Bill Bucar from Hamilton Ontario, Canada produced two papers on Klinefelter Syndrone and these are presented here. 

The first one took Bill 3.5 years to research.  An undertaking he volunteered for because of inadequate medical care and lack of

information from the medical professionals he was dealing with.  The second one took him 4 years to complete.

Bills' survey and the 1998 paper is presented here by permission.

The folling is from Bill

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My name is Bill Bucar and I live in Hamilton, Ontario, Canada.  During a near fatal M.I., I was diagnosed with a possibillity

of Klinefelter Syndrome, by a female Cardiologist.  She ordered a "buccal smear" and the results where "a possibillity of

Klinefelter Syndrome"

Unfortunately, the Cardiologist quit the hospital where she was working, before I ever got an opportunity to talk with her.  2

years later, I had another M.I. and the cardiologist of the day told me that I had Klinefelter Syndrome.  When I asked what

that was, he told me to go see my General Practioner doctor, which I did and that idiot wrote it on a piece of paper and sent

me to a library.

I didn't get much information from the library, so I purchased a modem for my computer and I began searching.  It took me

3.5 years to reasearch this nomally, then, when I saw my G.P. again, I made him an offer that he couldn't refuse:)  I told him

that he would have to do what I instructed, or he would be digging ditches for a living.  Of course, he followed my instructions

and he ordered a karyotype, which came back as 47,XXY.

As a result of my research, I wrote the "Klinefelter Syndrome FAQ", then went on to do the survey. The survey took me 4

years to complete and is the only one of it's kind in cyberspace.

I'm now 63 years young, on high doses of testosterone by injection and my health has improved immensely.  I also moved

to this city, where there is located a medical university and my present doctors are excellant.

I'm on a disabillity pension as I cannot handle the stress of my job.  I was working as an Environmental Engineering

Technologist and had the pleasure of working in other countries besides Canada.

To all who read this:  Don't treat your doctor like a god.  He/she isn't that for sure.  Go after him/her and demand treatment. 

After all, you are paying for the survice and try to get the best service you can get:)

                 Bill Bucar..........

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KLINEFELTER SYNDROME

WHAT IS KLINEFELTER SYNDROME?

It is a genetic disorder, which occurs at conception.  It is only found in male births and the chromosomes in the sex line have at

least one extra "X".  To date, it is unknown whether the extra "X" comes from the mother or the father, or from both parents.  In

the medical community, it is more commonly known as 47,XXY, but there are many variants to this genetic structure, such as

XXXY......XXXXY.......XXYY......XX/XXY.....XY/XXXY.....XX/XXY......XY/XXY.....XXY/XXXXY....XxY/Xx/XY......XXXYY.....XXY/XY......

XXY/XYY......XXX/XXXY......XXXXY/XXXXXY/XXX.......XX(Y)......XXXXY/XXX.....XO/XY/XXY......YO/XY/XXY......

XO/XX/XY/XXY/XXXY......XY/XXY/XXxY......XY/XXY/XXXY.......XX/XxY......XX/XY/XXY

WHAT ARE THE MOST COMMON SYMPTOMS?

Gynecomastia, an abnormal enlargement of one or both breasts; hard tiny testes that never grow; infertility; incomplete

masculine body build; height generally 6 feet or more; may not be particularly athletic or coordinated.  The penis is usually of

average length.  There may be a decreased growth of facial and body hair and he will have long legs, longer than normal arms

and can exhibit poor social skills and poor social adaption.

OTHER POSSIBLE SYMPTOMS

Increased risk for speech and language problems

Preference for quiet games

Introversion

Frequently shy

Hand tremors

Frustration based outbursts

Difficulties in concentration

Restless sleep patterns

Lower level of activity

Difficult to awaken in the mornings

Lower degree of self esteem

A  form of dyslexia

To some degree, eunochoidal stature......arm span is usually 2 inches

longer than height.

