Saturday, June 19, 2010

Its yet another working Saturday...

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

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.

Friday, June 18, 2010

XXY: Medical Establishment is playing God again...

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