Guest guest Posted February 13, 2003 Report Share Posted February 13, 2003 Hi all! I had a vasectomy about two years ago. Two weeks after the operation, my left testicle blew up like a orange and I got a high fever. After being treated for this infection from the operation, I was alright but about six months later, I started experiencing ED problems. These grew but are currently be managed via V. I had my T level tested twice. The first time it was mid day and I tested at about 300 ng/dl. The second time, it was first thing in morning and I tested at 504 ng/dl. The " normal " range is 241-827. I have had off and on pain in and around my left testicle ever since but as of late it has been more noticable. The question I have is whether it is possible that the infection somehow killed my left testicle and, if so, how could I make that determination? Also, if so, could this be contributing to my ED problems? I am told in no uncetain terms that a vasectomy alone could never cause ED but I'm not so sure. Any comments? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Thanks Chris! Sounds like you know quite a bit about this. So, in my case, if my T is low due to LT use of pain meds, does that mean that the meds suppress the pituitary? Also, the fact that my testicles haven't shrunk.....is that mainly from the low amount of Androgel (5mg) or because my situation is primary or secondary? Also, just as a fyi to all, the reason why my doc is satisfied with the mid 500 level is because that puts me right in the middle range for my age (41). The Doc was very up front about many patients coming to him (and other docs) and wanting high T levels....targeting a specific number or range, rather than the symptoms. I could tell by his body language and how he talked about it, that he and his partners were being very cautious...At least until they built a solid history with the patient(s). After all, T replacement is a controlled substance and technically speaking, the DEA doesn't differentiate much between drugs (say narcotics) in the same class. I know docs are primarily supposed to serve the patient, but anyone who says the DEA and other regulatory issues aren't of concern, are fooling themselves. Thanks to all for listening. I just want to get a better understanding for what's going on. Bill On Apr 28, 2007, at 8:47 PM, chis_az wrote: > Quote > I'm confused by what you are saying. > > When you add T to your body, usually the resonse by the pituitary is > to lower the output of your testicles keeping your level the same as > before. > Unquote > > Wrong. > > What you are saying is not always the case at all. > > If a man is producing too little testosterone and the cause is > primary, then adding testosterone would reduce LH but could reduce it > into the normal range and not lower the limited amount of > testosterone already being produced by the testicles. > > What you are describing classically tends to happen more in secondary > or metabolic cases of hypogonadism. With primary hypogonadism it is > easily possible to be on TRT and npot have suppression of the limited > endogenous production. > > Quote > To provide more than your testicles provide now you need to > add more than you are taking as the testicles usually shut down. > Unquote > > Not in many primary cases. > > Quote > It the testicles are working correctly and your level is low, the > pituitary may not be providing enough hormone to turn on the testicles > sufficiently. This hormone can also be provided instead of T to make > the testicles provide enough to raise your level to a healthy level. > Unquote > > " If " is the operative word. > > Quote > Your level of T needs to be above 800 to feel the benefits of TRT and > your testicles should be shut down when you are adding that much T. > Unquote > > This is plain wrong. You cannot set an abstract level and say this > is what is the best level. That is to completely misunderstand the > complexities and dynamics involved. > > The dosage of TRT and the testosterone levels achieved are always > best at the level that suits the individual patient. > > This mans doctor said quote > he treats the " symptoms " and doesn't judge by numbers > Unquote > > He is spot on and quite correct to do that. > > I've been on Androgel for about a year > > now...5mg per day. To the best > > > of my knowledge, my testicles have not decreased in size, and in > fact, > > > my orgasms have become more powerful. Additionally, I used to > have > > > little yellow granules in my semen....The urologists said they > were a > > > part of the semenical vessels aging...They seem to be gone as > well. My > > > question is this....Since testicles didn't shrink and seem to be > > > operating ok, does that lead one in a certain direction (or > another) > > > re: my very low T levels? When I started, total T was 17 ish > (free T > > > wasn't tested). My free T is now in the 500-600 range...I know > that's > > > not great, but seems to be ok. Any advice / feedback would be > > > appreciated. > > > > > > > > > > > > > > > > > > > > > Co-Moderator " Don't believe anything you hear and only half of > what > > you see. " > > > Phil > > > > > > --------------------------------- > > > Ahhh...imagining that irresistible " new car " smell? > > > Check outnew cars at Autos. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Hi Bill, The cause of hypogonadism, primary, secondary, metabolic etc should really have been made prior to TRT. It is very difficult once you are on TRT to go back and evaluate the cause of these problems, or at least it is without leaving the you ill as it requires coming off of TRT for a significant period of time. If you are well I would not recommend doing that. I have explained a situation within which it is easily possible to have TRT and little to no reduction in your own endogenous production of testosterone. That can readily happen in primary cases. Certainly the fact that your testicles have not appeared to be reduced in size would tend to indicate little to no reduction in endogenous testosterone. The fact of the matter is that the most important factors here are; Has the TRT resolved your symptoms, are you well and enjoying life? It does not matter what your dosage is, neither does it matter what your testosterone level is as long as the answer to the previous questions are yes. I find it to be completely crazy when people say things like you must have a level of this or that, because they have no idea what they are talking about. There are dozens of reasons why one man can be healthy and feel great at one level and another not. A man with low SHBG for instance might be very well at a slightly lower total testosterone level as they might have a good free testosterone level which suits them perfectly. Genetics play a huge factor here as well. A man with a low number of CAG androgen receptor repeats would be more sensitive to the effects of testosterone and might not require as high a level of testosterone as many other men for instance, the reverse is of course true. The normal range for testosterone is a range that 90 plus percent of people fall within. Whether you are at 300ng/dl or 1000ng/dl all that matters is that you are healthy and feel that your body is supported with your level of testosterone. I mean people are not or at least should not be diagnosed on the basis of bloods alone. It is only symptoms of hypogonadism in the setting of suspect levels that should bring about a diagnosis and only symptoms which necessitate an increase or change in medication. So a man can be well, have a great libido, erections, be healthy in every way and have 300ng/dl, but another man maybe ill and have potency problems, osteopenia, fatigue etc any set of hypogonadal symptoms you care to think of at 500ng/dl and require a high level of testosterone. We are talking variability here and it is the patients and symptoms that should be treated not the numbers, the numbers are just supposed to be helpful in terms of guidance and give an indication as to what might be going on. If you felt ill and had many symptoms of hypogonadism then it might make sense