Intersex and hormones

[dg2085]

HI,

I am anthropology student at Columbia University writing my thesis on the use of hormones to treat various intersex conditions in the child/adolescent or adult. I am very interested in hearing about patient's or parents' experiences with hormone therapies.

If there is anyone interested in sharing their thoughts and opinions with me in an informal and brief conversation, please email me at dg2085@<hidden>. I am located in New York City.

Thanks for reading!

Dana Greenfield

[Sunshine1]

Dear Dana,

The cortisone Hydrocortisone helps my adrenal gland function properly and thus help the rest of the endocrine gland run keeping my whole body running. I fucking love the stuff!

The hospital where I was in the 70's did a wonderful job for the treatment of my adrenal gland. The Hydrocortisone is just a replacement for the cortisol that because of a metabolic defect my adrenal gland doesn't produce much like a diabetic w/ insulin and synthroid for the evil thyroid gland.

Anthropology? Some web site from Texas has a wonderful time line for the history of CAH. I see that you are only intersex in the intersex part and that is you curiosity. Many with CAH don't fit under the intersex umbrella like most of the boys and many girls. The doctors that study CAH have come along way with medical treatment to help us even came up with a pump for those that don't do well with cortisone pill form. It helps some avoid adrenalectomy and it's ok that you aren't into that part you just into the freak side or else you would of answered my first two post to you on the other board. You're not interested in that before cortisone people with CAH? dead from major operations or adrenal crisis. Or any interest in the big picture of the Endos that made advancement for CAH. I bet you have no idea that women w/ CAH give birth to their husbands children or that Lesbian partners go for the sprem doner option

The word intersex is the hook for you ..right? You wrote on the other board how you have PCOS and you read about CAH w/ the word intersex and it got you excited didn't it? What do you think someone with CAH look like or acts like? I bet that chick in your class in the mini skirt and t-shirt with the hang over might have CAH and also the chick in the back dressed in black that looks like she wants to kill everyone might have CAH also

It blows that you are going to write something sweeping all the conditions together. Each condition is unique in the way it is treated and how some aren't treated.

I would love to know how all this ties into anthropology? At least it isn't some raging feminist perspective. You are only 20 --- I'm having a hell of a good time ....really write your paper -- someone born born with a freak of nature medical condition is always good for an A. It's always going to be like that ...A freak condition- nobody gives a fuck that it comes from the adrenal gland or how far medical advancements have come w/ CAH.

Hydrocortisone= functioning adrenal like Synthroid =functioning thyroid gland



Aimee

[maxkwak]

Hi, Dana

I will be happy to answer any questions pertaining to my experience with hormones, if it will be helpful to you.

Here's a little about my background to help you decide: I'm a 54-year-old genetic male with a normal 46 XY chromosome pattern. I was born a male pseudohermaphrodite with ambiguous genitals (a micropenis hidden inside my body, but normal-appearing testes). When I reached puberty, I developed female secondary sexual characterists (full female breasts, wide hips, no beard, no voice change). When a neighbor lady told my mother that she understood how difficult it must be to raise a Lesbian daughter, referring to me, my mother took me to the doctor who put me on oral testosterone. I took oral testosterone for about 12 years. The hormones caused my micropenis to develop to normal size penis outside of my body. I had surgery to remove the breasts, and three minor genital surgeries to help things work a little better.

I consider myself intersexed, although predominatly male. When I was younger, I attempted to experiment with sex with both males and females, but poor ability to function, lack of libido and probably the emotional baggage of being different made the attempts rather absurd. Consequently, I have never married or formed long-term sexual relationships. In our culture, that may seem unthinkable, but it was and is the right decision for me. In fact, I'm one of the happiest people I know.

I stopped taking oral testosterone when I was in my 20s, and that pretty much ended my libido. I'm been able to maintain my male secondary sexual characterists, but recently I developed menopause symptoms. After a battery of test, the doc put me on testosterone patches, but side-effect render me unable to use them. I don't want to take injections because of the hormone-associated cancer risk, and oral testosterone isn't really prescribed anymore. For the time being, I plan to ride through the symptoms as best I can.

