I'd like Patient UK to change some information?

Posted , 8 users are following.

Hello, I was suspected of having Klinefelter's syndrome in late 1975, I was karyotyped in 1976, and I began therapy in 1977.

I have been studying Klinefelter's syndrome since 1976. I believe I am the most knowledgeable patient treated for Klinefelter's syndrome in the world. I certainly know more about it that ALL but 1 of the doctors I have met. Most doctors haven't got a clue.

The information here is old and out of date. It promotes all the commonly held misconceptions about what KS is, and how it's caused.

This is information from a British doctor:

"An unduly pessimistic description of what it

means to have an extra X or Y chromosome is

frequently given to the parents of an affected

fetus or child by geneticists and paediatricians

because the source of their information has

been biased towards abnormality..."

Dr Shirley Ratcliffe

"Long term outcome in children of sex chromosome abnormalities"

1999

I'd like to influence Patient UK to update it's information about KS, to make it more appropriate and representing the truth. I think truth is important.

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  • Posted

    Weird, was only reading your blog last night after having found you on the tube, and so the answer to my question is everything that is out there on the net about this is out of date at best for I don't have Klinefelter's but I am 47,XXY, but because I am XXY doctors say I have Klinefelters which is a condition which can affect XY males as well, but hey my T levels are normal, LH is normal but FSH is in the clouds. As to doctors my experience so far is they either know nothing or defer to the same out of date information and supposition as the internet is filled with. The result is, I educate myself on my own condition, narrow beam focus, the autistic like part of this helps. As to androgen replacement therapy I am not on it as I don't have KS, but I experience a lot and as a result I am not living.
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  • Posted

    Oh hello Andy, I just popped by to 'follow' the post as I forgot when I published it, and I find a reply already! Amazing. OK Right, I'm not a doctor, I'm a patient, I thought I'd throw that in. I read a report just a couple of days ago about KS being associated with normal gonadtropin levels, LH and FSH are gonadtropins.

    So if FSH as elevated that means your testes are not making sperm, according to my Endocrinologist, John W Delahunt, Wellington, New Zealand.

    Yes most of the information on the net about KS is crackpot, in my opinion. KS is also associated with normal levels of Testosterone, low normal that is. It's easily possible to have KS with normal looking T levels. Do you know where your T level actually is, have you got any numbers?

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  • Posted

    Hi Graeme,

    I will send you a Private Message about this and your other post waiting for approval as it contains your email address.

    Regards,

    Alan

    Emis Moderator

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  • Posted

    XXYGuy,

    I'll take your word for it that you have a lot of experience with klinefelter's. I am sure I don't have klinefelters, but I am a bit curious, because I have not studied this, but have been studying many other issues surrounding me, so I might as well learn about this.

    Therefore, please advise who are the top, world respected experts on klinefelters and a link to their writings (or at least one), pm, or otherwise, whatever is allowed on here, of what the correct identifiers to be given a diagnosis of klinefelters are, from childhood to late adult.

    Basically, I am looking for a "quick" summary (whether it be 10 lines, one page etc) of a typical 30-40 year old klinefelters male, who has never been treated for it, namely their endocrine, psychological and physical traits.

    I am aware that whatever you write will be your opinion, and I will take that accordingly and delve from there. I am a modern person who has tapped into the depths of the vast amounts of credible scientific information online, so you won't lose me with technicalities lol. smile

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  • Posted

    Actually, I have been reading and I seem to have ruled out klinefelters. I read your blog as well, I can see you have good knowledge, so I hope your experiences are taken on board by the relevant departments.

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  • Posted

    Off the top of my head John, I'd say Dr Arthur Robinson, Denver, Colorado. Dr Shirley Ratcliffe, England (ret) Dr Bruce Bender, Mary G Linden (nurse), These are medical researchers by the way, I don't know if they actually practice?

    Somebody Schwerdloff or something like that, I met him in person, he wanted to examine me, but I've retired from physical examinations. I no longer have testes so there's nothing to examine, the driving force to have them removed. To be left alone.

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  • Posted

    I like to point out that I'm a patient, not a doctor. When I first started educating people about what KS is, and what it isn't, I got accused of giving medical advice. It was ridiculous. I don't do case studies, I can't give you anything of what you're asking for John.

    There no such thing as a 'typical' KS guy. We're not typical, we're individuals. Like XX's are individuals and XY's are individuals, and X's are individuals. X's what are X's? Women with Turner syndrome! We're human beings not case studies. That's what I'm trying to get people, (doctors are people), away from, this whole idea that we can be fitted into a specific treatment regime, it's just nonsense.

    Some XXY's don't even see themselves as being male. Some XXY's take oestrogen not testosterone. XXY is the key here, not variable symptoms of a disease.

    We are people first.

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  • Posted

    I was diagnosed 4yrs ago when i was 19 can it lead to any kind of mental illnesses as ive been refereed to see aphychiatrist due to me flying off the rails over nothing?o
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  • Posted

    Oh right, I used to do that, all through school, and after for a few years. Is XXY responsible, I think so. Of course only you know your specific circumstances. Seeing a psychiatrist sounds like a very good idea.
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  • Posted

    Also does it mean i wont be eligible to have children
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  • Posted

    No, chitiger, you may not be biologically able to have kids although apparently there are increasing chances of extracting sperm (debatable).
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  • Posted

    It can't be assumed you're infertile without extensive testing. You can use ICSI, IF you have a partner in mind,, if you have an egg, and if you have a sperm, just 1 will do.

    It's not really a 'debate' more of a fact, you either do or do not have sperms that can be extracted for ICSI.

    Search for Dr Silber, and ICSI combined, you'll find everything you're looking for, Dr Silber is also on Twitter.

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  • Posted

    Thanks XXYGuy, I has the sperm extraction procedure this week and they found little there except blood so it is pretty much conclusive that I am infertile. The next step is donor...
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  • Posted

    Thanks guys. Bikerunner how do u feel knowing u are infertile? The thought of it for me is doing my head in
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  • Posted

    Yes, the realisation has made for a tough year. I always thought there might be a slim chance of them finding something so the procedure last week was like a slap to the face. My partner has said, wisely, that although I cannot be a father biologically, I can always be a father in the nurturing sense. I can be someone who can be a role model and the offspring would be at least part of us as she would be impregnated. Once I get past the whole sadness of this, I guess I can adapt.
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