to consider what the cause of your problems was and in doing so evaluate both bloods and symptoms. If you felt poor and your testosterone was 800ng/dl, which is the promised land according to some, then we might find that you were ill because you had high SHBG and a reduced free testosterone, or we might find that you had very high estradiol which independently caused you some of your symptoms etc… Variability…. As for the dose that someone is on. I don't want to get started on that because that just drives me bananas. The fact is there is not one endocrinologist in the world who can say with any assurance at all how each person will react to TRT. If Androgel 5g is given to two men with pre treatment levels of 280ng/dl, one man could end up with a testosterone levels of 200ng/dl post treatment and the other 800ng/dl. The reason for this is down to the number of complex issues at hand, everything from abortion, conversion to DHT and Estradiol, to liver function… If you have read all this you are mad as a hatter Bottom line All that matters is symptoms and being well, if you have that then everything else can go to hell in hand cart. Chris I've been on Androgel for about a year > > > now...5mg per day. To the best > > > > of my knowledge, my testicles have not decreased in size, and in > > fact, > > > > my orgasms have become more powerful. Additionally, I used to > > have > > > > little yellow granules in my semen....The urologists said they > > were a > > > > part of the semenical vessels aging...They seem to be gone as > > well. My > > > > question is this....Since testicles didn't shrink and seem to be > > > > operating ok, does that lead one in a certain direction (or > > another) > > > > re: my very low T levels? When I started, total T was 17 ish > > (free T > > > > wasn't tested). My free T is now in the 500-600 range...I know > > that's > > > > not great, but seems to be ok. Any advice / feedback would be > > > > appreciated. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Co-Moderator " Don't believe anything you hear and only half of > > what > > > you see. " > > > > Phil > > > > > > > > --------------------------------- > > > > Ahhh...imagining that irresistible " new car " smell? > > > > Check outnew cars at Autos. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. Ron ________________________________ From: " chris.hayden@... " <chris.hayden@...> Sent: Sunday, March 8, 2009 7:29:10 PM Subject: Testicle Question Hello- Have a question for those more experienced than I..... I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. Thanks in advance. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Ron I also have small testicles and plan on finding out cause - did you get karotype test done based on TT,LH & FSH values? and how has TRT helped you from how you felt before re symptoms? also what age were you when diagnosed/treated? Chris > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > Ron > > > > > ________________________________ > From: " chris.hayden@... " <chris.hayden@...> > > Sent: Sunday, March 8, 2009 7:29:10 PM > Subject: Testicle Question > > > Hello- > > Have a question for those more experienced than I..... > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > Thanks in advance. > > Chris > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 I have also heard that the scrotum will sometimes shrivel and change in texture to something almost leathery. Has anyone experienced this? > > > > > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > > > Ron > > > > > > > > > > ________________________________ > > From: " chris.hayden@ " <chris.hayden@> > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > Subject: Testicle Question > > > > > > Hello- > > > > Have a question for those more experienced than I..... > > > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > > > Thanks in advance. > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 I had extremely small testicles until they were eventually removed. I was born with chryptochordism and didnt have it correct until I was 10 ( way too late I would later find out). I didnt know much about this stuff until I was an adult going thru orchiectomies ( one side at a time 11 years apart) They had always been small and very painful. Until I seen a doctor that really cared about what I was saying, I had to " live with the pain " . I'd like to take each one of those docs and kick them in the nuts and ask them if hurts. That is what I was experiencing but told it was all in my head. I had been on TRT shortly after I had first side ( left) removed. I did not experience any more atrophy with the right side, just the constant pain. It is gone as of last April and I am happy to say I am pain free. My TRT is being increased. I am having trouble getting it adjusted but it will in time. Hang in there From: tomubl <ubl@...> Subject: Re: Testicle Question Date: Saturday, March 14, 2009, 2:23 PM I have also heard that the scrotum will sometimes shrivel and change in texture to something almost leathery. Has anyone experienced this? > > > > > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > > > Ron > > > > > > > > > > ____________ _________ _________ __ > > From: " chris.hayden@ " <chris.hayden@ > > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > Subject: Testicle Question > > > > > > Hello- > > > > Have a question for those more experienced than I..... > > > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > > > Thanks in advance. > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 My doctor prescribes 300IU injections of HCG 3 times per week to counteract the effect of testes atrophy with Testosterone Replacement Therapy. I am not sure if it actually helps or not. Since I do not pay adequate attention to the size of my testes I cannot tell it is effective. I do know that if I stop doing it my semen volume goes down. > > > > > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > > > Ron > > > > > > > > > > ________________________________ > > From: " chris.hayden@ " <chris.hayden@> > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > Subject: Testicle Question > > > > > > Hello- > > > > Have a question for those more experienced than I..... > > > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > > > Thanks in advance. > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 I had to re-read because I thought you took my story. I had the same surgery at 10. Bastards didn't check my hormones because they thought I " pulled them up " rough-housing as a boy. I am fortunate I guess, not to have that disscussion. I hope you can comfortable talking to your doctor about this. I don't know what we can do. From: tomubl <ubl@...> Subject: Re: Testicle Question Date: Saturday, March 14, 2009, 2:23 PM I have also heard that the scrotum will sometimes shrivel and change in texture to something almost leathery. Has anyone experienced this? > > > > > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > > > Ron > > > > > > > > > > ____________ _________ _________ __ > > From: " chris.hayden@ " <chris.hayden@ > > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > Subject: Testicle Question > > > > > > Hello- > > > > Have a question for those more experienced than I..... > > > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > > > Thanks in advance. > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 > > I have also heard that the scrotum will sometimes shrivel and change in texture to something almost leathery. Has anyone experienced this? > > > Hi During years of hypogonadism, my testicles shrank a lot. Now I am on TRT for 18 months and the shrinkage seems to go on. My testicles are those of a fifteen years old teenager (30 mm = 1 2/10 inch against 40mm 1 " 6/10 two years ago). Being smaller and lighter they slide up and stay in the inguinal canals most of the time so my scrotum is empty. Sometimes the skin is pending but more and more my scrotum is contracted and it appears as a little pouch like half a walnut sticked on the base of the penis. The skin is compact and seems to become like cardboard. I presume the cremaster muscle also takes