for fortune 500 type companies, who fits in more or less. For one thing, I look like a 24 year old kid though I happen to be almost 40, just like any other female I don't look my age. Learning to sing did wonders for my confidence of speaking too, which helped a great deal with my work.

The only downside that I have noticed is that when the patches, I use Vivelle Dot .1 mg patches, start to wear off the effects are immediately noticeable: my memory starts to fade, as the level of estradiol drops lower I feel strong sense of paranoia, the sense of something being wrong becomes acute, the sexual disconnection felt with gender identity dysphoria becomes more clear. In all feeling ones personal connections to stability, intellectualism, and general feeling of well-being slip away is truly terrifying, that is when it can be remembered. It is entirely possible to notice the change and forget, and then feel the paranoia lightly and then forget, and then it gets steadily worse until eventually memory kicks in and prompts changing those forgotten patches. Darn is it hard to live life on a 3 day leash. But its worth it.

Every minute lived without the devastating effects of too much testosterone, with enough estradiol, makes the world stable, removes the pain, engages memory, and enables me to live a normal fair life. To be able to engage in feelings like happiness and even sadness at all, like an ordinary person does is a wonder to me, even now years later.

I think back what it was like living a life that had no meaning, was wrong in every physical sense, and one which was only a step ahead of suicide every minute that I lived. Nothing at all could convince me I should stop taking estradiol at this point, going back to that is death. As the level of hormone falls, so too would feelings, memory, and every other function but basic survival and raw tortured intellect. I wonder if that what serial killers feel, the emptiness, the rawness, the lack of feelings or regret.

I wonder... if environmental hormone suppression is part of the cause we have behind people who cannot cope with living in a normal sense. But that matters not to me.

...psychiatrist, priest, rabbi, and a psychologist

He wanted to know if there was a good enough reason to see a psychiatrist, psychologist, rabbi or a priest. How he figured I'd be a good person to ask, I don't know. You don't carry physical marks of your time talking to a confessor. Yes, I have talked with one or two or more over the course of my life. And I am much the better for those opportunities to understand better human nature. How people think of us, matters less than most of us would assume, because we know exactly what we think of ourselves.

The difference between types of confessors is really simple, the priest or rabbi will cast their aid in a form of religion. Should someone go see one? If the phrase, "Remember the time you did a bad thing, and someone suffered because of it?" causes you a sudden feeling of remorse; Then yes, you should go see a confessor and get that bad thing off your mind. Those little bad things weigh you down, and eventually pull you into a depression generated abyss.

The first time I visited a psychiatrist it was over my personal embarrassment. I was so certain based on everything I had read, that if I could not identify as male living in a strongly masculine male world then I had to be a transsexual. I have since learned a great deal more about this, but at the time this concept was really ripping me up inside. Now at the same time, I am strongly homophobic (that too, is not the right word). However, the very thought of being touched by a male makes my skin crawl, its worse than fingernails on a chalkboard. Which led me to believe I should be a normal male... except that didn't work either.

I hope you can understand this was a very serious mentally challenging problem, not to mention highly embarrassing should my co-workers in the pro-military industrial complex ever find out.

It took me a year of talking to a psychiatrist, before I began to believe that there were good reasons to continue living. To even dream of finding joy and happiness. My world then was a dim dark grey place that wasn't too bad, didn't hurt too much, most of the time. To put it mildly my physical challenges and surroundings had left me a mental train wreck. Fortunately this was all long ago and through many talks with someone who had different insight I got alot better. :)

Today I am better balanced, my own failures pale next to the pressure I felt society was demanding of me, and those I now know are not all consuming. Psychiatrists help us to learn how to think around sticking points in the societal fabric. As do all other confessors. We can learn to be better people, we can learn to think better of ourselves, we can learn... if we but choose to do so.

XXY: Osteoporosis

I've written quite a bit about osteoporosis... but I'll go over it again here, this is a cross post from another site. Invariably people have questions about this, and there is so little written on the topic specifically applying to Klinefelter's Syndrome. It galls me that doctors are the source of most of the mis-information concerning osteoporosis. Know the facts before meeting a doctor, you might just save your own life.

The mechanism in biology that is called osteopenia and osteoporosis consists of losing bone faster than it is replaced. To understand whats happening you have to understand how you gain bone in the first place. The body takes calcium, vitamin D, trace minerals like manganese, and using progesterone does a series of chemical conversions to create osteoblasts (new bone structure), which is then attached to existing bone. The second part of this mechanism we have to understand that bone structure does not last forever, and the body has a process to break down old bone structure, this process works faster in the absence of estradiol (higher the estradiol the more bone retained). We can say that at no point in the process of building new bone or removing old bone does the body require testosterone, ie.. testosterone is not required at all. For some reason this common misunderstanding that high testosterone is required to stop osteoporosis continues, probably because it is easier than to tell males that if they have enough testosterone then their body will naturally convert some into estradiol.

