Digital Life in a Binary World

I reject the Klinefelter's Diagnosis

2011-09-19T18:43:00.000-07:00

Specifically:
I have 47 chromosomes, called 47, XXY or just XXY, however I reject the notion that I must be male.

Line by line if I must, that diagnosis was clearly made for individuals whom believe they are male, or whom are male identified. Unfortunately, I am not male identified. Trying to force me to live in a square little box just isn't going to happen, not only do I not understand males (really its frustrating, males can make so little sense), but often I complete miss their entire point. They find it upsetting, much like dealing with their wives I imagine, and so do I.

Lets start with what is published:

http://men.webmd.com/tc/klinefelter-syndrome-topic-overview

Klinefelter Syndrome - Topic Overview

What is Klinefelter syndrome?

Klinefelter syndrome is a genetic disorder that affects males. Klinefelter syndrome occurs when a boy is born with one or more extra X chromosomes. Most males have one Y and one X chromosome. Having extra X chromosomes can cause a male to have some physical traits unusual for males.
Many men with an extra X chromosome are not aware that they have it, and they lead normal lives. Males who have Klinefelter syndrome may be described as XXY males or males with XXY syndrome. Klinefelter syndrome occurs in about 1 out of 1,000 males.

What causes Klinefelter syndrome?

The presence of an extra X chromosome in males most often occurs when the genetic material in the eggs splits unevenly. But it can also occur when the genetic material in the sperm splits unevenly.

What are the symptoms?

Many men who have Klinefelter syndrome do not have obvious symptoms. Others have sparse body hair, enlarged breasts, and wide hips. In almost all men the testicles remain small. In some men the penis does not reach adult size. Their voices may not be as deep. They usually cannot father children. But they can have a normal sex life.
Some boys with Klinefelter syndrome have language and learning problems.
See a picture of a male with Klinefelter syndrome .

How is Klinefelter syndrome diagnosed?

Klinefelter syndrome usually is not diagnosed until the time of puberty. At this point, the boy's testicles fail to grow normally and you may start to notice other symptoms.
To find out if your son has Klinefelter syndrome, your doctor will ask questions about his past health, do a physical exam, and order a chromosome test called a karyotype.
Klinefelter syndrome can be detected before birth (prenatally) through genetic tests on cells collected from amniocentesis or chorionic villus sampling (CVS). But this is not routinely done.
In adult men, lab tests in addition to a karotype may be done, such as hormone tests or a semen analysis, if Klinefelter syndrome is suspected.

How is it treated?

Males with Klinefelter syndrome can be given testosterone, a hormone needed for sexual development. If treatment is started around the age of puberty, it can help a boy have more normal body development.
Testosterone is given by injection or through a skin patch or gel. The treatment usually continues throughout a man's life but does not help infertility.
Speech therapy and educational support can help boys who have language or learning problems.

How can you help your son?

If your son has been diagnosed with Klinefelter syndrome:

Recognize your feelings. It is natural for parents to feel that they have done something to cause Klinefelter syndrome. But this condition is a genetic disorder and was beyond anyone's control. Allow yourself time to deal with your feelings, and talk with your son's doctor about your concerns.
Educate yourself about the disorder. The common problem for parents is fear of the unknown. Educating yourself will help you learn how to help your son.
Support your son. Provide education appropriate for his age about Klinefelter syndrome and give him the emotional support and encouragement he needs. Remind him that most men who have Klinefelter syndrome go through life with few problems.
Be actively involved in your son's care. Talk with your doctor about his treatment. If counseling for behavioral problems is needed, or if your son has difficulty reading or has poor verbal skills, get help from qualified professionals who have experience working with boys who have Klinefelter syndrome.
Encourage your son to take part in activities to improve his physical motor skills, such as karate, soccer, basketball, baseball, or swimming. For more information, see the topic Physical Activity for Children and Teens.
Work with your son's teachers, principal, and school administrators.
- Contact his teachers on a regular basis to compare how he is doing at home and at school.
- When appropriate, let your son be present for talks with his teachers. Use brief notes, telephone calls, and meetings to identify and solve problems.
- Provide articles and pamphlets to your son's teachers and school principal about Klinefelter syndrome.
Encourage your son's independence. Although it is important to be supportive, realize that watching over your son too much can send the message that you think he is not able to do things on his own.

___________________________________

Usually I like what is published on WebMD, the material is succinct and fairly accurate, however this article makes it clear that I cannot be among this group. Aside from not identifying as male, that is. Do you notice how focused into men, boys, and words like "your son"; This article is rife with assumptions.

Let me make this perfectly clear, I was born with a perfectly normal body type with an excess of DHT, but not from an excess of testosterone. Because of this issue I was affected in various negative ways such as I felt ugly amongst the female population. And it is a great hardship to me that despite seeking professional help they only ever point at this doctrine and claim I *must* somehow despite all sanity be something I cannot be. Doctors are insane, perhaps? Or merely stupid.

Looking at the symptoms and I'll add a few more since the article missed some of the more of telling ones:

have sparse body hair

Check.

enlarged breasts

I have ordinary, normal, breasts, a B-cup, although I usually do not wear a bra by personal preference.

wide hips.

Size 40, thats what it takes to get male jeans to fit, fortunately women's jeans usually fit a bit better. It would be depressing thinking I was obese because males get larger from the hips and don't have smaller waists.

In almost all men the testicles remain small.

Is that what those bumps are supposed to represent?

In some men the penis does not reach adult size.

I think the penis is overrated, seriously.

Their voices may not be as deep.

A singing teacher once put it this way, "You have a nice alto, or a tenor most singers would die for."

and

Leutenizing hormone levels are very high (for testosterone)

False, mine is low, has always been low, don't expect to ever not be low. And I use estradiol, with a normal testosterone level of 15, scale of 0-1000, normal range is 350-800 ng/dl. Yet leutenizing hormone remains low.

Follicular stimulating hormone can be high (for estradiol)

Low again.

Testosterone levels are low to very low (under 400 ng/dl, scale 0-1200, normal is 350-800).

Mine were very low, no surprise really, not to mention my testosterone levels have always been in the normal range for women; That is under 55 on a scale of 0-1000 ng/dl.

Estradiol levels are above male normal levels (over 50 pg/ml on a scale of 0-400)

I ranged from 120-150, scale of 0-400 pg/ml, again the normal range for women.

Fingers counting the thumb as 0, digit 1 and digit 3 are the same length (indication of low testosterone through puberty).

My skeletal structure belays a certain evident estradiol influence, not neutral as you would expect of someone with a low testosterone.

Lacking in the common testosterone caused bone spurs and additional bone growth males bear. Otherwise known as a neutral body type.

Completely lacking.

As if somehow I am to be blamed for existing and looking different, hello? I am not and have never been male, psychologically or otherwise. A good portion of my life was spent with people believing I was female, even taking umbrage that I could somehow be anything but female. Women tend to take it quite badly when they believe you are lying to them, about something as simple as ones gender. Not nearly as badly as males, and I have learned to be stealthy, quiet, and hell, deal with it.

