Onnineko
10-26-06, 04:41 PM
About a year ago I found out I had this XXY thing. I knew I was gender dysphoric, was over weight..cholesterol 650 yikes, suffering from extrme fatigue, and in a generally bad mood all the time. Oh and when I was young I had some learning problems that I had to find ways to over come. Yay.. so thats XXY. I also have a more feminine shape than some, but thats easy enough to live with.
Since that time I have learned a great deal about what to do with XXY. Some people have serious medical issues, consider those carefully before changing life critical programs. I learned from personal experience that diet and exercise are extremely important, more so for XXY people, than most everyone else. My diet today is closer to a mediterranian or polynesian, a balance, of nuts and veggies, fruits, some protien (chicken and fish), and it has minimal if any fats and sugars. Less breads, more veggies. More importantly, more fiber! I eat 45 grams of fiber a day now. I also take a multivitamin supplement, and have added additional supplements for 1200 mg calcium and 1000 UI vitamin D daily. Oh and I drink more water.
Exercise is very important along with diet, for offsetting nasty diseases. Specifically cardiovascular (heart) disease and osteoperosis. For exercise I do 6 hours a week of cardio type training or fun, like jazzercise and martial arts. And I do another 3 hours a week of work, weight bearing work, or just weight lifting. I'm up to 50 pushups now. :) My next goal is 100.
There is another posting here where I went into alot more detail about how low hormones is a problem for XXY people, and my solution was a low dose estrogen. Regardless of which you pick, estrogen or testosterone, you should put one of them over the minimum of estrogen 100/750 pg/ml OR testosterone 550/1100 ng/ml.
Above I mentioned osteoperosis and cardiovascular disease. These are the two of the scariest diseases. Osteoperosis builds up slowly over decades, and heart disease your first warning is the last one. We are also prone to prostate and breast cancer. Avoiding these horrible diseases can be done, but you should start young; Get a good diet and more exercise.
The chief fix for osteoperosis is to not smoke, not drink alcohol, get lots of exercise, eat a good diet low in sugars and fat, add 1200 mg calcium to your diet, and get 1000 UI or more of vitamin D. You need the vitamin D so your body with an adequate level of primary hormone can process the calcium. Otherwise you're taking alot of calcium supplements for nothing.
The chief fix for cardiovascular disease is exercise and healthy diet.
We are at a disadvantage for both breast cancer and prostate cancer. The primary reason that people get those, by current medical thought, relates to having excess amounts of the opposite hormone present. Well XXY people by default have more of both hormones than a normal male or female. A typical male for example has less than 25 pg/ml estradiol (estrogen number 2) but a female has generally 200-700, and an XXY person has 50-100. So you're more likely to get prostate cancer if you have a high testosterone, and too much estrogen. Which all XXY people do, if they take lots of testosterone. Likewise XXY people have the same risk of breast cancer that women do, and they get breast cancer because of excess present non-bioidentical estrogen parts or testosterone present. Well XXY people have generally between 60 and 500 ng/ml testosterone, where a female is less than 45 (on the scale of 1100 ng/ml).
This is all important to know information. But what to do with it? Take it to your Endocrinologist or your Doctor, grab em by the smock.. err don't grab em, be nice. But get their attention and say Hey.. This Onnineko guy from the web wants me to ask you alot of questions. But first what do you think of these postings he put up?
So what do you need to know?
1. What is your estradiol (estrogen), testosterone, prolactin, progesterone, SHBG (sex hormone binding glob.), Albimum, and Iron levels? For testosterone you need: Total Testosterone, Free Testosterone, %Free Testosterone. For estrogen you need Total Estrogen and Free Estrogen. The most important test from the testosterone is the %Free testosterone. The %Free Testosterone is perhaps the best test to show if you are low and need more, I wouldn't put that on the total testosterone, since the total does not take your body into consideration, and everyone is different.
2. Then what do you do with that information? As I said above print out these postings from the mad Onnineko person, take them to your Doctor along with a list of your own questions about you, and say Hey! Please explain what this guy is talking about. Or Hey! does this make sense? Then work with your doctor to get a good program worked out for you. Doctors are only as good as the information they have, and XXY is far under the radar. Most of the general practictioners out there had a test where XXY was mentioned once. Thats all they know.
3. A nutritionist or dietician can help you get a good diet, specialized for you.
4. Hormones.. Its likely that being XXY you are going to need a hormone replacement therapy of some kind. Doctors will generally make testosterone available, and often not even check to see if they're offering too much! That should be scary. Before you jump off that cliff consider that estrogen and testosterone are addictive drugs. I'm not saying don't do it. Just consider it. I will still recomend a low dose estrogen for most everyone. No it won't make you a girl. Though the endocrinologist can setup a program to make you male or female if you want that. But there is nothing wrong with a maintenance level low dose of estrogen. And just be XXY.