advantage of the testosterone as the others muscles do... Arno Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 How are you getting that accurate of a measurement? I asked my primary, so he checked them out. He said they seem the same size as his. I responded and said " So that means we can still go to the Wayne film festival. " The translation for bad humor was " So we are not gurly men. " Bottom line, I know my testicles are smaller now and the scrotum is looking more and more like an oversized prune skin. I get theraputic massage from time to time and the therapist made a comment that they looked all shriveled up, not the best ego boost. Will HCG Or any other topical cream make your sack skin return to normal? > > > > I have also heard that the scrotum will sometimes shrivel and change in texture to something almost leathery. Has anyone experienced this? > > > > > > > Hi > During years of hypogonadism, my testicles shrank a lot. Now I am on TRT for 18 months and the shrinkage seems to go on. My testicles are those of a fifteen years old teenager (30 mm = 1 2/10 inch against 40mm 1 " 6/10 two years ago). Being smaller and lighter they slide up and stay in the inguinal canals most of the time so my scrotum is empty. Sometimes the skin is pending but more and more my scrotum is contracted and it appears as a little pouch like half a walnut sticked on the base of the penis. The skin is compact and seems to become like cardboard. I presume the cremaster muscle also takes advantage of the testosterone as the others muscles do... > > Arno > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 I had a mother that was freaked out that her son had enlarged nipples at 16 years of age, so I was referred to the Children's Hospital of Philadelphia where a karotype was done, along with a slew of other tests, I had cosmetic surgery for Stage 1 gynecomastia, which turned out to be butchery. The diagnosis at 16 years of age was kept from me, (my parents were embarrassed by the diagnosis and didn't want me to know), until I ordered my records at 27 years of age. By then I had already figured it out but was disappointed in reading my medical records. From that time of 16, until I was 42 years old, I could not get on testosterone. With each new, so-called expert on Klinefelter syndrome between Phila., and Houston, I had a karyotype done because they did not believe I was XXY, T which was abnormally low, and LH/FSH which were abnormally high, and a complete history and physical. Since I was " within normal limits " for physical appearance and hair growth, my testicles were very small, 2-3 ml each, little to no sex drive, they all believed I was " high functioning " and if I was looking for testosterone, I was obviously drug seeking. That is with a diagnosis including a karyotype for primary testicular failure and XXY. I later was told that I dressed too good, talked too good and presented too good to get treatment. At 43, with chronic bone pain leading to a diagnosis of advanced osteopenia and osteoarthritis, I went to another endocrinologist, who again repeated all the tests and still didn't want to put me on T, I stated my case and the literature and he reluctantly did so. For the first time in my life, I had a sex drive and was able to gain a little bit of muscle tissue. But the injections of T, 200mg/14 days caused polycythemia with a hemaglobin of 18, hematocrit of 54, increased my blood pressure, caused severe cystic acne to chest and back and increased male patterned baldness significantly. I was switched to AndroGel when it came on the market on a low dose to keep sex drive intact and mood swings at bay. No longer have polycythemia and the acne is gone. It's now been 11 years on T. My LH/FSH are lower but not within the normal range, cholesterol is higher, they refuse to get an estradiol, because my doc says he will not do anything about it, if it is high. I'm 5'7 " , at 170 lbs, hardly the classical picture of Klinefelter syndrome. As a practicing RN for almost 30 years, I have a very low personal opinion of the medical profession because they practice by the rule of " do no harm " and prefer to only treat acute and not chronic problems unless it is life-threatening. While I have many conditions associated with the extra X, as a result of years of untreated chronic hypogonadism, I have learned that what is documented in the literature for treatment of primary and secondary hypogonadism is not what is practiced. These are non-life threatening syndromes (I've heard it too many times) and the easiest path for physicians in the USA to take is not to treat us. There is no money in it. I don't believe that these professionals believe in our quality of life issues and I don't know how to address them short of circumventing the system. AND, I've learned that it is more difficult to find a doc who will acknowledge or treat secondary or idiopathic hypogonadism. In testicular failure, taking hCG or Clomid or any of the precursors to increase gonadotropins are useless, because we already have abnormally high LH and FSH. And, for reasons unknown, we don't have much of an increase of muscle mass when we do take androgens. XXY is a physically deforming syndrome for many and bigotry and discrimination is alive and well when it comes to our healthcare. Ron ________________________________ From: chrisdl2008 <chrisdl2008@...> Sent: Saturday, March 14, 2009 5:30:01 AM Subject: Re: Testicle Question Ron I also have small testicles and plan on finding out cause - did you get karotype test done based on TT,LH & FSH values? and how has TRT helped you from how you felt before re symptoms? also what age were you when diagnosed/treated? Chris > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > Ron > > > > > ____________ _________ _________ __ > From: " chris.hayden@ ... " <chris.hayden@ ...> > > Sent: Sunday, March 8, 2009 7:29:10 PM > Subject: Testicle Question > > > Hello- > > Have a question for those more experienced than I..... > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > Thanks in advance. > > Chris > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Ron, You are right on with that assessment about the medical profession. I too had the devastating physical and psychological effects of hypo as a tennager. The gynecomastia and small equipment were all part of it. I also had painful testicles due to a botched surgery ( at age 10) to correct undescended as an infant. Way too late ( do no harm) Because of that, it left me sterile and somewhat undeveloped. I sought help for the gynecomastia too. I was told to exercise and lose weight (?, 5'6 " and 124 lbs) Do no harm. Testicles were so painful I wanted them removed. I was told it was all in my head. Do no harm. Finally, at age 40, I had one side removed after finding a doc that actually listened to me and understood what I was talking about. Still had pain the other side and it was removed last year at age 51. I know what you are talking about. I had to deal with all that crap just like you. Looking back, it was bad care as a child that left in this condition and the associated problems. It has angered me especially since my testicular pain is gone when they were removed. No one seemed to listen to me as if I was crazy. I dint have Kleinfelters but I know of the effects. Mine are very similar. It is great to finally find a place to talk about it and vent at times. Thanks for listening. From: Ron St. Aubyn <ruxxy2@...