Monday, August 9, 2010
de Ronde W, de Haan A, Drent ML.
Department of Endocrinology, Vrije Universiteit Medical Center, Amsterdam, The Netherlands. email@example.com
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.
Saturday, July 31, 2010
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.
Wednesday, July 28, 2010
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 ?
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.
Sunday, July 11, 2010
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.
Saturday, June 19, 2010
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.
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.
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?
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
Title: Androgen Insensitivity Syndrome and Klinefelter's Syndrome
Authors: Milton Diamond, PhD and Linda Ann Watson, MEdGender 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 . Some people who have KS consider themselves to be transgendered , others considered themselves to be intersexed , 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 .
Wyler et al  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  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  or that the prevalence was not any different from that seen in the general population ._______________________________________________________________
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.
Friday, May 14, 2010
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.