Author Topic: Question about klinefelters syndrome....  (Read 8646 times)

Offline ~Mr.x~

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Hey :)

I'm a long time reader of these boards, It has been a great source of information for me and i believe its time to make my first post lol  ;), I was just reading through and found information about klinefelters syndrome...

I was pretty shocked to read that i have a few of the symptoms  :-\

I was just wondering if im over reacting or if I do actually have it...

here are the symptoms:
http://www.wrongdiagnosis.com/k/klinefelter_syndrome/symptoms.htm

# Enlarged male breasts - only severe in about 10% of cases - Yes i do have gyne
# Sparse facial hair - full beard
# Sparse body hair - normal chest hair, and on arms and legs
# Small testes - normal size (2.5 inches)
# Inability to produce sperm - unsure? this would require a fertility test?
# Male infertility - unsure
# Rounded body type - slight, but due to being overweight as far as i know?
# Overweight - somewhat more likely than in non-XXY males. - yes
# Tallness - more likely to be taller than non-XXY males. - 6 feet/183 - not extremely tall?
# Thinness - nope
# Normal intelligence - yes, I've always done reasonably well academically
# Language impairment - no
# Delayed talking - no, started speaking at a normal age according to my parents, before age 1.
# Difficulty reading - no
# Difficulty writing - none at all
# Normal sexuality - no increase in homosexuality. - Normal sexuality
# Abnormal testicle development - no
# Low testosterone levels - unsure
# Male breast development - yes
# Reduced facial hair - no, full beard
# Reduced body hair - no, hairy by most standards lol
# Long arms and legs - slightly
# Infertility - unsure
# Learning disabilities - none
# Speech difficulty - not really
# Language development problems - well I never liked learning languages in school, but I wouldn't say I had problems learning them
# Unassertive - not really
# Quiet - not really
# Sensitive - Not abnormally sensitive..
#Lack of muscle - relatively well built...

So my main symptoms would by gyne, I am about the same height as my father, ground to hip is about 95cm and total height is 183 cm, so i don't think i have abnormally long legs?

The main symptom Ive seen in people with xxy is a lack of facial and body hair, so does the fact I have a full beard and normal body hair mean I most likely dont have it?


Thanks in advance for any replies, I really hope i don't have it  :'(

Offline Jay999

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I believe XXY males are very rare, if it bothers you go to the doc and get tested.

Offline ~Mr.x~

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Thanks for the reply  :),
yeah I may have to go to get tested,
but id rather get some opinions to see if I'm over reacting first  :-\

Offline Dr. Elliot Jacobs

  • Elliot W. Jacobs, MD, FACS
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The only way to know definitely is to have genetic testing -- no point by point physical analysis will help.

It is a rare syndrome but to quell your fears, then have the test.  No point in worrying unnecessarily.

Dr Jacobs
Dr. Jacobs 
Certified: American Board of Plastic Surgery
Fellow: American College of Surgeons
Practice sub-specialty in Gynecomastia Surgery
4800 North Federal Highway
Boca Raton, Florida 33431
561  367 9101
Email:  dr.j@elliotjacobsmd.com
Website:  http://www.gynecomastiasurgery.com
Website:  http://www.gynecomastianewyork.c

DrBermant

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Hey :)

I'm a long time reader of these boards, It has been a great source of information for me and i believe its time to make my first post lol  ;), I was just reading through and found information about klinefelters syndrome...

I was pretty shocked to read that i have a few of the symptoms  :-\

I was just wondering if im over reacting or if I do actually have it...

here are the symptoms:
http://www.wrongdiagnosis.com/k/klinefelter_syndrome/symptoms.htm

# Enlarged male breasts - only severe in about 10% of cases - Yes i do have gyne
# Sparse facial hair - full beard
# Sparse body hair - normal chest hair, and on arms and legs
# Small testes - normal size (2.5 inches)
# Inability to produce sperm - unsure? this would require a fertility test?
# Male infertility - unsure
# Rounded body type - slight, but due to being overweight as far as i know?
# Overweight - somewhat more likely than in non-XXY males. - yes
# Tallness - more likely to be taller than non-XXY males. - 6 feet/183 - not extremely tall?
# Thinness - nope
# Normal intelligence - yes, I've always done reasonably well academically
# Language impairment - no
# Delayed talking - no, started speaking at a normal age according to my parents, before age 1.
# Difficulty reading - no
# Difficulty writing - none at all
# Normal sexuality - no increase in homosexuality. - Normal sexuality
# Abnormal testicle development - no
# Low testosterone levels - unsure
# Male breast development - yes
# Reduced facial hair - no, full beard
# Reduced body hair - no, hairy by most standards lol
# Long arms and legs - slightly
# Infertility - unsure
# Learning disabilities - none
# Speech difficulty - not really
# Language development problems - well I never liked learning languages in school, but I wouldn't say I had problems learning them
# Unassertive - not really
# Quiet - not really
# Sensitive - Not abnormally sensitive..
#Lack of muscle - relatively well built...

So my main symptoms would by gyne, I am about the same height as my father, ground to hip is about 95cm and total height is 183 cm, so i don't think i have abnormally long legs?