DEAL WITH ME

Onnineko

Endocrine Anomalies and the Function of the Liver

2011-06-23T19:35:00.000-07:00

Some time ago it occurred to me that the blackouts (caused by ...fructose at a guess), exhaustion (caused by wheat..), abrupt puffiness (some meds I'll never touch again), and a few other issues might have something in common to the brain. So I started researching how the brain is fed, brain food specifically. Which led me to Cirrhosis, the state in which the liver stops functioning and passes toxins to the brain via the now impurity laden blood.

Ooooooooh and the lights snapped on!

What I had to ask causes the liver to function... and of course this was obvious that afore mentioned endocrine system, which doesn't work all that well, if at all. Oh yes, this picture comes clear and it isn't pretty. But...!... the picture is clear for a whole class of people, I just happen to be the pigeon; Impurities of toxins passing through the liver and into the brain, can we say alzheimer's (memory loss). Allow me to draw some lines in the sand, no wait lets not. Could it be that the underlying theme of significant major disease in the USA is caused by the "good living" of the USA and the torture we force our bodies to endure for a lifetime might have some effect on burning out the ability of the liver (used to call this liver disease) to function. My cause was a medication that disagreed with me, and caused nasty side effects. I can only imagine that forcing oneself to eat, breathe, and drink light toxins will eventually burn out the bodies' filter, the liver.

My world has changed to support this loss, so many bits of food and drink must now be ignored and avoided. But then my personal interaction has not suffered blackouts and memory loss since.

Speaking of fun topics I just recently read about this group: http://aiclegal.org/ or perhaps person, who wrote an interesting letter you can find here: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5406&blogid=140&utm_source=constantcontact&utm_medium=email&utm_campaign=bioethicsforum20110620# . It is certainly the truth that the psychiatrists have no business dictating to me (an intersex person) what gender I can be. Intersex/DSD persons should not be subject to the DSM.

Onni

The Mayo Clinic - and - Onnineko

2011-02-02T23:00:00.000-08:00

Thats right I visited the vaunted and hallowed Mayo Clinic. And I'm still in awe, at the complete waste of my very precious time, not to mention a small fortune spent on what amounted to this statement...."Thats right, you should not eat or drink anything with sugar because of the fructose intolerance. So no sugar. And I want you to eat at least 5 or 6 fruits every day." Like, ugh... excuse me oh amazing one, doctor, whatever you call your ebayed degree, but last time I checked FRUCTOSE is the primary sugar in FRUIT. And then there was the other comment... "you don't bleed so there is absolutely no reason for you to take any amount of progesterone. Only women who menstruate should take progesterone with hormone supplementation." What do you say to statements like that, I mean really where can I start? How about the part where if you tested every single person in the State of Minnesota (it was the Minnesota Mayo clinic), the chance of finding even one other person without a measurable level of progesterone (take the test, prove me wrong.. please...) is negligible. And yes, I really do test at no progesterone measurable, its been tested multiple times by multiple labs and most of those labs didn't believe their own results the first 3-4 tests. I had one lab send 5 separate results for three different machines/testers, and three complete repeats of the last test. So like be a good Doctor, since this being the MAYO CLINIC I find it hard to believe you are completely INCOMPETENT. No wait... I'm rapidly changing that opinion, continuing... Explain to me how it is that someone without any measurable level of progesterone, a hormone used in among other parts of the body the Brain, the Muscles, the Bones (calcium synthesis don'tcha know), the major and minor organs, the skin, and other tissues, and um practically EVERY part of the body; How is it that PROGESTERONE IS NOT USED BY NORMAL HUMANS?

Maybe I should be shouting, I wanted to shout, but that would be impolite even to an esteemed and useless Mayo Clinic Doctor who charged me considerably more than a petty fortune for this display of stupidity. Astounded, Awed, Stunned, yes all of those describe my visit to the premier clinic of America. The supposedly best, and brightest, who play Eugenicist games at the expense of their patients. Can I stress enough how thoroughly disappointed I am by the performance and skill of the so-called best of the best?

I can safely say going to the Mayo Clinic is a death sentence.

A Mayo clinic doctor said, "you don't bleed so there is absolutely no reason for you to take any amount of progesterone. Only women who menstruate should take progesterone with hormone supplementation."

Another Mayo clinic doctor said, "Thats right, you should not eat or drink anything with sugar because of the fructose intolerance. So no sugar. And I want you to eat at least 5 or 6 fruits every day."

No question about it, incompetence, the mainstay of doctors at the Mayo Clinic.

People have wondered why I self treat, it is because of gross incompetence in the US medical world. After continuing to research these simple questions I have reached a couple of fairly simple solutions:
1. In the question of fructose, don't eat it. That includes all fruits and most vegetables. Fortunately I can eat several kinds of green leafy vegetables, and since I bothered to actually study this issue can safely answer my own question...that is I will gain sufficient nutrients from the green and leafy vegetables if I am careful to add select other foods while avoiding all FRUCTOSE (the fruit sugar). Pretty scary that I now can answer a question confidently that a Mayo Clinic doctor was unable, unwilling, or incompetent to answer.

2. And in the matter of progesterone, remember I don't have any naturally and everyone else in the state of Minnesota has an ordinary level men and women alike, although women because of their cycle has more for two weeks of their cycle every month, like no kidding... However, since I have none the answer adroitly sought is that Yes I should take a small amount of progesterone, topically, to avoid complications of the liver. And at the same time recognize that I was initially taking too much, and needed to drop the dosage to about 1/10th. A true specialist, should have had little difficulty reaching the same conclusion in far less time and effort in research than I had to invest. Do you wonder why I consider the Mayo Clinic specialist to be completely unwilling, unable, or incompetent?

People go to the Mayo Clinic to die, that is the quality and skill of care. I am extremely disappointed, to have received what amounted to tantrums of a petty child while spending a fortune on what I anticipated to be the best care in the nation.

Extremely disappointed in the Mayo Clinic.

The Relative Age of Two Genders

2011-02-02T19:50:00.000-08:00

Its been a while since I last posted and in the mean time I have been busy, well, more or less. Among other topics recently read a book by Louann Brizendine M.D., "The Female Brain", and this has brought to light a question: "What relative age am I as a female and as a male?"

Brizendine had several good points, and clearly elucidates a number of issues which have remained a concern for me. Nothing I have ever tried worked perfectly in the attempt to balance hormones, so we try and try again. At the present I have been cycling estradiol and progesterone, I fear perhaps too much progesterone though. And I wonder if perhaps the progesterone deficiency isn't a hereditary issue, there might be some truth in that. Either way, I have literally no testable level of progesterone unless I supplement, and a little bit does feel better. A question I have tried to resolve before is how much progesterone should I take? Even the Mayo Clinic is silent on that one, depressingly silent.