> Subject: Re: Testicle Question Date: Tuesday, March 17, 2009, 3:30 PM I had a mother that was freaked out that her son had enlarged nipples at 16 years of age, so I was referred to the Children's Hospital of Philadelphia where a karotype was done, along with a slew of other tests, I had cosmetic surgery for Stage 1 gynecomastia, which turned out to be butchery. The diagnosis at 16 years of age was kept from me, (my parents were embarrassed by the diagnosis and didn't want me to know), until I ordered my records at 27 years of age. By then I had already figured it out but was disappointed in reading my medical records. From that time of 16, until I was 42 years old, I could not get on testosterone. With each new, so-called expert on Klinefelter syndrome between Phila., and Houston, I had a karyotype done because they did not believe I was XXY, T which was abnormally low, and LH/FSH which were abnormally high, and a complete history and physical. Since I was " within normal limits " for physical appearance and hair growth, my testicles were very small, 2-3 ml each, little to no sex drive, they all believed I was " high functioning " and if I was looking for testosterone, I was obviously drug seeking. That is with a diagnosis including a karyotype for primary testicular failure and XXY. I later was told that I dressed too good, talked too good and presented too good to get treatment. At 43, with chronic bone pain leading to a diagnosis of advanced osteopenia and osteoarthritis, I went to another endocrinologist, who again repeated all the tests and still didn't want to put me on T, I stated my case and the literature and he reluctantly did so. For the first time in my life, I had a sex drive and was able to gain a little bit of muscle tissue. But the injections of T, 200mg/14 days caused polycythemia with a hemaglobin of 18, hematocrit of 54, increased my blood pressure, caused severe cystic acne to chest and back and increased male patterned baldness significantly. I was switched to AndroGel when it came on the market on a low dose to keep sex drive intact and mood swings at bay. No longer have polycythemia and the acne is gone. It's now been 11 years on T. My LH/FSH are lower but not within the normal range, cholesterol is higher, they refuse to get an estradiol, because my doc says he will not do anything about it, if it is high. I'm 5'7 " , at 170 lbs, hardly the classical picture of Klinefelter syndrome. As a practicing RN for almost 30 years, I have a very low personal opinion of the medical profession because they practice by the rule of " do no harm " and prefer to only treat acute and not chronic problems unless it is life-threatening. While I have many conditions associated with the extra X, as a result of years of untreated chronic hypogonadism, I have learned that what is documented in the literature for treatment of primary and secondary hypogonadism is not what is practiced. These are non-life threatening syndromes (I've heard it too many times) and the easiest path for physicians in the USA to take is not to treat us. There is no money in it. I don't believe that these professionals believe in our quality of life issues and I don't know how to address them short of circumventing the system. AND, I've learned that it is more difficult to find a doc who will acknowledge or treat secondary or idiopathic hypogonadism. In testicular failure, taking hCG or Clomid or any of the precursors to increase gonadotropi ns are useless, because we already have abnormally high LH and FSH. And, for reasons unknown, we don't have much of an increase of muscle mass when we do take androgens. XXY is a physically deforming syndrome for many and bigotry and discrimination is alive and well when it comes to our healthcare. Ron ____________ _________ _________ __ From: chrisdl2008 <chrisdl2008> Sent: Saturday, March 14, 2009 5:30:01 AM Subject: Re: Testicle Question Ron I also have small testicles and plan on finding out cause - did you get karotype test done based on TT,LH & FSH values? and how has TRT helped you from how you felt before re symptoms? also what age were you when diagnosed/treated? Chris > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > Ron > > > > > ____________ _________ _________ __ > From: " chris.hayden@ ... " <chris.hayden@ ...> > > Sent: Sunday, March 8, 2009 7:29:10 PM > Subject: Testicle Question > > > Hello- > > Have a question for those more experienced than I..... > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > Thanks in advance. > > Chris > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Ron I'm surprised you have had so much difficulty in getting on TRT in the US. If you have private medical insurance and can show you have genuine symptoms backed up by hormones outwith normal range the endo should treat you - they should not be concerned with where the money is coming from. Indeed most people in the US seem to get TRT w/o any problem if they have medical insurance/private funds. Here in the UK the picture is completely different - the taxes deducted from our wages in part contribute to the National Health Service (NHS). The doctors therefore have to control their budgets which are in turn controlled by the government. Therefore we don't get anything without a serious need for it - even then people who have terminal illnesses don't always get drugs which would help extend their life that bit longer if it's not economically justifiable...it's whats known over here as a postcode lottery. Also medical community in UK takes testosterone deficiency even less seriously than in the US. Add to that the fact the medical profession practice by the rule 'do no harm' as you quite rightly point out then they are put off treating people incase they develop cancer as a result of hormone treatment even although it is widely accepted TRT does not cause cancer per se but may unmask predeveloped cancer cells a bit quicker than they would otherwise have been unmasked. I have LH & FSH of 4.5 U/l from one reading - this would appear to be mid range although I know LH is pulsatile in nature and cannot draw any conclusions from one reading when taking this fact into acount. Also I have read of cases of people having klinefelters with LH & FSh in normal range and TT low. If I was XXY variant with some normal XY cells I wonder if this would be picked up if I had karotype test done in anycase - maybe they would need to do several chromosome analyses I don't know. Have you been on androgel for 11 years then? or have I picked you up wrong. I ask because most people struggle to get decent T levels to start with creams/gels let alone manage to maintain decent levels over several years like you. Also you say " I'm 5'7 " , at 170 lbs, hardly the classical picture of Klinefelter syndrome " Is this not post TRT though? so would not be classical klinefelters phenotype for that reason? Cheers Chris > > > > > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > > > Ron > > > > > > > > > > ____________ _________ _________ __ > > From: " chris.hayden@ ... " <chris.hayden@ ...> > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > Subject: Testicle Question > > > > > > Hello- > > > > Have a question for those more experienced than I..... > > > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > > > Thanks in advance. > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Private insurance has nothing to do with their decision not to treat. Doctors here in the USA treat according to how well the individual is functioning. They do not treat the diagnosis. If the patient is working a job, have the ability to dress themselves, take care of hygiene, converse their symptoms fairly well, not in pain, no malignancies, unless there is a life threatening issue. Doctors here do not want to treat chromosomal anomalies that are diagnosed regardless of the obvious hypogonadal symptoms. This goes for endocrinologists and urologists as well. I've always been 5'8 " (172.7 cm) and 170 pounds (77 kg). My height shrunk some in the last year due to osteoporosis. I started on testosterone 11 years ago and have had insurance all my life, I'm 54 years old. Classical Klinefelter syndrome phenotype and this remains in the textbooks is a height of over 183 cm., scant to no body hair growth, normal to low normal intelligence, wide hips, poor social skills, lack of muscle tone, speech and language disorders and the universal sign, small firm testicles, less than 5 ml. The thought behind the height was there may not be enough testosterone in puberty to seal the growth plates. That theory for XXY is still under investigation. It is the same for XXYs in Europe and all parts of the globe. An example for you, my partner, has idiopathic hypogonadal hypogonadism and insurance. His primary care doc did a testosterone level and it was extremely low. He was automatically written a script for testosterone and gave him a shot of it right there in his office. My partner is 181 cm and 118 kg., has more hair than a bear rug and normal sized testicles and no symptoms of hypogonadism other than his lab values. I had the lab, the autoimmune syndromes and the osteoporosis and many times repeated karyotypes and it was a fight to get it when I did. At the time, we had the same primary care practice. It is possible to have both primary and secondary hypgonadism. To have low to normal LH/FSH and a low to normal testosterone. A chromosomal analysis will show if you are XXY or mosaic XXY meaning you can have a mix or 2 or more cell lines, ie., XXY, XY, XXXY etc. Only a karyotype will determine an extra X and only one will pic up the cell lines. There are questions as to whether more than one karyotype should be done to look at more cell lines but that has not been proven, at least not in the literature that I can find. One should do it. Ron ________________________________ From: chrisdl2008 <chrisdl2008@...