[CC]

Mike wrote:
I don't want to take injections because of the hormone-associated cancer risk

Hi Mike

Care to elaborate on this,I must admit can't say I have ever heard of this before.Injectable testosterone is the preferred delivery method for quiet a large number of xxy's and I am sure they would be very concerned if such a risk existed.

C.

[maxkwak]

The judge is still out on this one, but several small-scale studies have suggested a link between blood testosterone levels and an increased incidence of prostate cancer. The endocrinologist who I recently saw really scared me about this finding and I decided not to take testosterone based on what I've been able to find on the subject.

This is an abstract from one study published on the Johns Hopkins Medicine website located at http://www.hopkinsmedicine.org/Press_releases/2004/05_11b_04.html

Johns Hopkins Medicine
Office of Communications and Public Affairs
Media Contact: Trent Stockton
410-955-8665; tstockt1@<hidden>
May 11, 2004

HIGH BLOOD TESTOSTERONE LEVELS ASSOCIATED WITH INCREASED PROSTATE CANCER RISK

Men over 50 years of age with high blood levels of testosterone have an increased risk of prostate cancer, according to a study by researchers at Johns Hopkins and the National Institute on Aging. The finding throws some doubt on the safety of testosterone replacement therapy, the investigators say.

The researchers measured several forms of testosterone in almost 3,000 blood samples collected over a 40-year period from 759 men in the Baltimore Longitudinal Study on Aging, of whom 111 were diagnosed with prostate cancer. One form of testosterone, called free testosterone, which is
biologically active and can actually be used by the prostate, was found to be associated with increased prostate cancer risk, according to J. Kellogg Parsons, M.D., instructor of urology at the Brady Urological Institute at Johns Hopkins and lead researcher of the study.

"Since testosterone replacement therapy increases the amount of free testosterone in the blood, older men considering or receiving testosterone replacement should be counseled as to the association until data from long-term clinical trials becomes available," says Parsons.

The association between free testosterone and prostate cancer risk in older men was not affected by height, weight, percent of body fat, or muscle mass. Total testosterone levels and dehydroepiandrosterone sulfate (DHEAS), another androgenic hormone, were also unrelated to prostate cancer risk, while the protein that binds testosterone in blood, called sex hormone-binding globulin (SHBG), was associated with a slightly decreased risk for prostate cancer.

Higher serum free testosterone is associated with an increased risk of prostate cancer: results from the Baltimore longitudinal study on aging. J. Kellogg Parsons, H. Ballentine Carter, Patricia Landis, E. James Wright, Elizabeth Platz, E. Jeffrey Metter.

This was presented at the 2004 Annual Meeting of the American Urological Society May 8-13, 2004, San Francisco.

[CC]

Mike
After a battery of test, the doc put me on testosterone patches, but side-effect render me unable to use them. I don't want to take injections because of the hormone-associated cancer risk

The link you supplied http://www.hopkinsmedicine.org/Press...05_11b_04.html makes no mention of any cancer risk associated with testosterone injections but,rather the associated risk of testosterone when used as an anti-ageing formula in an otherwise healthy xy male.

Reading over your original post,I would say your situation is a little different to that of a 50 something year old healthy xy male,indeed the body changes you went through at puberty are very similar to what an xxy goes through (low testosterone,high estrogen levels),coupled with identifying as you do "intersexed, although predominatly male"

Please take a moment to read the following article,perhaps it might alter your perspective a little

http://www.mayoclinic.com/health/testosterone-therapy/MC00030

C.

[maxkwak]

Thank you for the link. Your point is well taken that there is a diffence between an aging xy male vs. an xxy male. If I were an xxy male, I would not hesitate to continue taking testosterone injections. My genetic situation is a little different, although my birth physical manifestatons were similar to that of an xxy male and I still have a low testosterone level.

The link between serum testosterone levels and prostate cancer is still a gray area with a number of minor studies show conflicting results. Once again, as you accurately pointed out, those studies involved aging xy males, and that makes a big difference.