If I could establish a mean age of Female and of Male, then it shouldn't be too difficult to decipher what my brain thinks it needs in the way of hormone supplementation. Pity I forgot to pick up an operating manual for the Human, what part of this deal includes writing one, I really want to know. Okay not really, but the idea is entertaining.

And then I wonder if perhaps the Male aspect isn't necessary to pursue, if only because high levels of testosterone (for a female) causes the same effects a female experiences acne being my personal pet peeve, but also hair loss, aggression, etc... Nothing there I particularly care for, including the coma part I can't remember it but there's a gap in memory and I'm certain I would have hated every minute.

How does one go about estimating relative physical / brain anatomical age?

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

2010-08-09T18:08:00.000-07:00

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

An end to Fillings?

2010-07-31T11:04:00.000-07:00

Tooth Regeneration Gel

Many times I have considered what it would be like growing older and well, I was once diagnosed with osteoporosis. People with Klinefelter's Syndrome (XXY or 47,XXY) often experience a wide variety of issues relating to a dysfunctional endocrine and/or metabolic system. Among those issues is Taurodontism (dental problem of more pulp than bony tooth and enamel), and I have always suspected weak bones lead to weak teeth. The article talks about MSH, a pituitary hormone that participates in the regeneration of bone and incidentally teeth.

See Melanocyte-Stimulating Hormone (MSH) for an explanation of how MSH works, and for the part about how humans have this hormone present in our bodies but unlike animals we do not have a similar production of the hormone from the normal pituitary gland.

From my point of view this is a major advancement in medical knowledge, and the very idea of keeping my teeth and strengthening the bones is definitely a plus. Hope to see more advancements to support the removal of drills and fillings from dental work in the near future.

:)

Onnineko

XXY: Living Gendered

2010-07-28T20:15:00.000-07:00

Today once again I was reminded how focused the average person is into attempting to speak to other people in America. Every conversation hinges on what SEX the person is. When someone looks at me, and cannot decide if they are talking to a male or a female person, there starts a pause. And this pause can take quite a long time.

Some days I feel playful, and when they respond say male and address me as Sir, I'll change my response very subtly and leave them looking confused (Oh, I'm sorry .. didn't realize you were a woman.....). But then there are days like today where I'm waiting for cup of Hot Chocolate, its been a long day, I'm tired and really I just want the sweet chocolate and to collapse onto something soft; But invariably (the mask slips what can I say, its tiring) someone decides they didn't understand what I tried to present (male) and there needs to be a determination of what SEX I am before they will hand over the already paid for, afore mentioned sweet chocolate drink.

Why is it so hard for people in the USA to understand that the constitution clearly says right in the first paragraph, "the pursuit of happiness"? Why do they care so much what SEX I or anyone else is... is it perhaps because our language is so focused on gender that we cannot hold a conversation without first knowing the SEX of the person we are talking to in the first or second person... she, her, him, his... Several great minds Fausto-Sterling another others come to mind, have suggested adding more articles to the English language. And I'm sure someone has suggested a gender neutral pronoun.

Would that work, a gender neutral pronoun to replace him, her, his, she, he, etc... ze. Could we dare to simplify the language so that all conversations begin from a common point and to neuter the language so that you don't have to know whats under the coat; You can still be polite and not care about someone's SEX?

Can you help Ze ?

Thankyou Ze.

Excuse me Ze, can I help you?

Ze could easily substitute for man, boy, girl, woman, child, him, his, her, she, he, and ... IT. Strike down the language that binds us, and we can remove the harsh necessity of confrontation.

Ze feels this would be a good action to take, the de-genderizing of the English language. Ze would like for others to consider such an action. Ze would like the Hot Chocolate now, without another lecture on how Ze doesn't look perfectly female. Ze would most like to avoid another long diatribe on why Ze should wear lipstick so other women wouldn't have such a hard time resolving if Ze is female or not. Ze would really like the hot chocolate now, that was paid for 20 minutes ago... and Ze is certain that the other customers Ze, Ze, Ze, and Ze would prefer you to stop thinking in this asinine form of english that requires knowing Ze's sex before providing the drink rapidly cooling in Ze's paws. See, Ze applies to you too. NOW GIMME HOT COCOA!

Ze thanks for short moment, and suggests finding a new place to get sweet Hot Chocolate in a more timely fashion.

Ze regrets that Ze, has no interest in wearing lipstick as some sort of a flashing neon sign to indicate gender for the blind.

Signed, Ze

XXY: Altered Living and Gender

2010-07-11T12:24:00.000-07:00

I am left with a sense of loss today. Yet once again the trajectory of learning has unlocked another key to the mystery of my life. More specifically, I have reached the realization that my parents had to have known that I was not normal because they participated in treatments more than basic health care and that their certainty that the worst possible outcome is that I would be gay. You would not believe their paranoia over the possibility of their child growing up gay, or maybe you would. Very clearly not about me, it is about their fear, that my parents would subject me to what amounts to experimental procedures in order to fix something that was not broken.

What I'm saying is that the body I live for is not as God made me, but as a set of medical professionals aided by my fearful parents altered me to. I have been trying for the past decade now to get copies of all of my medical records. Some of them were easy to get, others that I know must exist because of liability limits in the USA; The holders refuse to acknowledge I was ever treated by their institution. Evidently if we sweep the very existence of what amounts to torture and illegal human experimentation out of existence then there is no need to supply that information to the patient. Originally I thought my parents agreed to these treatments because they feared I might be gay; but then wrote out a time line and realized I was wrong the fear of my being gay came after the treatments. So really, let me get this straight...after being treated for .. years .. my parents only remaining concern about my ability to live a happy and good life is that I might at some future point be gay. Why would I be gay?

Why indeed, would the last fear be their child growing up gay?

What an odd question, that after treatments, with one on going treatment that nearly killed me twice (testosterone, you would think they had learned the first time), why would my parents then hold this one great fear that I would be gay. Would it be because I was not born male? If a woman was heterosexual innately wired to love men you would not consider her to be gay, but if she was "fixed" and told to be a male, and "treated" and told she was a male. Then there might be that fear, "Oh god my baby might grow up to be gay." I would not write this article in this reference frame if I did not have a reasonable basis to do so. Which I do, and its all a medical mess. Just recently in one of those starry blue sky moments where many lines suddenly cross and a miracle occurs and the person has a realization, to know exactly what the problem is; I stumbled on the concept of lunar and menstrual cycles. Of course I know women have menstural cycles, and of course I declined to look into them because I was male; Right? For years I have kept a spreadsheet of my life and how that life goes day to day. It seemed too trivial that a host of the problems I have been dealing with stem from not understanding something so basic, why would a doctor or my parents not have told me about this? I feel betrayed. I dropped a 29 day cycle on top of that spreadsheet, and with two exceptions it matched the odd cycle of 10-12 days a month of anxiety, 4 days of despair, and 6 days of unexplainable moodiness. Without the connection to the lunar or menstrual cycle, I could predict the dawn of each of these happenstances, and could predict months in advance which day I would experience deep despair, or really high anxiety, or panic attacks. It would have to be a failed menstrual cycle. The hormone levels are supposed to rise and when they do not anxiety, panic, and despair each a worsening level of response to something my body is screaming that it needs. This happens because those hormone levels estradiol and progesterone do not rise. I have taken the time to get numerous tests and re-tests done. And every time pre-cursor hormones like Luteinizing Hormone (LH) and Follicular Stimulating Hormone (FSH) as well as the other precursor hormones are always a steady low level; A very low level.

