When is 47,XXY not Klinefelter's Syndrome ?

This is another good reason why Klinefelter's syndrome (the symptoms of disease) should be applied only to those who actually have it and not to those who have the XXY karyotype.

You can search PubMed right now and find articles about men supposedly with KS, with normal levels of LH and FSH, indeed my own level of LH and FSH were 'within the normal range for males' when I was first diagnosed with Klinefelter's syndrome, in 1976. There were other features I had that were also undeniably true, like small firm testes, asthenic build (indicating a poor response to endogenous testosterone) and disproportionate leg, arm, and body ratios. How can it then be that my LH and FSH were 'within the normal range for males?' Even my testosterone was 'within the normal range for males.'

How I felt about myself was terrible. But I didn't get therapy until my FSH, the first indicator to show, became elevated beyond the normal range for males. That was in September 1977, more than a year after I was found to be XXY.

It's all academic now, it's just a topic to while the time away with. The reality ids the medical profession is too damn lazy to do the required medical checks on boys in puberty and men, therefor those of us diagnosed in our teens are indeed very lucky.

I've had to adjust my point of view and concede that your opinion re XXY v KS probably has some grounding though the difficulty is in classification which brings me back to it being a spectrum disorder rather than a template syndrome. Sadly even now very few articles point out that the original phenotype or so called classical phenotype probably accounts for why so few have been diagnosed and highlight that not all of the expected symptoms will be evident in each case.

There is an article on Klinefelter's Syndrome; XXY males at u s p h a r m a c i s t dot com which kind of meets you half way in stating that the syndrome aspect has lost favour in published articles because not all grow to expect the symptoms with age... I have a lot of difficulty with that quote about babies not being born XXY as in Denmark terminations frequently happen with predicted XXY's so the extra X has to be there irrespective of what symptoms later develop.

Or am I getting confused with KS?

Well I sent a reply, it just disappeared, any reason why?

Hi Sunrisen,

You can post links and I will approve them as long as they are relevant to the discussion and not advertising etc. Is this the correct url - http://www.uspharmacist.com/content/d/feature/i/1120/c/21150/ ?

Hi XXY - there should be no reason for your post to disappear, there aren't any known issues I am aware of like a short timeout or similar. I will check with the developers if there is any reason this may have happened. All I can suggest is if you are posting a long reply - copy it to your clipboard before clicking Post reply "just in case".

Regards,

Alan

Thank you Alan for your advice.

From the link "The most common form of congenital primary hypogonadism is Klinefelter’s syndrome"

This statement is in fact, a nonsense. Klinefelter's syndrome is the symptoms of primary hypogonadism, the hypogonadism is caused by Seminiferous Tubule Dysgenesis, and that is caused by additional X genetic material in the testes specifically of post pubertal males. It is quite conceivable that a man can have additional X genetic material in his blood, but have none in his testes. Such a man will be described as having Klinefelter's syndrome even though he has NONE of the symptoms.

You can find reference to that statement in this report by Dr S Ratcliffe, reference 25:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1717826/

This link goes to a page where you can access the PDF file of: "Long term outcome in children of sex chromosome abnormalities" and reference 25 is about an XXY man living in Israel with normally sized and functioning testes, which is titled 'Paternity in Klinefelter's syndrome' and obviously he doesn't have Klinefelter's syndrome, he is an XXY man, and that's all.

Just ask yourself, what symptoms of disease are XYY males known for? What symptoms of disease are XXX females known for? So why should XXY males be known as symptoms of disease automatically, even when they don't have the symptoms of disease?

This is what Dr Klinefelter described, this form of hypogonadism is what became known as Klinefelter's syndrome, over time, then in the blink of the effectively the medical profession switched KS to XXY and XXXY to KS:

http://jcem.endojournals.org/content/18/12/1359

And when you read it you'll see that KS was proven by testicular biopsy, not by karyotype, as in 1958 when this report was received karyotypes had not been invented/discovered.