Without hormone treatment, a better opportunity to develop cardio-vascular

arteriosclorosi (hardening of the arteries)

The inability to maintain long term friends

Attention Deficit Disorder/Impulsivity, to some degree

Rounded shoulders and rounded hips

Life-long soft skin

MORE POSSIBLE SYMPTOMS, LATER IN LIFE (AS AN ADULT)

Aggression

Little muscle strength....lack of upper body strength

Obesity, with a possibility of high cholesterol and resulting

atherosclorosis

Risk of osteoporsis

Risk of breast cancer

Risk of autoimmune disorders such as type 2 diabetes, autoimmune thyroditis

and/or lupus erthematosus

Inner anger, requiring anger management

Loss of libido with resulting erectile dysfunction

Myocardial Infarction after the age of 30 is common

IS THERE A CURE FOR KLINEFELTERS'?

NO

IS THERE A WAY TO CONTROL THE EFFECTS OF KLINEFELTERS'?

Yes, with Hormone Therapy (HT).  Usually with testosterone, but sometimes with estrogen, as when the person identifies as

female or intersexual.

Testosterone can be administered by injection into the largest body muscle mass (usually the thighs or buttocks) on a regular

basis.  Check with an endocrinologist who has experience with genetics or andrology.  In some countries, an androderm patch

is available, as well as testosterone implants, andriol tablets and/or testo gel.  It is a good idea to stay away from

"methyltestosterone tablets" as 80% of this medication is metabolized by the liver and is dangerous to the liver.

WHY IS TESTOSTERONE REQUIRED?

When a male reaches puberty, between the ages of 11 and 13, changes begin to occur inside as well as outside of his body. 

Testosterone is the primary hormone responsible for these changes.  A boy will begin to notice a growth in the size of his

penis and scrotum.  Inside his body, the prostate and seminal vesicles begin to develop.  The larynx (voice box) enlarges and

the vocal cords increase in length and thickness, resulting in deepening of his voice.  Growth of pubic hair, facial hair, hair on

his arms and legs and armpits will occur.  The shoulders broaden and muscles begin to grow.  Sebaceous glands found under

the skin begin to produce more oily secretions that can lead to acne.  In boys with Klinefelters', these changes do not always

occur due to an absence or deficiancy of testosterone in their body.  Before puberty, both boys and girls have low levels of

testosterone.  When a boy reaches puberty, the level of testosterone begins to increase gradually, but not so with Klinefelter

boys.  Many Klinefelter males require life-long testosterone treatment.

ARE PERSONS WITH KLINEFELTERS' AT A GREATER CHANCE OF BEING BORN, NON-HETEROSEXUAL?

There have been many reports of Klinefelter males who are bisexual, homosexual or transgendered.  The proportion of

Klinefelter males that exhibit these sexual orientations is unknown.  Some believe that it is not greater than in the general

population and others believe that it is greater than in the general population.  The biggest problem is that the general

population do not know what the percentage is of homosexuals, bisexual or transgendered.

WHAT IS HAPPENING IN MY BODY THAT IS DIFFERENT?

To answer this, I should explain how testosterone is normally released within the male body.  The hypothalamus, an organ

found in the brain, regulates our bodies' (both male and female)by releasing different hormones.  When boys and girls reach

puberty, the hypothalamus begins to release gonadtropin-releasing hormones (GnRH) or sometimes called "Lutenizing

releasing hormone" (LHRH) into the body.  The gonadtropin-releasing hormone travels to the anterior pituitary gland, follicular

stimulating hormone (FSH) and Lutenizing hormone (LH).  These 2 hormones, FSH and LH leave the brain and enter the blood

stream.  LH and FSH find their respective receptors and they form a bond with the receptor, similar to a key fitting into a lock.

LH specific receptors are called Leydig cells.  LH is the key that fits into the lock and stimulates the production of testosterone

...........the changes associated with puberty can begin.

Testosterone has 2 important jobs: The first is to stimulate changes in the body.  Secondly, testosterone ascts directly on the

hypothalamus and anterior pituitary gland to stop the production of GnRH, LH and FSH.  When the level of testosterone drops

again, the hypothalamus will sense the drop and will begin producing GnRH.  the whole cycle will begin again.  FSH works in

a different manner.  FSH goes to the testes also, but the FSH meets with a different cell receptor.  These cells are called

Sertoli cells.  In males without Klinefelters', the Sertoli cells cause the production of sperm after being stimulated by the FSH. 

In Klinefelter males, the Sertoli cells are unable to produce sperm.