Some would call this panhypopituitarism in a female. Others are calling it Klinefelter's Syndrome in a male with primary hypogonadism and unexplained issues relating to the pituitary/hypothalamus axis, or just Klinefelter's Syndrome with primary and secondary hypogonadism with other issues. Regardless of what the many specialists want to call it, why is it always me who has to invent a method of treatment?

When I acknowledge this certainty, and I embrace the 29 day cycle all the anxiety, depression, panic, and despair become a sudden distant memory. To believe that now for the first time in almost 30 years I can enjoy a month without complications, is almost unbelievable to me. Because of the very well documented women's menstrual cycle, I know when to add estradiol, and when to add progesterone and there is no more anxiety. To think how many years I have struggled with this, and they never told me.... not once.

Does not leave alot of trust for the medical field, nor for parents. Whose ethics, fears, and eugenicist morals are worth more to them than treating patients fairly, honestly, and with forthright cause.

About living as a woman.. I was one once. I have lived as one since. And now I blend both the female and the male. And to hell with all the people who can't deal with it.

Onnineko

Its yet another working Saturday...

2010-06-19T11:47:00.000-07:00

Thats really why I feel so chatty. Up 5 hours early this morning to do a database roll over for a corporation, and sitting here waiting for an 80GB file to to finish loading takes awhile. Leaves me time to think, to write, and to ponder what could be; What should be?

Here I am, life is going so-so-ish. I don't have any really pressing medical problems right this instant, however, I would love to lose about 100 lbs. That would put me at about 150 lbs, which for a woman is a normal range. This raises some issues though, if I were 150 lbs, then telling people I am male would be taken as a lie. And no amount of justification or state ID's would be accepted to prove otherwise. There was a time I lived as a woman, because of this. And to be brutally honest, I loved it. Interacting with people was so natural, simple, it was possible to have friends. Even now, today, I vaguely remember what friends are like. You see, I traded friends, years ago for money. Working in the high and mighty corporate world doing amazing work in the IT field, thats me, IT expert. Male. Highly paid. No friends. Oh don't misunderstand, I have a couple of "male friends", we can go years without a single letter or note or visit, or anything that would assuage the sense of loss in me. Is it so wrong to want more than that?

If there was any issue (nevermind the medical picture, thats just ugly).... that strongly affects me it is the complete lack of friends. Women don't want to have anything to do with males, oh more than a very limited level of interaction. There are all kinds of American-Christian culture problems that arise when someone "has coffee" with another man's wife, and happens to be male.

Could I pass as a woman, of course. But the me who is a highly desired IT expert isn't female, changing that now would leave me jobless. I have seen excellent technicians disappear from the circles and the corridors of the nations elite for so much less. And don't get me started on just how horribly hostile this world is to gay or lesbians, however, transsexuals they throw to the wolves. And yet I skate through the middle of it, so far ignored, or just needed. I work in a world built upon masculine trust. Informing those people whom I work for that .. oh by the way, I'm going to be a girl from now on, would be a terminal violation of trust. Have I ever mentioned that masculine trust has got to be the most absurd system to use as a basis for the security of an organization?

Friends... this is about friends. I don't have any. Oh a few pixels on the computer, some tellers of tall and glorious lies. I know of a few intersex people, we chat occasionally. Its not the same thing as a true friend. Perhaps that is why I write my sorrow to the world.

If I could be accepted as a woman, I would be one. But because I cannot be accepted, I must first create a stable place of rest for myself out of whatever means necessary. For someday I will stop and I will be myself, no pretensions of trying to be masculine. No struggle to maintain the big lie, of what I am not.

The sad part is that I don't even qualify as a transsexual male... although I am one. This exile forced upon me at an age to young to appeal. This sadness enforced by society's needs.

Onnineko

Self-Treatment and Secondary Hypogonadism

2010-06-19T10:04:00.000-07:00

I was writing a letter to a friend, when for some reason this topic just leapt onto the page.

The worst part of self-treatment is that even with a mountain of medical documents, lab tests, doctor's opinions (signed and certified) all of the conjecture that we mere mortals can apply to the awesome field of medicine pertaining to ourselves is casually dismissed by every single Doctor we have to talk to. And do we get a fair hearing? Never. It takes upwards of 5 hours to go through the documentation and present all of the lab tests, the chronological order, the reasoning, the other doctors' opinions supporting the prognosis, and then yet one more Doctor will calmly admit, "Hey this is a really complex case." Like no shit, really? What usually happens is that the Doctor doesn't have those 5 hours, and it takes months (...years) for Doctor A to talk to Doctor B, C, D, E, F, G, and H in order to ascertain if I can be believed when I say this is a tad complex and I need more than 15 minutes of your time to discuss treatment options for secondary hypo-everything.

Basically, simplisticly, the human body is like a binary feedback system; It functions like a state machine or a computer, if you will. A computer has chips called ALU's which do simplistic mathematical functions like, voltage high + voltage high is 1+1... The body does this too, and one of those sub-components is the Hypothalamus (a tiny organ in the base of the brain, next to the Pituitary Gland. For example, when a individuals Testosterone level is high, the feedback circuit sends a positive signal to the hypothalamus which then stops pushing out pre-hormone signals to the Pituitary Gland for Luteinizing Hormone, a precursor for the production of Testosterone, to stop the Adrenal Glands or the male testes making more Testosterone. Which is all good and wonderful when it works properly.

In pursuit of my personal medical problems, I have had to work through the pathways of mostly non-standard practices to fit together some semblance of a plan. Most of the knowledge we and the Medical Establishment has at this time is sketchy at best. Really we know very little more today, than Doctor's knew 200 years ago about how the functioning of the human body really works. Just because the body has several mechanisms which act sort of like a state machine doesn't mean the results of the whole system are that simple. Mix into this mess, Klinefelter's Syndrome and its a real mess. Or perhaps I should say, add Secondary Hypogonadism to Klinefelter's Syndrome and its far more complex than just "unknown". Thats why they call Klinefelter's Syndrome a syndrome, we do not know what causes it; The same with Hypogonadism, we can only say, "Odd, it doesn't work right."