HI GUYS! IVE READ ALL YOUR POSTS AND ITS COMFORTING TO KNOW THAT THERE IS MORE MEN OUT THERE THAT ARE SUFFERING WITH SIMILAR EFFECTS AS I AM AND HAVE DONE SO. THX TO XXYGUY FOR THE VAST KNOWLEDGE HE HAS GAINED ON THE SUBJECT. ALSO I AGREE WITH HIM FOR THE MAN WHO WENT TO 2 GPS , HE SHOULD DEFINITELY ASK FOR A REFERRAL TO HIS LOCAL ENDOCRINOLOGIST WHICH WILL LIKELY BE AT THE HOSPITAL? I WAS DIAGNOSED WHEN 17 BY ACCIDENT WHEN HAVING A MEDICAL AT THE HOSPITAL BECAUSE MY GP RECORDS HAD NOT REACHED OUR NEW SURGERY AFTER MOVING TO SCOTLAND. AT THE HOSPITAL THE DOCTOR HAD A GROUP OF STUDENT DOCS WITH HIM AND ONE OF THEM POINTED OUT THAT MY BALLS WERE RATHER SMALL FOR A 17YR OLD AND I HARDLY HAD ANY FACIAL/BODY HAIR,VERY SKINNY, INTROVERT SHOULDERS+SMALL PENIS.

(AT19 I TOOK A NERVOUS BREAKDOWN. @ 21 ZERO SPERM COUNT+CLEAR FLUID EJACULATIONS)

AFTER BLOODS TAKEN THEY TOLD ME I HAD KS AND THAT I WOULD DEVELOP OSTEOPOROSIS AT AN EARLY AGE, POSSIBLE OTHER ORGAN DIS FIGURATIONS,INFERTILE AND BE ON TESTOSTERONE REPLACEMENT THERAPY FOR LIFE.

I AM 43 NOW NOT MUCH MUSCLE, LOADS OF HAIR EVERYWHERE EXCEPT HEAD WHERE ITS THINNING, IVE MANAGE TO DO SELF MASSAGE+GENTLE STRETCHING OVER THE YEARS AND INCREASED THE LENGTH+THICKNESS OF MY PENIS AT LEAST 3 TIMES MORE THAN IT WAS, CANT BUDGE THE TUMMY, LOST ALL THE FAT ON MY HIPS WITH ACTIVE SEX LIFE OVER THE YEARS DOWN FROM 42"TO 37".ULTRASOUND LAST YEAR CONFIRMED MY BALLS ARE VERYX3 TINY!WHEN I EJACULATE THE FLUID IS THICKER AND BITS FLOAT IN THE WC AFTER FLUSHING.I WONDER IF I SHOULD GO FOR SPERM COUNT? WENT TO SEE UROLOGY SPECIALIST TO ASK IF I CAN GET TESTICULAR INPLANTS ON NHS? I CAN, COULD CAUSE INFECTIONS AND LOSS OF LABIDO IF IT GOES WRONG, AND THEY WOULD REMOVE THE 2 TINY ONES THAT I CANT EVEN FIND SOMETIMES AS THEY GO INTO BODY!!

GETTING SOME COUNSELLING FOR IT NOW =ONLY3 MEN KNOW IVE BEEN SUFFERING WITH MY SELF ESTEEM AND IDENTITY AS A WHOLE MAN COZ IME MOST OF THE TIME LOOKING AT MENS CROTCHES TO SEE HOW MUCH OF A BUMP THEY HAVE ? I WENT THROUGH THE WHOLE GAY THING, BUT I KNOW I AM STRAIGHT NOW AS I LIKE WOMEN WHEN HAVING SEX,

Hello JatUK, taking testosterone won't make you fertile. If you did have any sperm in your testes taking testosterone would stop that limited production. That you had a zero sperm count when you were 21 suggests to me that you won't have any sperm in your testes either, not now anyway. Maybe back when you were 21 you might have had? Only a biopsy of your testes will be able to confirm if you do or do not.

I don't know what can go wrong with testicular prostheses, they are inert, the body doesn't notice them. And why libido would change I have no idea? But if that's the advice you've received whoever told must have their reasons.

Go to Vimeo, that a video hosting site, and check out Graeme-XXY that's my account. If you want to see what I look like?