The main symptom Ive seen in people with xxy is a lack of facial and body hair, so does the fact I have a full beard and normal body hair mean I most likely dont have it?


Thanks in advance for any replies, I really hope i don't have it  :'(

Actually Klinefelter's Syndrome is the most common genetic disorder occurring in 1 in every 500 to 1000 male births and I have seen many patients with this problem.  I have never seen a person with this problem that did not have small testicles, that is why I include the testicle exam for my gynecomastia patients.  It is a great screening technique coupled with observation and taking a good history.  Patients normally have many different components of the symptom complex outlined on my pages.  When I find an undiagnosed patient, I refer them to an Endocrinologist who is the first step towards a diagnosis.  However, Klinefelter's Syndrome is but one of many different Causes of Gynecomastia

Hope this helps,

Michael Bermant, MD
Learn More About Gynecomastia and Male Breast Reduction


Offline ~Mr.x~

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Thank you for your reply Dr. Bermant,

Can you please define what you would consider a normal size to be?

According to urologists, the testicles of a normal adult may range from 1.57 inches (four centimeters) to 2.75 inches (seven centimeters).
Would you say that is about right? ^^^

In your examination for klienfelters, what are the other main symptoms you would be looking for?
And judging by the information i gave in my first post, would you say that it is likely that I do/do not have it?


Thank you very much for the links and information :)

Offline Grandpa Bambu

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  • 31 Year Gynecomastia Victim...
Judging by the information i gave in my first post, would you say that it is likely that I do/do not have it?

You answered 'no' to most of the KS characteristics, so why then, are you concerned that you might have the syndrome? Even if you did have the syndrome, knowing, will not change who you are....  ;)

I answered 'yes' to most of the the characteristics, and considered getting genetic testing to find out if I have KS. However, after thinking about it for a while, I came to the conclusion that knowing, one way or the other, would not change who/what I am. So I said fakit... not gonna waste an Endo's valuable time...  ;) 

P.S....  My Step-Son and Son-In-Law have KS.

GB
Surgery: February 16, 2005. - Toronto, Ontario Canada.
Surgeon: Dr. John Craig Fielding   M.D.   F.R.C.S. (C) (416.766.8890)
Pre-Op/Post-Op Pics

Offline ~Mr.x~

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You answered 'no' to most of the KS characteristics, so why then, are you concerned that you might have the syndrome? Even if you did have the syndrome, knowing, will not change who you are....  ;)

I answered 'yes' to most of the the characteristics, and considered getting genetic testing to find out if I have KS. However, after thinking about it for a while, I came to the conclusion that knowing, one way or the other, would not change who/what I am. So I said fakit... not gonna waste an Endo's valuable time...  ;) 

P.S....  My Step-Son and Son-In-Law have KS.

GB

Well I do have some of the main symptoms, I was just basically wondering if having normal body hair and normal testicle size would rule me our of having the syndrome? I'm only 17 right now and the possibility of not being unable to have children when I'm older is quite worrying... so in that sense it would change my future...

I understand your point of view,
but having to live life with gyne has been terrible enough... and hopefully I will be having surgery in the next year...
But tbh if my gyne is KS related, getting rid of it would be a hollow victory if i knew the other symptoms could not be fixed, and I could never have a family of my own.

Gyne has torn my life apart since i was about 12 years old,
But if i was given the option between living with if for the rest of my life, or raising my own family, I already know what I would choose....

So you can understand why I am looking to find out if my situation is worse than I thought....

I would go to a doctor about it, but Ive had bad experiences with my country's health system, and I wouldn't be surprised if 90% of doctors have never even heard of KS...
 

Offline Dr. Elliot Jacobs

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Perhaps this story can help.

Obviously, we don't know if you have KS or not -- the only definitive test is a genetic test.

However, within the past six months, I performed gynecomastia surgery on a KS patient.  His pregannt wife accompanied him to the operation!!!  They knew he had KS and had the baby via artificial insemination.  When I last saw him, he was a happy father -- and in fact brought in his baby to show to the office staff.  It was every bit "his child."

Dr Jacobs

DrBermant

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Yes, there can be immense joy for the Klinefelter patient with children.  Most of the Klinefelter patients I have worked with that had children have either married someone who already had children, other adopt.  The real miracle is the individual who has gone through the extremely difficult times needed to get their own.  Since the normal Klinefelter patient has no sperm in their ejaculate, to have your own child requires either a testicular biopsy or opening the testicle and looking for the sperm as done in this article:

http://www.urotoday.com/browse_categories/male_infertility/sperm_extraction_aids_fertility_in_klinefelter_syndrome.html

It can be a very difficult and expensive road for many requiring more than one attempt.  The joy I have seen is amazing.

Hope this helps,

Michael Bermant, MD
Learn More About Klinefelter's Syndrome.

Offline ~Mr.x~

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Thank you for this information,

So In the event that i did have KS,
would I be right in saying that the sooner I am diagnosed the better?
The longer I wait to be diagnosed the less likely I am to have children?
and if i was diagnosed asap Cryopreservation might be an option?


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