So thats where I am... a pituitary/hypothalamus gland that produces the same level of pre-cursor hormones all the time. When I physically push hard my levels of some hormones do not rise like a normal person's does, instead I fatigue quickly and take hours or days to recover what takes everyone else seconds or minutes.
(borrowed from: http://www.webmd.com/cancer/tc/ncicdr0000579645-general-information-about-pituitary-tumors, the information is still good, if not perfectly formatted for my issue, I'm sure there are better references)

Hormones made by the pituitary gland include:

Prolactin: A hormone that causes a woman's breasts to make milk during and after pregnancy.
Adrenocorticotropic hormone (ACTH): A hormone that causes the adrenal glands to make a hormone called cortisol. Cortisol helps control the use of sugar, protein, and fats in the body and helps the body deal with stress.
Growth hormone: A hormone that helps control body growth and the use of sugar and fat in the body. Growth hormone is also called somatotropin.
Thyroid-stimulating hormone: A hormone that causes the thyroid gland to make other hormones that control growth, body temperature, and heart rate. Thyroid-stimulating hormone is also called thyrotropin.
Luteinizing hormone (LH) and follicle-stimulating hormone (FSH): Hormones that control the menstrual cycle in women and the making of sperm in men.

In the past I have used progesterone to attain some semblance of managed treatment (self-treating still) for the lack of effects of all of these hormone pre-cursors. Even though it is clear that having some, if not all, of these effects occur resulted in a healthier (we're not sure) and happier me. I cannot stress enough, that no where have I found documentation to suggest anyone else has ever tried to treat this problem, and certainly not with Klinefelter's Syndrome also. And I chose to use Estradiol as my sex-hormone of choice, since that aligns with my personal views more correctly than Testosterone does.

About a year ago, I stopped using progesterone to do some tests... and then forgot all about the tests, and the intersex community, and a number of other things. The lack of progesterone had a significant and clear impact on my ability to function intellectually, and still does. I'm trying to work through, it is painful and hard to remember enough to manage this, if I should beware or take progesterone again. I mean, I must have decided to stop progesterone for a good reason. And a few days ago I finally put the whole puzzle together again, no progesterone is an unhappy Onnineko. I had wanted Doctor's to do an ACTH test for the pituitary system for testing for possible complications of CAH, and the Doctor's then refused to do the test. And I forgot about a great deal of what was short term memory. Bastards! This is the best treatment I can buy, and its barely adequate for 2-3x the cost the average corporate American pays for health care. Have I ever mentioned how distasteful it is to work with the Eugenicists in the American Medical establishment? They take our money and then give nothing in return because its against their ethics to treat people who are considered less than perfectly normal. Grrr!

I self-treat, there are no choices it is self-treat or die of neglect.

What to do .. What to do .. The US medical establishment is hopeless and becoming less competent every year. Progesterone would and has in the past had a strong positive impact on my life. And despite the Doom and Gloom cast by the doctors, I'm still here. Quite possibly because I choose to self-treat. They (the Doctor's) have been counting down my end of life for decades, and they're still wrong. I have some questions, such as:

Would attaining a diagnosis for Secondary Hypogonadism change anything in my ability to continue self-treatment?
Would attaining a diagnosis for Secondary Hypogonadism change treatment, at all?
What exactly am I trying to do with treatment? (live 1000 years of course. :)
Everything I have points to using progesterone is a definite positive.
So why am I waiting?

Another simplistic view is that Secondary Hypogonadism is like CAH, there are similarities because neither the person with CAH, nor the person with Secondary Hypogonadism is getting enough cortisol. At first I thought my case might have something to do with this, and I eventually found a Doctor willing to test and eliminate this possibility, not that I could get the Doctor to help in any other way! He was willing to listen though, and willing to do a few basic tests to rule out this quite obvious question. I, just like someone with CAH, do not get enough cortisol, however taking progesterone does appear to help correct this issue. We cannot say what the long term effects are though.

I'm still mostly an overweight 5'10" androgyne at 250lbs an apple of desire :)... losing weight would be nice, I'll guess my average weight is probably around 140-155 lbs. This isn't a good snapshot of who I am though. I work out, can do 30 pushups, more situps, and practice martial arts. I walk, running hasn't worked too well, but I can walk for hours and go miles. I live on a limited diet, and really wouldn't know what to do with 2000 calories its hard to eat so much. My weight is an extension of a medical condition, not my lifestyle.

XXY: Medical Establishment is playing God again...

2010-06-18T19:11:00.000-07:00

Excerpt from:
http://www.hawaii.edu/PCSS/biblio/articles/2000to2004/2004-ais-and-klinefelters.html

Title: Androgen Insensitivity Syndrome and Klinefelter's Syndrome

Authors: Milton Diamond, PhD and Linda Ann Watson, MEd

Gender expression

Infrequently discussed in medical descriptions of KS are individuals’ concerns with gender expressions and feelings. An unknown percentage of persons who have KS experience androgynous or feminine feelings that can develop at an early age [50]. Some people who have KS consider themselves to be transgendered [50], others considered themselves to be intersexed [69], and others considered themselves to be transsexual.

One of the most noted persons who transitioned gender is Carolyn Cossey, a “James Bond girl.” She was raised as a boy, but changed to live as a girl at a young age, and became a famous model; her karyotype was found to be XXXY [70].

Wyler et al [71] found that two of nine candidates that they recommended for transsexual surgery and female hormones had KS. A host of investigators similarly reported cases of men who had KS who transitioned to live as women or who harbored aspects of gender dysphoria [72-74]. Walzer and Hurwitz [75] concluded that all of the KS patients that they saw viewed their personalities as dual male and female and wrote: “Investigators periodically report they can find no increase in sexual deviancy in patients with a chromosomal abnormality. Only too often the methods used to ascertain the presence of such a deviation. . .are not conducive to discovering it.” We know of two relevant cases; one is a mathematics professor who underwent sex reassignment surgery to live as a woman and a previous medical student who is presently in the process of transition. The frequency of gender change in KS is unknown.

Several papers have commented that homosexuality among those who had KS was not found among their subjects [46] or that the prevalence was not any different from that seen in the general population [42].

_______________________________________________________________

Why do Doctors think they have the only right to choose for the rest of us?

When talking about the number of Klinefelter's Syndrome (KS or XXY) people who choose to transition and live as females, medical science doesn't know how many of us have thoroughly rejected treatment with testosterone. I would like to point out as Dr. Diamond noted above, "We know of two relevant cases; one is a mathematics professor who underwent sex reassignment surgery to live as a woman and a previous medical student who is presently in the process of transition. The frequency of gender change in KS is unknown."

Despite numerous instances of individuals whom are transsexual whom have transitioned so well that it is improbable that anyone can tell them apart from a natural born female; Despite people like myself whom have told doctors over and over, NO! I will not use Testosterone, now or ever. The medical establishment still turns a blind eye to what should be obvious, these are Doctor's they're neither stupid nor dense. Overworked perhaps. But if its obvious to us, why can't they see this?

Transsexuals are known to be possibly as many as 1 in 2000 people, and the incidence of Klinefelter's Syndrome which is any chromosomal mixtures of many X's and Y's, is 1 in 1000 people. Why can we not test transsexuals for intersex conditions, and perhaps show that half, or more than half of all Klinefelter's Syndrome "males" happen to have transitioned (many despite being assigned male and then tampered with to make sure they'd be male) to Female.