THX FOR YOUR REPLY, IAM GETTING SOME COUNSELLING AND WORKING OUT WHAT QUESTIONS I WANT TO ASK THE UROLOGIST WHEN I GO BACK2THE CLINIC END FEB? IS THERE ANYTHING ELSE YOU SUGGEST I SHOULD ASK HIM? ITS ALL SO DAUNTING AND QUITE FRIGHTENING TO BE HONEST AS I DONT KNOW IF IT WILL ELEVATE THE FEELINGS I HAVE OF NOT BEING WHOLE/ NOT FITTING IN AND HAVE TESTICLES LIKE MOST MEN. ALMOST ALL THE PARTNERS IVE HAD AND SLEPT WITH GO FOR MY TESTICLES WHEN PLAYING WITH MY PENIS AND ITS ALWAYS THAT DEFLATED BIG SIGH / GRUNT THAT TOTALLY KILLS THE MOMENT!! CAN YOU RELATE TO THAT IN ANY WAY GUY?

Hi, you're seeing a Urologist, that's interesting. I've been seeing the same Endocrinologist since I was 17, who's been treating me since I was 18. I have artificial balls, it's no secret Alan, Alan is the Moderator here. I had the biggest pair in the catalog fitted second time round. The first time I had them done the surgeon looked at my genital size and inserted solid silicone balls that matched the rest of me. However young men don't have balls that are relative in size, they have big balls! And solid silicone might be cheaper but they're nowhere close to realistic. The prosthetic testes I have are gel filled, silicone, and feel just like real balls, and even today all these years later, I much prefer them over my natural defunct testes, that were finally removed after I was married and got my wife's consent. Before I was married no surgeon would agree to remove them in New Zealand. Even gonads that don't function are still reproductive organs and getting sterilised, even though I was already sterile, is impossible without a spouse's consent. So unmarried people are at a major disadvantage here!

So you can start with that question, why type of prostheses are they planning to fit? Removing the gonads is painful, just like being repeatedly kicked in the balls, that's what I felt like anyway. So you might like reconsider having them removed? Remember it's not just the testes themselves that will be taken, but the vas deferens also, and everything attached. That's the cord that carries sperm (if there were any) to the urethra. Oh don't worry, you do get to keep your prostate! What type of pain relief are they offering on the NHS, is another good question. I suggest Morphine, but I am just a patient, not a doctor.

I always found myself the be very sensitive in my scrotum, even before I was diagnosed, so I don't think it was psychosomatic, I think I really was very sensitive. I couldn't stand touching my balls myself let alone letting anybody else touch them, so being XXY was a major problem as all my doctors until recently has wanted a squeeze, they call it 'palpation' I call it 'crushing!' Sexual partners also like to play with them, which was just not enjoyable at all. These days though I have no problem at all. Prosthetic testes feel no pain, they're wonderful. Every now and then I do feel a tingling of loss because I'm XXY, but I try not to dwell on on all that much, as there's nothing I can do about it, well nothing more at least. Eventually I got to the stage of accepting, even if liking is always well out of the question.

" IVE MANAGE TO DO SELF MASSAGE+GENTLE STRETCHING OVER THE YEARS AND INCREASED THE LENGTH+THICKNESS OF MY PENIS AT LEAST 3 TIMES MORE THAN IT WAS,"

Yes, I don't actually agree that's possible, I believe it more likely your penis responding to testosterone, as that is the response to testosterone of every other male, or indeed female who takes testosterone. The female genitals respond by getting more pronounced when they're exposed to too much testosterone.

When I was first diagnosed I was quite a novelty for my doctors as I did not have the small penis they were expecting. As far as I'm concerned I have never had a small penis. Oh for sure there are men with a bigger penis than me, but what do I care, mine works just fine, that's all that matters to me. Males make lots of testosterone throughout their lives to maintain their genitals primarily. Logically if a male has insufficient testosterone, especially soon after the onset of puberty as it is with XXY who develop KS, then they will not have very well developed genitals. If an XXY who developed KS has much more testosterone than the accepted 'right dose' is it conceivable to me that his genitals will respond accordingly. I believe that is the case with me.