> Sent: Tuesday, March 17, 2009 2:31:28 PM Subject: Re: Testicle Question Ron I'm surprised you have had so much difficulty in getting on TRT in the US. If you have private medical insurance and can show you have genuine symptoms backed up by hormones outwith normal range the endo should treat you - they should not be concerned with where the money is coming from. Indeed most people in the US seem to get TRT w/o any problem if they have medical insurance/private funds. Here in the UK the picture is completely different - the taxes deducted from our wages in part contribute to the National Health Service (NHS). The doctors therefore have to control their budgets which are in turn controlled by the government. Therefore we don't get anything without a serious need for it - even then people who have terminal illnesses don't always get drugs which would help extend their life that bit longer if it's not economically justifiable. ..it's whats known over here as a postcode lottery. Also medical community in UK takes testosterone deficiency even less seriously than in the US. Add to that the fact the medical profession practice by the rule 'do no harm' as you quite rightly point out then they are put off treating people incase they develop cancer as a result of hormone treatment even although it is widely accepted TRT does not cause cancer per se but may unmask predeveloped cancer cells a bit quicker than they would otherwise have been unmasked. I have LH & FSH of 4.5 U/l from one reading - this would appear to be mid range although I know LH is pulsatile in nature and cannot draw any conclusions from one reading when taking this fact into acount. Also I have read of cases of people having klinefelters with LH & FSh in normal range and TT low. If I was XXY variant with some normal XY cells I wonder if this would be picked up if I had karotype test done in anycase - maybe they would need to do several chromosome analyses I don't know. Have you been on androgel for 11 years then? or have I picked you up wrong. I ask because most people struggle to get decent T levels to start with creams/gels let alone manage to maintain decent levels over several years like you. Also you say " I'm 5'7 " , at 170 lbs, hardly the classical picture of Klinefelter syndrome " Is this not post TRT though? so would not be classical klinefelters phenotype for that reason? Cheers Chris > > > > > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > > > Ron > > > > > > > > > > ____________ _________ _________ __ > > From: " chris.hayden@ ... " <chris.hayden@ ...> > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > Subject: Testicle Question > > > > > > Hello- > > > > Have a question for those more experienced than I..... > > > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > > > Thanks in advance. > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 I did read an article that recognized, for the first time, that Klinefelter's exists in men who are not tall. Getting it from a research article into the understanding and practise of doctors, is a giant leap. Nick From: [mailto: ] On Behalf Of Ron St. Aubyn Sent: Tuesday, March 17, 2009 8:42 PM Subject: Re: Testicle Question Private insurance has nothing to do with their decision not to treat. Doctors here in the USA treat according to how well the individual is functioning. They do not treat the diagnosis. If the patient is working a job, have the ability to dress themselves, take care of hygiene, converse their symptoms fairly well, not in pain, no malignancies, unless there is a life threatening issue. Doctors here do not want to treat chromosomal anomalies that are diagnosed regardless of the obvious hypogonadal symptoms. This goes for endocrinologists and urologists as well. I've always been 5'8 " (172.7 cm) and 170 pounds (77 kg). My height shrunk some in the last year due to osteoporosis. I started on testosterone 11 years ago and have had insurance all my life, I'm 54 years old. Classical Klinefelter syndrome phenotype and this remains in the textbooks is a height of over 183 cm., scant to no body hair growth, normal to low normal intelligence, wide hips, poor social skills, lack of muscle tone, speech and language disorders and the universal sign, small firm testicles, less than 5 ml. The thought behind the height was there may not be enough testosterone in puberty to seal the growth plates. That theory for XXY is still under investigation. It is the same for XXYs in Europe and all parts of the globe. An example for you, my partner, has idiopathic hypogonadal hypogonadism and insurance. His primary care doc did a testosterone level and it was extremely low. He was automatically written a script for testosterone and gave him a shot of it right there in his office. My partner is 181 cm and 118 kg., has more hair than a bear rug and normal sized testicles and no symptoms of hypogonadism other than his lab values. I had the lab, the autoimmune syndromes and the osteoporosis and many times repeated karyotypes and it was a fight to get it when I did. At the time, we had the same primary care practice. It is possible to have both primary and secondary hypgonadism. To have low to normal LH/FSH and a low to normal testosterone. A chromosomal analysis will show if you are XXY or mosaic XXY meaning you can have a mix or 2 or more cell lines, ie., XXY, XY, XXXY etc. Only a karyotype will determine an extra X and only one will pic up the cell lines. There are questions as to whether more than one karyotype should be done to look at more cell lines but that has not been proven, at least not in the literature that I can find. One should do it. Ron ________________________________ From: chrisdl2008 <chrisdl2008@... <mailto:chrisdl2008%40> > <mailto: %40> Sent: Tuesday, March 17, 2009 2:31:28 PM Subject: Re: Testicle Question Ron I'm surprised you have had so much difficulty in getting on TRT in the US. If you have private medical insurance and can show you have genuine symptoms backed up by hormones outwith normal range the endo should treat you - they should not be concerned with where the money is coming from. Indeed most people in the US seem to get TRT w/o any problem if they have medical insurance/private funds. Here in the UK the picture is completely different - the taxes deducted from our wages in part contribute to the National Health Service (NHS). The doctors therefore have to control their budgets which are in turn controlled by the government. Therefore we don't get anything without a serious need for it - even then people who have terminal illnesses don't always get drugs which would help extend their life that bit longer if it's not economically justifiable. ....it's whats known over here as a postcode lottery. Also medical community in UK takes testosterone deficiency even less seriously than in the US. Add to that the fact the medical profession practice by the rule 'do no harm' as you quite rightly point out then they are put off treating people incase they develop cancer as a result of hormone treatment even although it is widely