I choose Androgyny. Its my choice to make, and no one else. Others have chosen Female, and some, credibly some are still male. I would like to know what percentage of the KS population (The Whole Population Transsexuals included) are Male, Female, and Androgyny.

The omission of this fact, all the while insisting that People like me, XXY people, Klinefelter's Syndrome people, whom the Medical Establishment will immediately admit they really don't have a firm grasp on the medical pathology of the Klinefelter's Syndrome, REFUSE to admit that we are anything but male. And yet the number of XXY people who have chosen female, or Androgyny, or whom were born FEMALE (its rare for them to test females at all, but this is documented), or whom are and have chosen male is Unknown.

Let me say that again... the medical establishment admits they don't understand Klinefelter's Syndrome. But they are absolutely certain that we have to be male, even though many have chosen not to be.

By obscuring the facts the Doctor's are playing at being Gods.

I was born Androgynous...I have lived as well as I can, as God made me.

Onnineko

XXY: Personal Experience Using Estradiol HRT

2010-05-14T23:28:00.000-07:00

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.

XXY: A small but vocal issue...

2009-08-28T10:40:00.000-07:00

I am left today with a fear of the unknown. For more than three years now I have participated in singing studies, and my vocal range has significantly improved throughout that time. Indeed my range continues to improve, breaks are worked through, and my natural normal speaking range has changed, yet again. I have finally after all this time been told by one vocal instructor that my tone and clarity is much improved, almost acceptable or even, normal. This voice instructor went on to say that if I continue these lessons, then I can expect my normal speaking voice to change yet again...

Yet again.

So I asked myself, what if my normal speaking voice were even higher than it is now? I would be firmly in the higher range for normal women, is this a good change? So I resolved to test the current range and loaded a vocal analyzer and recorded several sets, at various normal pitch levels and lengths including generally happy, long and boring text, a bit down, etc.. Sure enough I'm ranging in pitch from 180 to 280 hz. The spectrograph shows a bit more than the average overtones that an ordinary woman would use; I have perhaps half of the harmonics a normal male would have. In this matter, science is not helping! All this singing is enabling me to use and adjust to what males would call the falsetto voice, or head voice. When I use falsetto the excessive overtones are much reduced from my full voice, ie.. closer to a natural female. And to make matters worse.. (better?) I took several sessions with another voice teacher whom started using the term counter-tenor, almost immediately. One test this instructor likes was the natural sigh, and tricky person he is, including it in the lesson without telling me about it first; But the result, middle C, was not what I expected. Middle C is the normal speaking pitch of women, and an half an octave to an octave high for 40 year old men.

All knowledge is good, the more you know, the more you understand, the more you can make personal choices about. Only in ignorance can others make choices for you. But what do I choose about the voice? If I want to present as male, then there are a number of challenges to overcome, and not the least is the appropriate speaking pitch. Males only exceedingly rarely use a pitch higher than 150 hz, and then generally only for terror, fear, or capitulation. If I were to use such a pitch, say 200 hz, then that is already one failure in presenting male.

On the positive side of this issue I no longer have serious throat pain from attempting to speak too low for too long. It is still hard to speak low, and has become more difficult to do so without being deliberate in the doing. It is disconcerting to sit down to a vocal analyzer and comfortably, naturally, speak at what is a middle voice for a woman. Another positive (?) is that as I become more competent at singing I can better hold my part, instead of following whom ever seems to know their part well. This is good, and bad. Good because I no longer automatically (well not often anyway) pitch match with other people, especially males because they still talk too low and I can end up speaking from the throat if I am not prepared. Bad because my natural vocal range appears to be +/-3 notes of middle C. I still pitch match with women who use higher pitches, because I am not as comfortable with that singing range, B below middle C to the G above.

Supposedly according to both vocal instructors that as I work out a normal high tenor full voice, this will give me an alternative to the falsetto that I find most comfortable (and not by choice!). Remember I am trying to live and work as a male, this makes doing that very awkward.

Life is...

What do to when depression cannot be avoided...

2009-08-04T19:34:00.000-07:00

For the first 30 and some years of life, starting about the age of 12, and until 36 I felt a great deep depression. Now I'm not talking about something you can take a couple of pills and sleep on. Rather depression built upon pain. Lets see if I can pain a picture so bleak, your very world turns grey, dismal, and promises nothing more than the pain that is, the pain that will be, and the pain of merely drawing a breath. Most people will tell you they have once or twice in their lifetime had a morning so horrible that the very thought of getting up seemed too much effort to attempt, can you imagine every morning being like that... Some people know what exhaustion is, that deep binding crease through your body that drags you down constantly, muddies your thoughts, and makes a single set of stairs seem like a hurclean effort to climb. But very few people experience this effect for more than a short period of time, what would your life be like if tomorrow morning and every day thereafter you could look forwards to getting up in the morning exhausted as the last time you overdid work and was so tired that you only wanted to sleep. What would life be like... depression is physically, mentally, and emotionally taxing.

And then there is the pain... Most people have at one time or other in their life sprained a muscle, and they know that walking on a sprained foot is painful. Picking up a pen with a sprained hand is painful. Some people have broken limbs and they know the pain isn't in the break, its later, after the fact. The pain comes from trying to use that arm or leg, to push or to pull even lightly. Anyone who has thrown out their back and tried to stand up knows what pain is, it is crippling. I have seen grown men dislocate a shoulder and whimper like a child. No kidding, dislocations of any type hurt. Lets suppose just for a moment that tomorrow, the moment you were going to get up you could look forwards to the pain of dislocating or pulling a muscle in your back, every single morning, forever. In the next moment as you go to swing your legs out of bed, several other muscles were going to complain and twinge in pain. And it wasn't going to stop. Old people know the body creaks, but once you start moving the pain can be come tolerable. Motion reduces the effects of pain from joints not moving. Lets say that moving around does not reduce the amount of pain. How would you view your life then, I wonder... dim, slow, pain, grey, and dismal.

Now everyone has a choice they can accept life on its terms or they can check out (commit suicide). Sounds pretty harsh doesn't it. For my first 3 decades life hurt, it was grey, it was dismal, and I bore daily an amount of pain that would kill most people. In order to survive, you have to accept that pain is your life. And I don't say that casually, I don't think most people understand that when you have to juggle or control your own centers of pain that it might make a certain amount of sense to overload one side than the other. Neither are we talking about someone that cuts them selves to feel anything at all. No this isn't dementia, the individual need not be crazy. Rather the person can use the fact that the mind can only concentrate on one thing at a time. Sometimes it is necessary to redirect pain. I know how to do that... unfortunately...

So the basics of managing pain, depression, and overcoming insurmountable odds of accomplishment in our world. Step 1, you need a plan of action. I had a method that would result in things happening, but it required three parts to work.

A. You must train yourself to understand that when it is time to move, you HAVE to MOVE. Period. I don't care if you're lying on the ground in more pain than the world should have visited on anyone, you have to MOVE. You CANNOT NOT MOVE. Period. No exceptions, ever. I don't care if you've just been shot and are dying in the street, if your alarm clock goes off, you MOVE.

