Carolyn

	XXY Perspectives
	This letter was originally posted on the XXY+ Adult Support Mailing List July 25, 1999. Hi Mark, Thanks for your response. I personally feel that KS is depression, mood swings, blood clots interwoven with 47xxy. Mark, Bill & I (jackie, Bill's wife) are both writing to you. This will therefore, be a collaberation of both of our thoughts. A syndrome is a combination of diseases or conditions. The cause of the various diseases and/or conditions is the 47xxy chromosomal anonmaly. The KS is the broader general term used to describe the subsequent conditions that may or may not be directly related to 47xxy. Not every 47xxy male will develop every or all of the various diseases or conditions associated with KS. Each male is unique and influenced by other intrinsic or extrinsic factors as to the specific conditions which are manifested in that person. Bill has been very effective in romancing the stone. However as he so poignantly states that there is a vast difference between romancing the stone and bedding the stone. One of Bill's favorite statements is, "I love the chase and the dance between a man and a woman. I love the smell and touch of a woman...the smell of her hair, the feel of her skin, and the sparkle in her eyes...late night diners...and breakfast in bed. But when it comes to the chrescendo, I ran out of steam and went to sleep." Bill was diagnosed at a level of 11. He was placed on 5mg pathces daily which only broght his level up to 34 after 40 some days. Bill experienced all the frustrations and difficulty with the patches that you described, including nonsticking. So he was then given 300mg injections every 3 weeks. This resulted in all the highs and lows of KS & HRT every 3 weeks. Initially he was hornier than a three peckered billy goat, wanting sex all the time. He was happy & energetic for 2-3 days. Then he would start the downward slide into fatigue, irritability, hostility, lack of libido, inability to ejaculate or maintain an erection. The great fuluctations in his Testosterone levels caused him to have generalized swelling which even prevented him from making a fist because his fingers and hands were so swollen. He gained excessive weight of about 30 pounds in one month. His breasts increased from a size B to a C cup (Bill is very proud of this now as many of our female friends are jealous). Additionally Bill's penis enlarged and was no longer a "pencil dick" as he called it. Bill's scrotum dropped as it does during puberty, thus causing him irritation for which he needed vasoline. Then the doctor in all his infinite wisdom, took Bill off the shots when Bill had reached a level of 1300 and had slid back down to 900. The doctor wanted to keep Bill at around 1000. He thought that the patches of 5mg a day would be able to maintain Bill at that level. However after three months of living hell while on only the patches, and being placed on an antidepressant, Bill's level plumited to 154 just before we went to Balitmore to the KS Conference. When we arrived home, our doctor had left a message, saying that the patches were not working for Bill because his level was so low. We said, "No shit sherlock"! Top Upon arriving home from John Hopkins Medical Center with the KS Conference material and treatment plan recommendations in hand, we marched into our physician's office advocating the proper Testosterone Rx & medical care. Much to our surprise and delight, our physician was receptive and read the information and has followed the guidelines and our requests. We learned that HRT may not be a correct term for Testosterone Therapy in 47xxy males, because, there is nothing to replace. There is only the administration of Testosterone in someone who, as in Bill's case, does not produce Testosterone. BillD We shared with our doctor, that HRT literature recommendations are made for 46xy males and not 47xxy males. Therefore, the recommended dosage, fequency, and route may not be effective for 47xxy males. We certainly have found this to be true in Bill's case. Now Bill is getting a 300mg shot every 7 days for 3 weeks. Just prior to the 4th week's injection, a testosterone level will be drawn. This level will show how much maintainence testosterone Bill will need to keep his level at 1000. The doctor will draw monthly testo levels to adequately regulate the weekly dosage. We observed that the men at the KS Conference who were on 6-14 day injections were happier and more stable. Those as yourself, and Bill who were on the patches were not as well controlled. We observed this and came to our own conclusions as to the treatment plan we believed would work for Bill. Obviously, the way it was done was not working. We saw the effects of various treatment plans on the men, selected what we thought was the best, and wanted that for Bill. Thus far, we are delighted to say, IT IS WORKING!!!! Bill gets the weekly shot, and I get better. Top Good luck Mark. Jackie & Bill 47xxy Return to the Letters Top Aneuploidies \| E - Mail Lists \| Feedback \| Gender/Intersex \| International XXY Sites \| Links-Canada \| Links for Parents \| Medical Dictionary \| News \| Qu'est-ce Que le Syndrome de Klinefelter (XXY)? \| Site Information \| Site Search \| What is XXY? \| XXY Perspectives \| Top This page first created: May 24, 1999 Bottom

XXY Perspectives

This letter was originally posted on the XXY+ Adult Support Mailing List July 25, 1999.