accepted TRT does not cause cancer per se but may unmask predeveloped cancer cells a bit quicker than they would otherwise have been unmasked. I have LH & FSH of 4.5 U/l from one reading - this would appear to be mid range although I know LH is pulsatile in nature and cannot draw any conclusions from one reading when taking this fact into acount. Also I have read of cases of people having klinefelters with LH & FSh in normal range and TT low. If I was XXY variant with some normal XY cells I wonder if this would be picked up if I had karotype test done in anycase - maybe they would need to do several chromosome analyses I don't know. Have you been on androgel for 11 years then? or have I picked you up wrong. I ask because most people struggle to get decent T levels to start with creams/gels let alone manage to maintain decent levels over several years like you. Also you say " I'm 5'7 " , at 170 lbs, hardly the classical picture of Klinefelter syndrome " Is this not post TRT though? so would not be classical klinefelters phenotype for that reason? Cheers Chris > > > > > > > > That is a good question. I guess it would depend on a lot of factors, genetics, traumatic injury to the head or body, illnesses, overall health, age, fertility issues, degree and classification of hypogonadism. Most docs are unconcerned on the size or physical appearance of the testicles unless there is a malignancy. Out of pocket cash can buy you more answers. We can live without testicles or ovaries and that is the way most docs see it. I don't share that viewpoint, but as a man living with testicular failure and testicles the size of pecans, it is difficult for me to know personally the answer to your questions, but I do know what most docs and endocrinologists would say, short of " can you afford it. " But I would bet, that it depends on what part of the country you are from and the resources you have available to you. I wish you the best of luck finding the answer. > > > > Ron > > > > > > > > > > ____________ _________ _________ __ > > From: " chris.hayden@ ... " <chris.hayden@ ...> > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > Subject: Testicle Question > > > > > > Hello- > > > > Have a question for those more experienced than I..... > > > > I've read on this forum many times over about HRT & testicle shrinkage and why. I feel like I understand " why. " However, how come in some men on Androgel or whatever form of HRT, the shrinkage does not occur, or occurs only slightly? And this would be without any other meds taken to jump start the testes. > > > > Thanks in advance. > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 Nick Do you still have article you could post on the board? From what I've read klinefelters phenotypes either fit the following classical pictures: - tall or relatively tall i.e. could be 5ft 10inches is classed as tall depending on when studies are written considering average height has increased over the years - often arm span is greater than height with long limbs relative to the trunk of the body - very thin frame due to lack of androgens (low T and low E2) and therefore poor bone growth & musculature and low fat OR (as some reports also suggest and backed up by people that are XXY on here or indeed suffering from low T with no known cause) - adipose fat round waist and gynocomastia - the small firm testicles are present in all klinefelters patients though and that should be most obvious clinical presentation - I've also read klinefelters patients have an enlarged pulp of the tooth in about 50% of cases (taurodauntism) What's not clear to me is whether or not the karotype test for chromosome analysis in klinefelters is 100% accurate particularly in mosiac klinefelters patients with some normal XY cells as well as XXY cells. This presents as very subtle clinical picture/symptoms and therefore may never be picked up or only picked up if couple struggling to conceive. Maybe a certain amount of chromosome analysis needs to be done ...20 rather than one analysis for exaample and/or blood karotyping rather than from skin/bone? I don't know which is more accurate? It seems to me there are an awful lot of people who fit into the above clinical picture/pheotype yet go for the karotype and are told they are not klinefelters but doctors still not able to find the cause after that. Seems reasonable to me that in some cases klinefelters has been ruled out in people when maybe it should not have been due to the analysis not being thorough enough although I am aware that the actual test is accurate (about 99% accuracy) even if the method itself is not entirely full proof > > > > > > > > > > > > That is a good question. I guess it would depend on a lot of factors, > genetics, traumatic injury to the head or body, illnesses, overall health, > age, fertility issues, degree and classification of hypogonadism. Most docs > are unconcerned on the size or physical appearance of the testicles unless > there is a malignancy. Out of pocket cash can buy you more answers. We can > live without testicles or ovaries and that is the way most docs see it. I > don't share that viewpoint, but as a man living with testicular failure and > testicles the size of pecans, it is difficult for me to know personally the > answer to your questions, but I do know what most docs and endocrinologists > would say, short of " can you afford it. " But I would bet, that it depends > on what part of the country you are from and the resources you have > available to you. I wish you the best of luck finding the answer. > > > > > > Ron > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: " chris.hayden@ ... " <chris.hayden@ ...> > > > > > > Sent: Sunday, March 8, 2009 7:29:10 PM > > > Subject: Testicle Question > > > > > > > > > Hello- > > > > > > Have a question for those more experienced than I..... > > > > > > I've read on this forum many times over about HRT & testicle shrinkage > and why. I feel like I understand " why. " However, how come in some men on > Androgel or whatever form of HRT, the shrinkage does not occur, or occurs > only slightly? And this would be without any other meds taken to jump start > the testes. > > > > > > Thanks in advance. > > > > > > Chris > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 On Wed, 18 Mar 2009 06:02:44 -0000, you wrote: >I did read an article that recognized, for the first time, that >Klinefelter's exists in men who are not tall. > >Getting it from a research article into the understanding and practise of >doctors, is a giant leap. I've read Klinefleters is highly varied - there is even something called Klinefelter's mosaic, where some of the cells in the body are XXY and others are not. The mosaic patterns can result in widely varying symptom severity from virtually not existent to severe. http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestU\ RI=/healthatoz/Atoz/ency/klinefelter_syndrome.jsp Of course most doctors only look for " classic " symptoms. This study notes in Denmark only 1/4 of cases are diagnosed : http://jcem.endojournals.org/cgi/content/full/88/2/622 " Postnatally, 696 males of 2,480,858 live born were diagnosed with KS, corresponding to a prevalence among adult men of approximately 40 per 100,000. Less than 10% of the expected number was diagnosed before puberty. Advanced maternal age had a significant impact on the prevalence. " KS is severely underdiagnosed in Denmark. Only approximately one fourth of adult males with KS are diagnosed. " And this testing would likely miss many mosaics. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 Ron Exactly what I was saying - XXY mosiac's are without doubt missed on many occasions due to too few cells being karotyped or maybe certain cells will always show correct chromosomes if they are XY...I would def like to no more about how many cells or if from certain area of the body i.e. testicular tissue is more likely to show XXY cells if they exist > > >I did read an article that recognized, for the first time, that > >Klinefelter's exists in men who are not tall. > > > >Getting it from a research article into the understanding and practise of > >doctors, is a giant leap. > > I've read Klinefleters is highly varied - there is even something > called Klinefelter's mosaic, where some of the cells in the body are > XXY and others are not. The mosaic patterns can result in widely > varying symptom severity from virtually not existent to severe. > http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestU\ RI=/healthatoz/Atoz/ency/klinefelter_syndrome.jsp > > Of course most doctors only look for " classic " symptoms. > > This study notes in Denmark only 1/4 of cases are diagnosed : > http://jcem.endojournals.org/cgi/content/full/88/2/622 > " Postnatally, 696 males of 2,480,858 live born were diagnosed with > KS, corresponding to a prevalence among adult men of approximately 40 > per 100,000. Less than 10% of the expected number was diagnosed before > puberty. Advanced maternal age had a significant impact on the > prevalence. > > " KS is severely underdiagnosed in Denmark. Only approximately one > fourth of adult males with KS are diagnosed. " > > And this testing would likely miss many mosaics. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 I found this which backs up what I've read before about 20 cells needing to be analysed to ensure accuracy...still don't know if blood karotyping is more accurate than tissue or bone karotyping though How accurate is chromosome analysis? Chromosome analysis is highly accurate. Not just one cell, but at least 15-20 cells are examined whenever a chromosome analysis is done. This is to determine whether all cells, or just some cells, have normal chromosomes. Detailed analysis at the microscope and the computer-based image analysis system are performed on at least two cells. The analysts are highly skilled cytogenetic technologists with many years of experience. Laboratory directors (The Genetics Center has two) are licensed by New York State, and the laboratories must pass periodic inspections and proficiency testing. Very small chromosome abnormalities may not be detected by routine chromosome analysis. High resolution chromosome analysis is available, as are special staining techniques and techniques based on molecular genetic technology. Since genetic conditions may be from changes that are too small to be seen under a microscope, normal results of chromosome analysis do not guarantee that there are no genetic problems. The geneticist can discuss these issues more thoroughly, on an individual basis, after obtaining a detailed family history and reviewing any relevant medical information > > > > >I did read an article that recognized, for the first time, that > > >Klinefelter's exists in men who are not tall. > > > > > >Getting it from a research article into the understanding and practise of > > >doctors, is a giant leap. > > > > I've read Klinefleters is highly varied - there is even something > > called Klinefelter's mosaic, where some of the cells in the body are > > XXY and others are not. The mosaic patterns can result in widely > > varying symptom severity from virtually not existent to severe. > > http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestU\ RI=/healthatoz/Atoz/ency/klinefelter_syndrome.jsp > > > > Of course most doctors only look for " classic " symptoms. > > > > This study notes in Denmark only 1/4 of cases are diagnosed : > > http://jcem.endojournals.org/cgi/content/full/88/2/622 > > " Postnatally, 696 males of 2,480,858 live born were diagnosed with > > KS, corresponding to a prevalence among adult men of approximately 40 > > per 100,000. Less than 10% of the expected number was diagnosed before > > puberty. Advanced maternal age had a significant impact on the > > prevalence. > > > > " KS is severely underdiagnosed in Denmark. Only approximately one > > fourth of adult males with KS are diagnosed. " > > > > And this testing would likely miss many mosaics. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2009 Report Share Posted March 19, 2009 There are so many unknowns into why we are the way we are. Tissue typing is not more accurate than the chromosome analysis. I haven't found anything that says getting a testicular or bone sample would be more accurate or find the answer of why. There are a couple of studies going on now, one in California and one in Atlanta, Georgia that are trying to find a less expensive tool by using the methylation of DNA in defining whether or not a person has XXY. So there are a number of studies out there that will be published once the data is collected and hopefully in the next few years. Ron ________________________________ From: chrisdl2008 <chrisdl2008@...> Sent: Wednesday, March 18, 2009 5:45:18 PM Subject: Re: Testicle Question I found this which backs up what I've read before about 20 cells needing to be analysed to ensure accuracy...still don't know if blood karotyping is more accurate than tissue or bone karotyping though How accurate is chromosome analysis? Chromosome analysis is highly accurate. Not just one cell, but at least 15-20 cells are examined whenever a chromosome analysis is done. This is to determine whether all cells, or just some cells, have normal chromosomes. Detailed analysis at the microscope and the computer-based image analysis system are performed on at least two cells. The analysts are highly skilled cytogenetic technologists with many years of experience. Laboratory directors (The Genetics Center has two) are licensed by New York State, and the laboratories must pass periodic inspections and proficiency testing. Very small chromosome abnormalities may not be detected by routine chromosome analysis. High resolution chromosome analysis is available, as are special staining techniques and techniques based on molecular genetic technology. Since genetic conditions may be from changes that are too small to be seen under a microscope, normal results of chromosome analysis do not guarantee that there are no genetic problems. The geneticist can discuss these issues more thoroughly, on an individual basis, after obtaining a detailed family history and reviewing any relevant medical information > > > > >I did read an article that recognized, for the first time, that > > >Klinefelter' s exists in men who are not tall. > > > > > >Getting it from a research article into the understanding and practise of > > >doctors, is a giant leap. > > > > I've read Klinefleters is highly varied - there is even something > > called Klinefelter' s mosaic, where some of the cells in the body are > > XXY and others are not. The mosaic patterns can result in widely > > varying symptom severity from virtually not existent to severe. > > http://www.healthat oz.com/healthato z/Atoz/common/ standard/ transform. jsp?requestURI= /healthatoz/ Atoz/ency/ klinefelter_ syndrome. jsp > > > > Of course most doctors only look for " classic " symptoms. > > > > This study notes in Denmark only 1/4 of cases are diagnosed : > > http://jcem. endojournals. org/cgi/content/ full/88/2/ 622 > > " Postnatally, 696 males of 2,480,858 live born were diagnosed with > > KS, corresponding to a prevalence among adult men of approximately 40 > > per 100,000. Less than 10% of the expected number was diagnosed before > > puberty. Advanced maternal age had a significant impact on the > > prevalence. > > > > " KS is severely underdiagnosed in Denmark. Only approximately one > > fourth of adult males with KS are diagnosed. " > > > > And this testing would likely miss many mosaics. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Ron Standard chromosome analysis (karotyping) done by a cytogenetic laboratory analyst is not expensive...it's about £200-£300 if done privately. In today's money that does not seem expensive to me. It's a very accurate test if it was simply determining if someone is non-mosaic XXY or not - in this case only one cell would need to be analysed to pick up the extra X in the chromosomes. My point is that for mosaic XXY people the body's cells obviously consist of normal XY cells and abnormal XXY cells - the percentage split being the variable. So if only analysing a small number of cells who's to say the cells being analysed might all be XY cells - then the conclusion is someone is not XXY mosiac when infact they are. Of course the more cells analysed the more chance an XXY mosiac will be correctly identified. I think from my own research about 20 cells would be reasonable and accurate in the majority of cases. I would have thought any DNA analysis would have been much more involved that chromosome analysis since DNA consist of thousands of combinations of one's gene's whereas chromosome analysis is less complex and can be seen under a standard microscope. So I don't see this as being less expensive although I admit this field of science is advancing all the time which will bring costs down. The study of genetics and cell stem research is very interesting and I think any future grounbreaking discoveries in medicine will be made as a result of research into this field. Chris > > > > > > >I did read an article that recognized, for the first time, that > > > >Klinefelter' s exists in men who are not tall. > > > > > > > >Getting it from a research article into the understanding and practise of > > > >doctors, is a giant leap. > > > > > > I've read Klinefleters is highly varied - there is even something > > > called Klinefelter' s mosaic, where some of the cells in the body are > > > XXY and others are not. The mosaic patterns can result in widely > > > varying symptom severity from virtually not existent to severe. > > > http://www.healthat oz.com/healthato z/Atoz/common/ standard/ transform. jsp?requestURI= /healthatoz/ Atoz/ency/ klinefelter_ syndrome. jsp > > > > > > Of course most doctors only look for " classic " symptoms. > > > > > > This study notes in Denmark only 1/4 of cases are diagnosed : > > > http://jcem. endojournals. org/cgi/content/ full/88/2/ 622 > > > " Postnatally, 696 males of 2,480,858 live born were diagnosed with > > > KS, corresponding to a prevalence among adult men of approximately 40 > > > per 100,000. Less than 10% of the expected number was diagnosed before > > > puberty. Advanced maternal age had a significant impact on the > > > prevalence. > > > > > > " KS is severely underdiagnosed in Denmark. Only approximately one > > > fourth of adult males with KS are diagnosed. " > > > > > > And this testing would likely miss many mosaics. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 It is the collection and preservation of the blood cells that is required to do the chromosomal analysis, it has to be a fresh sample and the blood cannot be clotted, about 15 ml, which cannot be obtained by a finger stick. If any part of the blood draw clots or the wrong preservative is used the sample is no good. The cost is with the preparation of the cells. With the DNA methylation test, the blood can be a few drops dried on a piece of paper, not specially prepared or treated and can be days, weeks or months old. The cost to you or me might be something we can afford, but to most in the world, the cost of a karyotype and the actual collection of such a test is not feasible or practical or affordable. In all actuality, we are all mosaics, everyone on this earth, men, women, children. We all have cells that have extra Xs and Ys or missing Xs or Ys. Mosaic XXYs are not as handicapped nor stigmatized as true XXYs. They are able to have children, have less of the learning disabilities and do not have the physical identity issues. Treatment is more readily available probably because mosaics are more normal in appearance and functioning. Let's face it, if not identified prenatally, we get karyotyped because we present with a problem. The goal is to have a standardized test to be part of the newborn blood screen that identifies those with a chromosomal anomaly, because that might be the only time, that individual gets their blood drawn for such a screen. Ron ________________________________ From: chrisdl2008 <chrisdl2008@...> Sent: Friday, March 20, 2009 9:12:40 AM Subject: Re: Testicle Question Ron Standard chromosome analysis (karotyping) done by a cytogenetic laboratory analyst is not expensive... it's about £200-£300 if done privately. In today's money that does not seem expensive to me. It's a very accurate test if it was simply determining if someone is non-mosaic XXY or not - in this case only one cell would need to be analysed to pick up the extra X in the chromosomes. My point is that for mosaic XXY people the body's cells obviously consist of normal XY cells and abnormal XXY cells - the percentage split being the variable. So if only analysing a small number of cells who's to say the cells being analysed might all be XY cells - then the conclusion is someone is not XXY mosiac when infact they are. Of course the more cells analysed the more chance an XXY mosiac will be correctly identified. I think from my own research about 20 cells would be reasonable and accurate in the majority of cases. I would have thought any DNA analysis would have been much more involved that chromosome analysis since DNA consist of thousands of combinations of one's gene's whereas chromosome analysis is less complex and can be seen under a standard microscope. So I don't see this as being less expensive although I admit this field of science is advancing all the time which will bring costs down. The study of genetics and cell stem research is very interesting and I think any future grounbreaking discoveries in medicine will be made as a result of research into this field. Chris > > > > > > >I did read an article that recognized, for the first time, that > > > >Klinefelter' s exists in men who are not tall. > > > > > > > >Getting it from a research article into the understanding and practise of > > > >doctors, is a giant leap. > > > > > > I've read Klinefleters is highly varied - there is even something > > > called Klinefelter' s mosaic, where some of the cells in the body are > > > XXY and others are not. The mosaic patterns can result in widely > > > varying symptom severity from virtually not existent to severe. > > > http://www.healthat oz.com/healthato z/Atoz/common/ standard/ transform. jsp?requestURI= /healthatoz/ Atoz/ency/ klinefelter_ syndrome. jsp > > > > > > Of course most doctors only look for " classic " symptoms. > > > > > > This study notes in Denmark only 1/4 of cases are diagnosed : > > > http://jcem. endojournals. org/cgi/content/ full/88/2/ 622 > > > " Postnatally, 696 males of 2,480,858 live born were diagnosed with > > > KS, corresponding to a prevalence among adult men of approximately 40 > > > per 100,000. Less than 10% of the expected number was diagnosed before > > > puberty. Advanced maternal age had a significant impact on the > > > prevalence. > > > > > > " KS is severely underdiagnosed in Denmark. Only approximately one > > > fourth of adult males with KS are diagnosed. " > > > > > > And this testing would likely miss many mosaics. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 On Fri, 20 Mar 2009 14:12:40 -0000, you wrote: >Of course the more cells analysed the more chance an XXY mosiac will be correctly identified. I think from my own research about 20 cells would be reasonable and accurate in the majority of cases. I think it likely important that the cells come from different organs or tissue types. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 Ron I don't know for sure how much difference that makes but seems intuitively correct Trouble is doc's will only want to do blood karotype most of the time and that means only sample from underside of forearm I would agree with your other point that doesn't matter whether tissue, bone or blood sample taken as cells are cells regardless I think ideally samples would be taken from testicles but would rather avoid this as just the same as getting testicle biopsy and no doubt would be painful and intrusive > > >Of course the more cells analysed the more chance an XXY mosiac will be correctly identified. I think from my own research about 20 cells would be reasonable and accurate in the majority of cases. > > > I think it likely important that the cells come from different organs > or tissue types. > Quote Link to comment Share on other sites More sharing options...
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