B. Keep lists of things you MUST do. When it is time to MOVE, you MUST do whatever is on the list. I don't care how much pain or exhaustion there is. The human body can operate on no sleep and in deep pain, the only limitation is you.

C. Never make a decision about anything important in less than 8 hours. Once your decision is made, DO NOT EVER second guess your choice.

This method kept me moving in a grey fog of pain and shock for 3 decades. I'm only glad I don't need it anymore.

Using this method, I have finished a college degree, completed a black belt in a martial arts, and worked as a professional in the IT world and achieved success. I have owned businesses and property. But I did not have anything resembling happiness, this was earned through determination. Life is, learn to live with it...

**
an aside, I no longer use this method, the pain of my first three decades has become managable. I no longer experience depression as a constant companion. Most of the pain of life has become managable. But this article is to talk to my years from 12 to 35.. :) there is hope. Although, I had to find my own answers the medical profession remained vocal and completely wrong.

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

2009-07-07T13:30:00.000-07:00

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

2009-04-08T12:46:00.000-07:00

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

2009-04-02T10:22:00.000-07:00

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).

The Importance of Using Vocal Resonance

2009-03-17T09:57:00.000-07:00

Everyone, but especially Americans with our culture of listening to music, have to at some point in their lives learn to resonate the pitch and tone of their voice. I am starting this process at this late date in my life, because I recognize the importance of doing so. A proper vocal expression does not cause pain to the participant in 5 minutes of speaking or singing.

You see, I experience pain, soon to be a thing of the past, when I speak at the low pitch I have found commands respect from males. This is a common problem for males in the American society, our culture dictates that we speak lower to attain the valued age (older people have a naturally lower pitch). Our culture dictates that respect and income is a function of age for most wage earning jobs. That and our non-singing society that spends its time "listening" not participating in song, has not learned to resonate vocal pitch and tone.

So you're probably asking, what does this have to do with someone whom is intersex?

Hi, I am either a high Tenor, or a counter-tenor, or a contra-alto, or maybe just an alto... it depends on your view of gender. In the world of singing they are extremely stratified on gender. Men are Bass, Baritone, or Tenor and anything expressed in a higher vocal range is falsetto (a partial expression of the full male voice). Women are alto or soprano. Never shall there be a male who is an alto, nor a woman who shall be a tenor. Lets suppose for a moment that someone whom is intersex did not have the vocal drop that males incur during puberty. There is a good book that I'd recommend to anyone wanting to learn to make a better vocal expression: "Is Your Voice Telling On You?" This book describes children of 9 years age as having a vocal range centering on or about middle C (piano keys, page 58). Males when they reach puberty experience a vocal drop of about an octave, and females about half an octave. So how much of a vocal drop do Intersex people experience? This is an entirely individualistic experience for intersex people, so it could be some, none, or all of what the distinct gendered people experience. My own experience is that I can sing from F3 to G5, or mid-tenor to soprano. Because I can sing into a full male voice for the bottom 4 notes D3-G3, transition to a female voice and then sing A3-G5.

I have encountered some specific challenges with vocal range. I hit a puberty cycle about every 5-7 years since 20 years of age. During that time, my vocal range changes, yet again each time. Based on my range, I have someplace between a tenor and an alto range. And I choose to sing tenor in the choir that I participate in, because it is a more interesting part. :) Yet I still experience a challenge, because the bottom of the normal tenor range is too low for me. When I try, as I have done too many times, to sing that low I quickly experience pain, hoarseness, and vocal loss. It is difficult to simply stop singing when in a group, yet with the men, I have to do that for my own protection. Simply does not do to spoil a fun participatory event by going hoarse or incurring personal pain.

So back to resonance. All people generally learn to resonate young, because most cultures have a strong component of singing. However, American's are deficient in this matter. Our culture of Radio, Television, and other pastimes do not encourage participation in singing. As such we are not learning to use natural resonance. You can see this effect in people that experience pain in speaking for more than a short time, for example teachers, public speakers, etc... In my case, I often speak to large groups in a professional capacity. I learned early that males command respect through a low vocal pitch, and I have to use every tactic since I look literally 10-15 years younger than my peers. However, use of a low pitch D3, the very lowest pitch I can reach also causes me considerable pain. The book I referenced above suggests that people should talk in a normal range 3-4 notes higher than their lowest note. However, that pitch D3+4= A3, is in a normal female range, and A3 is considered very high for a male. This poses something of a challenge for me.

The referenced range for a piano, is found in the book on page 58. The book describes middle C, as C4, with each C beginning a range. So the keys are the set = {C,D,E,F,G,A,B}, and on the piano there are 7 full sets. The book tabulates using only the white keys on a piano keyboard.

XXY: Memory is a function of estradiol

2009-02-06T10:07:00.000-08:00

There is a common theme that Doctor's adhere to when viewing the XXY individual. In nearly every case the presumption of maleness is first and foremost among those assumptions. And the matter has been studied, albeit if you put all of the studies on XXY people in a stack, the stack wouldn't fill even a single biology text. Unlike most other syndromes not much is really known about XXY people.

I was reading through brain size and comparative function studies of XXY's and males, and the first aspect that stood out was that XXY individuals are only compared to males. And its not at all surprising (similar to a male to female study of similar origin) that the XXY people have smaller heads, smaller brains, smaller everything than the males do. I suppose its completely lost on the doctors studying this material the results for XXY people and females are remarkably similar.

Another study on XXY people pointed out clearly that the XXY brain functions in the same manner that a female brain does when scanned under MRI (magnetic resonance imaging, like a CT scan), that is the thought patterns follow a circle. Where in similar MRI studies the male brain follows a north-south path from the front to the back of the head. Rather odd for a group of people whom match the female brain path to be studied only as males, don't you think? The female brain uses estradiol and progesterone to manage and function.

A brief note about menopause, women are affected by this event, their estradiol and progesterone production slows or stops altogether. One of the side effects of this that is often missed, is that the individuals memory starts skipping small things. They experience forgetfulness. As time goes on, if their body does not produce enough estradiol and progesterone, their mind loses more and more memory access.

Is it any surprise that XXY people, experience this same memory loss in the absence of estradiol and to a lesser degree progesterone?

For XXY people:
It doesn't matter where you get the estradiol from. You can take testosterone or estradiol, but you need to take one or the other to maintain cognitive ability. If you take testosterone your body will convert the excess (thats everything over about 50 ng/dl, scale of 1-1200) into estradiol via the aromatase endocrine conversion. This is a natural function of your body, and it works just as well as taking estradiol directly.

Every-time I write targets, people take it as the holy grail. The understanding and the studies that support XXY health right now are few and far between. The rubbish is getting just as much press time as the scientifically sound studies. This is a work in progress, please understand that.

At this time the target for estradiol is 60 pg/ml, scale of 55-400.