The basics of osteoporosis and hormones:
You need progresterone to make new bone.
You need estradiol to prevent the wasting away of bone.
Testosterone has nothing at all to do with bone.

Vitamins and Minerals needed for bone health:
Calcium 1400 mg daily.
Vitamin D 1000 UI daily.
Manganese (take a multi-vitamin, you need an incredibly small amount).

So about Vitamin D... the experts really don't have a clue how much you need. Until 2007 they assumed that 400 UI was enough because 60 years of studies showed it was enough to eliminate rickets. But gasp in 2007 the new target became 1000 UI. I personally take 2000 UI, and thats probably closer to the target. I would not be surprised if in 10 years from now, circa 2020 the new target for Vitamin D is closer to 10,000 UI daily. For all the concern about UV caused cancer, we need sunlight exposure or some form of UVB replacement. A white skinned person gains 10,000 UI of vitamin D in about 10 minutes of full body exposure to sunlight near the topics.

Estrogen Blockers:
Be very careful with these, since blocking your estradiol is perhaps one of the most dangerous things you can do. The lack of estradiol causes bone wasting, ie.. osteoporosis.

What you can do:
1. Get your hormones balanced. I don't care if you choose male, female, neither, both, or whatever.
2. Do weight bearing exercise for at least 3 hours every week.
3. Get a balanced diet of foods, and take vitamins.
4. Avoid smoking.
5. Get a normal level of 5 hours per week of basic stamina building exercise, like walking 3.5 miles in an hour.

So what does Klinefelter's Syndrome have to do with Osteoporosis...
If you are XXY, and lead a sedentary life you will get osteoporosis, if you lead an active life and have a bad diet you will get osteoporosis. Be aware of this, and get healthy. Unlike the average population we are at risk for osteoporosis from childhood if we are sedentary.

Testing for osteoporosis:
Dexa Scan will determine the level of relative bone structure that exists.
Low progesterone is an indicator of many problems.
Low estradiol is an indicator of bone loss.

If after a dexa scan that is positive for osteopenia or osteoporosis your doctor does not test you for progesterone and estradiol then you have a problem and need a better doctor. Unfortunately most doctors are ill-equipped to provide treatment for people with Klinefelter's Syndrome, so you have to protect yourself.

XXY: Maintaining Good Health through Walking

From personal experience jogging is too harsh on the body, especially the out of shape or overweight body, and lifting weights alone doesn't lose weight. Cardio exercise is what helps people to lose weight, and most serious fitness people include an element of cardio in their workouts for this reason. There is a misconception, mostly among men, that working out to lose weight means going to a gym and lifting weights. While it is true that increasing muscle will help the body to burn more fat, the benefit pales next to the action of doing a cardio workout. If you are just starting out to lose weight, start with the cardio and work forwards.

Cardio (weight loss):
I recommend simply walking at a hastened pace for as long as you can and gradually work that up to 1 hour. Your target speed is 3.5 miles per hour, and about 5 kilometers. If you're using a jogging machine, skip all of the uphill/downhill/fancy options and set a hastened pace and walk. Make sure you drink plenty of water.

A second option is swimming laps. Hop in a pool setup for lap swimming, do a front crawl (nothing fancy..) and swim as far as you can at a slightly hastened pace. Your target is to develop the ability to swim for 1 hour at a hastened pace.

Second requirement for losing weight:
Eat healthy. That means Mediterranean diet and no fast food. A Mediterranean diet consists of 2/3rds vegetables, few or very minimal sauces, some fruits and nuts, and very small amounts of meats, breads, or pasta's. No sugars or oils. And limited amounts of dairy products. If you cannot tolerate, like some people cannot eat/drink dairy then find a normal substitute. Avoid manufactured foods.

Lastly drink lots of water....People have suggested its possible to drink too much, and yes technically it is possible but its extremely unlikely that anyone who isn't running marathons will ever reach the point of too much water. It is really hard to force yourself to drink too much water, without first forcing your endurance far beyond the limits. By the time you have worked a physical regimen to the point where you have achieved sufficient physical fitness to push to the limits (this isn't possible at the start) then you will understand this better. For now, don't worry about it.

Here's the fun part of cardio for an hour at a hastened pace. When you're done, right after finishing, you should immediately drink a beverage that will restore electrolytes. My personal favorite is about a pint sized portion of chocolate milk (about 6 oz or less). A small energy drink is also acceptable, provided it is not loaded with caffeine. This should have some sugar, salts, and potassium. This burst of sugar is your reward for success, and the electrolytes will help your body recover from the stress of exercising. When it is available I like to make a blue berry and vanilla yogurt sundae, as my treat (again, limited to 6 oz or less).