Monday, September 19, 2011

I reject the Klinefelter's Diagnosis

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 camera.

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

Thursday, June 23, 2011

Endocrine Anomalies and the Function of the Liver

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

Wednesday, February 2, 2011

The Mayo Clinic - and - Onnineko

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

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?