OK, i will take your reply as being a possibility. as my level of testosterone has been decreased now, i will pay attention to the size an thickness of it over the next few weeks and months. though its difficult as i dont have a partner now and i am not having casual sexual partners either, i will have a limited view of it. i will need to make judgement by hand and how much of a grip i have when masturbating, i still do that roughly 5 times daaily which is increased to 7/8 when iv had the injection and slowly lowers towards the end of the 10week cycle. do you find that you are happier at the start of the cycle and more emotional towards the end as in crying and feeling heavy compassion for needy people? I have been like that in the last 6 months since they decreased the amount. I don't know if it is just the things that are happening around me / that it it is connected to the treatment ? What would be your sexperience on this area plz?

Oh yes I saw your pictures on the site you told me about and I was well surprised at the length and thickness of you penis!! does it hang like that in a flaccid/limp way? or is that facing downward when it is fully erect? and YES I agree that most men/grown lads have big testicles. I have been looking at guys that wear sports wear especially tracksuit bottoms and they almost all will have their penis sitting on their testicles and the protruding shape showing through the material. also for men in suits /uniforms this is the case through their thin material trousers or tight fitting jeans etc even when I have been to saunas in the past, if they have a small or thin penis it is still likely/ in my sexperience the testicles are out of proportion by being bigger.

I don't have a cycle, I recently changed to Andriol capsules which I take twice a day @ 80mgs per dose, or 160mgs a day. I don't believe testosterone directly affects mood, but do believe males with low testosterone over a long period of time will have erection issues, which will cause mood problems. Everybody gets tired and when people are tired they can be moody, it's what they're tired all the time for no apparent reason that they can be moody all the time. I think XXY males have a great many more serious issues that can affect their mood than merely their testosterone level, and many complain of mood problems even when they have sufficient testosterone, indicating to me testosterone is not the cause.

I don't really see any point in discussing my penis size when erect, I'm not in a competition to see who's biggest as it literally means nothing, I have an adequate working penis, that is what matters, and it only matters to me and my partner. But even then we're happy with what we have, so why that is relevant to any other man or woman is a mystery. I could blame the medical profession for spending so much time on penis size, then again I could blame women too, and men! In reality I'm sterile, I have no sperm and I never did have any. I ejaculate every day, usually, and I only need a 3 inch penis when erect to stimulate my partners clitoris with it, obviously flaccid I have much more than 3 inches, therefore you can be assured I'm bigger erect.

My reason for making naked images of myself available is to prove not all XXY guys have a small penis, which I do adequately. Apparently many XXY men complain of, or mention, being quite small compared to me, but then the same is true for XY men, everybody literally is different. I'm sure I have mentioned I have seen other males with a much bigger penis than me, and I don't care, I can't have what they have and I can't use what they have, as it's what they have. I think men would be much happier in themselves if they stopped comparing themselves to each other. Maybe XXY males would be much happier if the medical profession stopped measuring penises of XXY males when they were diagnosed, as XXY males tend to worry about things they can do nothing about.

Getting away from penis sizes and jerking off ;-) that comment further up ... HE SHOULD DEFINITELY ASK FOR A REFERRAL TO HIS LOCAL ENDOCRINOLOGIST WHICH WILL LIKELY BE AT THE HOSPITAL? I would strongly advise against going to any hospital in the UK where the endocrinology department was not led by a professor because the standard of treatment will be marginally inferior and more prone to casual errors in treatment. Sadly of course if travel is too expensive then choices will be naturally limited but support groups tend to have similar advice presumably based on a wider margin of experience than just mine.

Perhaps your GP meant that the karyotype and the syndrome are seen separarely. Are you sure that there was no mistake in the karyotyping? If so, you might be XYX instead, which doesn't have a name. I'd suggest you ask for more detailed tests to confirm whether the extra X comes from your mother, which would be XXY, or from your father, which would be XYX. If the latter, then you don't have Klinefelter's syndrome. Either way, according to my medical and veterinary textbooks, these are conditions that are not associated with actual illnesses and they are self-limiting as they cause sterility.