For non-XXY people:
XXY people have a higher than male level of estradiol by default, we're born that way. Some of us are like me, whom naturally has 90 pg/ml, others have more or less. Let me put it this way, males exist and experience severe memory problems due to a lack of testosterone when their testosterone level gets down to or less than 300 ng/dl (scale 1-1200, and some would say 500).

My personal experience of Estradiol and Memory:
I have only ever had 70 ng/dl or less of testosterone. Now if I was depending on testosterone to have a memory, then I would be a vegetable, 1/4th or 1/8th or whatever of the necessary testosterone is not going to maintain the memory. Today my testosterone level is even lower, about 30 ng/dl, and my estradiol level remains high around 80 pg/ml. When my estradiol level falls to 35 pg/ml I start experiencing memory loss. When my estradiol level falls even lower, say 20 mg/ml I lose short term memory and start experience symptoms similar to Alzheimer's, the complete fragmentation of the long term memory and loss of short term memory.

It shocks people when I tell them with the above information, 30 ng/dl testosterone and 80 pg/ml estradiol, that I present and live on the male side of the gender binary. These numbers are not the end of the world! Get past the numbers...

XXY is an Intersex Condition

2009-02-01T22:27:00.000-08:00

Everyday I am faced with the binary world, male and female. Not a day passes that I don't wonder if perhaps it would be easier to pick a side and just be, well one or the other. For now, I skate along the edge of male, and it works well enough. The wonderful USA does not recognize an intersex gender, so its one or the other for documentation no matter how poorly I fit into that category this decade. Because like anyone I change with time. When I was 10 years old, I looked more female than male. When I was 20 years old I was living as a young woman, because it was easier than trying to explain to people that I wasn't female. When I was 30 years old, I was living as a male, because I'd gained weight (my health was also critically challenged) and presenting as a male was easier.

To understand why I say this, you have to start with who I am:

Intersex person.
Klinefelter's Syndrome 47,XXY person.
A person that chooses to use estradiol (an estrogen) rather than testosterone.
Someone that has read countless papers, documents, concepts, biology texts, etc... and come to a conclusion that these doctor's are on the wrong track.
I have both male and female sex markers.
If I wear loose clothing, people pick a sex based on my voice high for female, low for male. But if I wear tight clothing, form fitting, they usually pick female regardless of vocal range.
At one time I had osteoporosis.
I still have dyslexia, that never really goes away.
I naturally have less testosterone (4% of scale), and more estradiol (20% of scale or more).
Gender identity disorder, oops, sorry I'm intersex I can't have a gender identity disorder because I'm an intersex person this doesn't really apply. Ergo I'm simply confused, or perhaps you are confused. Deal with it.

In the group of people that have XXY, that is 47 chromosomes, where a "normal" person only has 46 and is either 46,XX or 46,XY; There are people whom identify with the gender of neither, both, male and female. In the United States law only recognizes male and female, the gender binary, so we all have been assigned to one side or the other. The United States is one of the least progressive countries in the world in regards of gender, being phobic of just about anything related sexuality and gender. This creates a number of problems for people like myself, whom can be either sex.

I'm personally concerned about my own medical health. That is really all we have in this world, our own personal health. And like most intersex people, I have my own set of challenges. For example, I have a nearly shut down endocrine system, I do not naturally produce progesterone, or cortisol for that matter. This is similar to the condition Congenital Adrenal Hyperplasia, but because I have Klinefelter's Syndrome the other condition does not apply. So say the doctors.

The challenges I've faced, or continue to face:

Osteoporosis: This is where the bone density tests put you in the -3 medians category. They claim that this can effect anyone over the age of 18 years old, but generally only affects people over the age of 70, whom are small, old women, whom smoke, don't eat balanced diets, and never get any exercise. At 35 years of age, tested on both male and female charts, I was told I'd better fix my life to try to fix this. What the doctors did not tell me is that osteoporosis is caused by a lack of estradiol (retains built bone), and progesterone (builds new bone). Whether you are male or female, this mechanism is clear. The human body needs estradiol (converted by aromatase in males, and made naturally in females) as well as progesterone (made naturally in males and females) in order to build new bone and retain the bone. In addition I needed to take alot more of calcium (primary building block of bone), vitamin D (used to convert calcium into bone), and other trace elements (thank you multi-vitamins).
Gender Identity Disorder: Okay so I don't qualify, for a long time I thought I did. In the American Psychological Association's Diagnostic and Statistics Manual, commonly called the DSM-IV, it is clearly stated that intersex people cannot have the condition known as Gender Identity Disorder. Only males and females can have this condition, which I'm not. Many people are pushing the idea that 47,XXY is male only, which is nice, but not so helpful. Especially to people like me whom identify as Just Not Male. I don't have to be female or male, but I run into trouble trying to be male. You see, the problem is that I do not understand men. Talking to males is difficult because I don't use the right forms of obedience or whatever it is that allows them to trust one another. Being perpetually ignored by people, or considered someone they can't "trust" simply because I don't understand the mechanics of male relationships should be reason enough to allow space for us "not so masculine people" to be "Not Male". I'm sure some XXY people really want to be males, I wish them the best at it.
Sexual Identity: This is a hard one... I'm a somewhat effeminate person whom can be either an effeminate possibly gay male or a butch lesbian female based almost entirely on the pitch of my voice. Silly I suppose but its one note difference, and people make assumptions about me based on their own views. I grew up homophobic to males, too many of those males tried to be a bit too close (mix that up with martial arts and we have a recipe for disaster). In my 20's I tried to be a woman, and like guys. That didn't work too well, though I did meet one boy... and thats a story for another time. Then you have to understand that the whole concept of male sex with a girl, the activity of the male, is a turn off to me. I can go through the motions but its cold, repetitious, and boring. So what does that leave me, interested in girls but not as a male. Lesbian? Currently living on the male side of the gender binary, butch lesbian.. ? Go figure...
Physical Shape: Hi guys, yes I have breasts, and no I'm not a girl, but I'm not a guy either, so deal with it. The hour glass shape of my 20's was really hard to suppress, eventually I got tired of explaining I wasn't female to people. If I'd been paying more attention back then, I probably would have chosen to be a transsexual and taken the Male to Female route. Many people with XXY choose the Female to Male route and take large doses of testosterone. Others are like me, and have breasts; Those whom pick Female to Male have to have their breasts removed. I chose to avoid that question, I mean, seriously who would want to have their breasts CUT OFF? Are they crazy? The intersex people whom identify as male probably don't think its crazy to have their breasts removed, but I don't identify as male, so why would I do that? Much less take testosterone....

Its been several years now since I was diagnosed, originally seeking answers to extreme fatigue, bone/muscle pain, gender identity crisis, etc... I no longer have any of those problems. The solution that I found was estradiol, progesterone, and vitamins. Understanding why I experienced these problems and addressing the problem not its symptoms have enabled me to live a better, more healthy life. By stepping out, and I do in my personal world with people that I know and work with daily, I am working to make a change. One small piece at a time. For now, this is enough.

Onnineko