Klinefelter males are able to release GnRH from the hypothalamus and LH and FSH from the anterior pituitary gland, but in

Klinefelter males, there is no production or release of testosterone when LH combines with the Leydig cells.  If testosterone

is not produced, puberty will not occur.  Until the hypothalamus senses that there is circulating testosterone in the body, the

hypothalamus will continue to send out GnRH.  Without testosterone, the anterior pituitary gland will also keep releasing LH

and FSH.  These elevated levels of LH and FSH are responsible for the development of female characteristics.  Klinefelter

males often develop breast tissue due to high levels of LH and FSH as well as other feminine characteristics.  One of the

purely physical advantages of beginning testosterone treatment around the ages of 11 to 13 is to lessen the amount of

feminization of a male body.

ARE THERE ANY EFFECTS WHICH OCCUR AS A RESULT OF HORMONE TREATMENT?

Remember that you are simply replacing a hormone in your body that is supposed to be there.  You can expect to experience

the changes that would occur in a boy experiencing puberty.  You will probably experience some increased frequency of penile

erections.

This is very common in boys who do not require hormone treatment.  Other changes that may occur are acne, weight gain or

loss, increased muscle mass and an increase in hair distribution.  You and your endocrinologist must work together to

determine the dosage of testo that works best for you.  Everyone on hormone treatment requires a different dosage and you

cannot compare your dosage to that of your Klinefelter friends.  One very important thing you must understand:  there is no way

that a doctor can tell you how much testosterone you require.  Only you can determine this, based on how you feel.  A lot of

doctors will administer testosterone based on that of an XY male.  This is definitely incorrect.

Males with Klinefelters' need more testosterone in their system than an XY male.  There is absolutely no comparison between

an XY male and a XXY male/or variant.

ARE THERE SIDE EFFECTS TO HORMONE TREATMENT?

In young men with Klinefleters' there is a greater chance of developing testicular cancer, up to the age of 30, especially men

between the ages of 15 to 20, as most testicular cancers in 46,XY males occur before the age of 30.

Due to testosterone treatment, there is a greater chance of developing Benign Prostatic Hyperplasia (BPH), a non-cancerous

form of prostate problems, earlier in life.  Most XY men develop this illness in the age range of 60 to 80 and simple surgery is

required to correct this problem.

Elevation of blood pressure

Increased bad cholesterol

Decreased good cholesterol

Fluid retention

HOW DO I DETERMINE THE RESULTS OF HORMONE TREATMENT?

On a quarterly basis, have your doctor check the following blood levels:

Total cholesterol, HDL & LDL, FSH and LH, Total Testosterone and Free

Testosterone.

How you feel, Improvement in sex life, How well you get on with other people, generally, Bone density, Overall general health,

Level of fatigue, if any, Mood swings, if any, Hair growth and distribution, overall.

WHAT SHOULD THE NORMAL "FREE TESTOSTERONE" LEVEL BE, FOR THE AVERAGE MAN WITHOUT

KLINEFELTERS'?

9 to 30 ng/dl

IS EVERY MEDICAL PROBLEM I HAVE, RELATED TO KLINEFELTERS'?

No

A QUESTION TO PONDER:  THIS IS MY PERSONAL OPPINION.

Remember, that not all people with Klinefelter Syndrome are the same.

Am I a male or am I a female?  I am neither.  I am a member of the third gender in the human race.

This gender is called "Intersexual"

Researched and written by Bill Bucar, Hamilton Ontario, Canada.........1998

______________________________________________________________

           KLINEFELTER SYNDROME, GENERAL INTEREST SURVEY

Information collected from people in several countries and report written by Bill Bucar, Hamilton, Ontario, Canada.  2

previous surveys have now been combined, Aug. 18, 2000

Number of people responding to my questionnaire:  66

Average age of respondents: 40

KARYOTYPE OF RESPONDENTS:

47,XXY - 89.4%

46,XY/47,XXY - 6.7%

HORMONE THERAPY METHOD:

Patch - 20%

Injection - 42%

Andriol capsules - 6%

Implants - 4%

No HT - 22%

Estrogen cream - 6%

EDUCATION OF RESPONDENTS:

University graduate - 60%

High School grduate - 20%

Never finnished High School - 10%

Still in School - 10%

NATURE OF WORK OF RESPONDENTS:

Professional - 32%

Technology - 30%

Self Employed - 10%

Unemployed - 4%

Disability - 6%

Retired - 8%

SEXUAL ORIENTATION OF RESPONDENTS:

Non-adult - 4.5%

Heterosexual - 39.7%

Homosexual - 33%

Bisexual - 21.7%

Transexual - 6%

GENDER IDENTIFICATION OF RESPONDENTS:

Male - 84.8%

Female - 4.8%

Intersexual - 9.5%

Unsure - 3.2%

MORE COMMON SYMPTOMS OF RESPONDENTS:

Hypogonadal - 93.8%

Infertile - 100%

Gynecomastia - 46%

Height greater than 6' - 23%..........tallest - 6'7"..........shortest -5'2"

Obesity - 23.8%

Hand tremors - 6.3%

Difficulty in concentrating - 12.7%

Low self-esteem - 10.6%

Restless sleep patterns - 3%

Lower level of activity, No body strength - 13.6%

Dyslexia (mental) - 7.6%

Dyslexia ( physical) - 1.6%

Eunocoidal stature - 12.7%

Cardio-vascular problems - 7.9%

Attention Deficit disorder - 4.5%

Osteoporosis - 9.5%

Benign Prostatic Hyperplasia - 3%

Cholesterol problems - 4.8%

Depression - 7.9%

Sexual/gender confusion - 30.2%

DIFFERENT REASONS FOR DIAGNOSIS:

at age 48 - was complaining of a hernia, went to see a urologist, who ordered a

karyotype.

at age 52 - in emergancy during a near fatal myocardial infarction.

at age 40 - during a medical examination for a job.

at age 38 - failure to impregnate wife.

at age 55 - due to tiny testes.

at age 37 - urinary tract infection.

at age 47 - due to no strength, tiny penis and testes, and no interest in females.

at age 15 - trying to exclude Marfan Syndrome.

at age 49 - a new doctor giving a medical examination and noticed

differences from a typical male.

at age 32 - attempting to impregnate wife.

at age 64 - to correct breast development.

at age 21 - re-enlistment medical for Navy.

at age 19 - noted tiny testes during physical exam.

at age 49 - underdeveloped body, tiny testes, gynecomastia.

at age 17 - depression, anxiety over body shape, total confusion.

at age 29 - infertile.

at age 43 - could not impregnate wife .

at age 34 - testing for infertility.

at age 28 - investigating no testes growth.

at age 19 - investigating reason for undesended testes.

at age 62 - to confirm Klinefelter Syndrome.

at age 21 - Army doctor noticed tiny testes and small penis.

at age 17 - typical symptoms of Klinefelters'.

at age 15 - doctor noticed tiny testes.

at age 38 - due to severe reaction to testosterone.

at age 19 - very shy and low self esteem.

at age 20 - tiny testes and lack of facial hair.

at age 39 - low testo count.

at age 34 - dissolving of marriage.

at age 48 - gender dysphoria.

at age 15 - gynecomastia.

at age 19 - doctor was concerned about tiny testes.

at age 50 - depression.

at age   9 - undesended testes.

at age 28 - tiny testes.

at age 16 - gynecomastia, no muscle strength.

at age 16 - chest pains.

at age 31 - nervous breakdown.

at age 19 - criminal offenses, major mood swings and couldn't get along

with people.

at age 16 - one small teste.

at age 21 - attempting to have a vasectomy and blood test revealed XXY.

at age 26 - seeking information on weight gain and tiny testes.

at age 11 - having problems in school.

at age 31 - nervous breakdown.

at age 23 - ongoing depression.

at age 22 - was refused Armed forces entry, due to small testes and was

presumed homosexual.

at age 35 - due to pains in groin.

at age 20 - smallness of genitallia.

at age 20 - liver and kidney infection.

Between 16th and 20th week of gestation re: diagnosis of fetal abnormallities,

more commonly known as amniocentesis, boy is now 5 years old.

at age 17 - doctor commented on tiny testes.

at age 9 - multiple gross motor skills.

at age 40 - low sperm count.

END..............

Organisation Intersex International Bill Bucar

Paper and Survey