Hi Mark,

Thanks for your response. I personally feel that KS is depression, mood swings, blood clots interwoven with 47xxy. Mark, Bill & I (jackie, Bill's wife) are both writing to you. This will therefore, be a collaberation of both of our thoughts.

A syndrome is a combination of diseases or conditions. The cause of the various diseases and/or conditions is the 47xxy chromosomal anonmaly. The KS is the broader general term used to describe the subsequent conditions that may or may not be directly related to 47xxy. Not every 47xxy male will develop every or all of the various diseases or conditions associated with KS. Each male is unique and influenced by other intrinsic or extrinsic factors as to the specific conditions which are manifested in that person.

Bill has been very effective in romancing the stone. However as he so poignantly states that there is a vast difference between romancing the stone and bedding the stone. One of Bill's favorite statements is, "I love the chase and the dance between a man and a woman. I love the smell and touch of a woman...the smell of her hair, the feel of her skin, and the sparkle in her eyes...late night diners...and breakfast in bed. But when it comes to the chrescendo, I ran out of steam and went to sleep." Bill was diagnosed at a level of 11. He was placed on 5mg pathces daily which only broght his level up to 34 after 40 some days. Bill experienced all the frustrations and difficulty with the patches that you described, including nonsticking. So he was then given 300mg injections every 3 weeks. This resulted in all the highs and lows of KS & HRT every 3 weeks. Initially he was hornier than a three peckered billy goat, wanting sex all the time. He was happy & energetic for 2-3 days. Then he would start the downward slide into fatigue, irritability, hostility, lack of libido, inability to ejaculate or maintain an erection. The great fuluctations in his Testosterone levels caused him to have generalized swelling which even prevented him from making a fist because his fingers and hands were so swollen. He gained excessive weight of about 30 pounds in one month. His breasts increased from a size B to a C cup (Bill is very proud of this now as many of our female friends are jealous). Additionally Bill's penis enlarged and was no longer a "pencil dick" as he called it. Bill's scrotum dropped as it does during puberty, thus causing him irritation for which he needed vasoline. Then the doctor in all his infinite wisdom, took Bill off the shots when Bill had reached a level of 1300 and had slid back down to 900. The doctor wanted to keep Bill at around 1000. He thought that the patches of 5mg a day would be able to maintain Bill at that level. However after three months of living hell while on only the patches, and being placed on an antidepressant, Bill's level plumited to 154 just before we went to Balitmore to the KS Conference. When we arrived home, our doctor had left a message, saying that the patches were not working for Bill because his level was so low. We said, "No shit sherlock"! Top Upon arriving home from John Hopkins Medical Center with the KS Conference material and treatment plan recommendations in hand, we marched into our physician's office advocating the proper Testosterone Rx & medical care. Much to our surprise and delight, our physician was receptive and read the information and has followed the guidelines and our requests. We learned that HRT may not be a correct term for Testosterone Therapy in 47xxy males, because, there is nothing to replace. There is only the administration of Testosterone in someone who, as in Bill's case, does not produce Testosterone. BillD

We shared with our doctor, that HRT literature recommendations are made for 46xy males and not 47xxy males. Therefore, the recommended dosage, fequency, and route may not be effective for 47xxy males. We certainly have found this to be true in Bill's case. Now Bill is getting a 300mg shot every 7 days for 3 weeks. Just prior to the 4th week's injection, a testosterone level will be drawn. This level will show how much maintainence testosterone Bill will need to keep his level at 1000. The doctor will draw monthly testo levels to adequately regulate the weekly dosage. We observed that the men at the KS Conference who were on 6-14 day injections were happier and more stable. Those as yourself, and Bill who were on the patches were not as well controlled. We observed this and came to our own conclusions as to the treatment plan we believed would work for Bill. Obviously, the way it was done was not working. We saw the effects of various treatment plans on the men, selected what we thought was the best, and wanted that for Bill. Thus far, we are delighted to say, IT IS WORKING!!!! Bill gets the weekly shot, and I get better. Top Good luck Mark. Jackie & Bill 47xxy

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