More information: www.xxytalk.com
I recommend this site, but also bodieslikeours because there is alot of good information on both sites.
Since that time I have learned a great deal about what to do with XXY. Some people have serious medical issues, consider those carefully before changing life critical programs. I learned from personal experience that diet and exercise are extremely important, more so for XXY people, than most everyone else. My diet today is closer to a mediterranian or polynesian, a balance, of nuts and veggies, fruits, some protien (chicken and fish), and it has minimal if any fats and sugars. Less breads, more veggies. More importantly, more fiber! I eat 45 grams of fiber a day now. I also take a multivitamin supplement, and have added additional supplements for 1200 mg calcium and 1000 UI vitamin D daily. Oh and I drink more water.
Exercise is very important along with diet, for offsetting nasty diseases. Specifically cardiovascular (heart) disease and osteoperosis. For exercise I do 6 hours a week of cardio type training or fun, like jazzercise and martial arts. And I do another 3 hours a week of work, weight bearing work, or just weight lifting. I'm up to 50 pushups now. :) My next goal is 100.
There is another posting here where I went into alot more detail about how low hormones is a problem for XXY people, and my solution was a low dose estrogen. Regardless of which you pick, estrogen or testosterone, you should put one of them over the minimum of estrogen 100/750 pg/ml OR testosterone 550/1100 ng/ml.
Above I mentioned osteoperosis and cardiovascular disease. These are the two of the scariest diseases. Osteoperosis builds up slowly over decades, and heart disease your first warning is the last one. We are also prone to prostate and breast cancer. Avoiding these horrible diseases can be done, but you should start young; Get a good diet and more exercise.
The chief fix for osteoperosis is to not smoke, not drink alcohol, get lots of exercise, eat a good diet low in sugars and fat, add 1200 mg calcium to your diet, and get 1000 UI or more of vitamin D. You need the vitamin D so your body with an adequate level of primary hormone can process the calcium. Otherwise you're taking alot of calcium supplements for nothing.
The chief fix for cardiovascular disease is exercise and healthy diet.
We are at a disadvantage for both breast cancer and prostate cancer. The primary reason that people get those, by current medical thought, relates to having excess amounts of the opposite hormone present. Well XXY people by default have more of both hormones than a normal male or female. A typical male for example has less than 25 pg/ml estradiol (estrogen number 2) but a female has generally 200-700, and an XXY person has 50-100. So you're more likely to get prostate cancer if you have a high testosterone, and too much estrogen. Which all XXY people do, if they take lots of testosterone. Likewise XXY people have the same risk of breast cancer that women do, and they get breast cancer because of excess present non-bioidentical estrogen parts or testosterone present. Well XXY people have generally between 60 and 500 ng/ml testosterone, where a female is less than 45 (on the scale of 1100 ng/ml).
This is all important to know information. But what to do with it? Take it to your Endocrinologist or your Doctor, grab em by the smock.. err don't grab em, be nice. But get their attention and say Hey.. This Onnineko guy from the web wants me to ask you alot of questions. But first what do you think of these postings he put up?
So what do you need to know?
1. What is your estradiol (estrogen), testosterone, prolactin, progesterone, SHBG (sex hormone binding glob.), Albimum, and Iron levels? For testosterone you need: Total Testosterone, Free Testosterone, %Free Testosterone. For estrogen you need Total Estrogen and Free Estrogen. The most important test from the testosterone is the %Free testosterone. The %Free Testosterone is perhaps the best test to show if you are low and need more, I wouldn't put that on the total testosterone, since the total does not take your body into consideration, and everyone is different.
2. Then what do you do with that information? As I said above print out these postings from the mad Onnineko person, take them to your Doctor along with a list of your own questions about you, and say Hey! Please explain what this guy is talking about. Or Hey! does this make sense? Then work with your doctor to get a good program worked out for you. Doctors are only as good as the information they have, and XXY is far under the radar. Most of the general practictioners out there had a test where XXY was mentioned once. Thats all they know.
3. A nutritionist or dietician can help you get a good diet, specialized for you.
4. Hormones.. Its likely that being XXY you are going to need a hormone replacement therapy of some kind. Doctors will generally make testosterone available, and often not even check to see if they're offering too much! That should be scary. Before you jump off that cliff consider that estrogen and testosterone are addictive drugs. I'm not saying don't do it. Just consider it. I will still recomend a low dose estrogen for most everyone. No it won't make you a girl. Though the endocrinologist can setup a program to make you male or female if you want that. But there is nothing wrong with a maintenance level low dose of estrogen. And just be XXY.
More information: www.xxytalk.com
I recommend this site, but also bodieslikeours because there is alot of good information on both sites.