Friday, February 6, 2009

XXY: Memory is a function of estradiol

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...

Sunday, February 1, 2009

XXY is an Intersex Condition

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:
  1. Intersex person.
  2. Klinefelter's Syndrome 47,XXY person.
  3. A person that chooses to use estradiol (an estrogen) rather than testosterone.
  4. 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.
  5. I have both male and female sex markers.
  6. 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.
  7. At one time I had osteoporosis.
  8. I still have dyslexia, that never really goes away.
  9. I naturally have less testosterone (4% of scale), and more estradiol (20% of scale or more).
  10. 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:
  1. 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).
  2. 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.
  3. 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...
  4. 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.