I stopped taking testoserone about 30 years ago because, at the time, my doctor was concerned about the cancer link. Thirty years later, I recently saw an endo who had the same fears, so the issue is still out there. The endo did prescribe the testosterone patches for me, but I was unable to tolerate them and I never went back to see him.

[CC]

Hi Mike
I stopped taking testoserone about 30 years ago because, at the time, my doctor was concerned about the cancer link. Thirty years later, I recently saw an endo who had the same fears, so the issue is still out there.

Can I ask what sort of an impact,30years of low testosterone had on your life,in area's such as memory,concentration,libido,energy,strength,mood,bones and so forth.My own experience,has been one of a pretty miserable existence :gulp:

The endo did prescribe the testosterone patches for me, but I was unable to tolerate them and I never went back to see him.

If it makes you feel any better Mike,I have yet to hear of any positive experiences regarding the patches.May I suggest http://health.groups.yahoo.com/group/hypogonadism2/ for all you will ever need to know about testosterone delivery methods.

Best wishes for 2006

C.

[Human]

I've been told I was on estrogen and thyroid since birth. It scares me to think that if something were to happen and I couldn't get them I would feel extremely bad. I don't know what else I've been given, just know my childhood was full of constant injections, medications, catheterizations, uero/genita/abdominal surgeries, psychological testing....Must admit I've never felt better in my life than I do now nearly six months after my unusual ovaries with huge tumor had to be removed. I'm just on an estrogen patch now, thyroid and except for the anguish of trying to get the reality of my health picture in focus I feel great. This last oopherectomy surgery seemed so very curative for me oddly-....now if only I could shake the back problem I got from a stupid accident a couple years ago! Love Human on ERT and Thyroid.

[maxkwak]

Thank you for the link, CC! I'll read through it tomorrow. I'm also reassured in an odd sort of way that I'm not the only one who couldn't tolerate the patch. It gave me a terrible headache. Since both of my parents died of cancer, concern that the hormones might make me more susceptible to the disease helped me make a decision to not take hormones again. I may change my mind later, but right now that seems to be the appropriate decision.

So, what has 30 years without hormones been like? First the good stuff: I look about 10 years younger than my actual age, and the endo said that was one side effect of low hormones (wrinkles are finer and shallower than someone with normal hormones, he said). Another "benefit" is that I haven't needed to shave more than once or twice a week for most of my life. That has been convenient, but it's changing as I'm getting older. Although I shave every couple of days now, my beard is very scant. In fact, I've been trying to grow a beard since the New Year, but it's not very effective without hormones. Without facial hair, I look like my mother. With facial hair now, I seem to look more like my mother after menopause.

Of course, the two major concerns with low hormones is impaired bone density and heart problems. I had a bone density test a couple of months ago. When I went in for the test, the technician said, "I assume you're a male, ha, ha, ha!" I said, "Well, as a matter of fact, the doctor is still trying to figure that one out, but I definitely have a Y chromosome!" She looked a little puzzled, then said, "I'll list you as a male." Fortunately, my bone density and heart seem to be fine, even without the hormones. I'm not sure about that technician, though...

As I mentioned before, I've been getting menpause symptoms since I've gotten older: hot flashes, major loss of muscle mass, extreme fatigue and feeling down for no reason, but not really depressed. The fatigue and loss of muscle mass were the reasons that I recently saw the endocrinologist. Since I was raised as a male, my most difficult time was puberty when I developed as a female. I bound my chest for years to conceal the full breasts that developed, and baggy pants to conceal wide hips. Genital surgeries, mastectomies and years of hormone treatments helped to establish a male body form, and that hasn't changed back to female, but it sure is sagging in places with the muscle loss (my birthday suit definitely needs ironing...).

When I stopped taking hormones about 30 years ago, my libido ended. I don't have any sex drive, erections, wet dreams (or even dry dreams, for that matter, most of the time), etc. Straight people think I'm gay because I've never married and gay people just think I'm odd because I don't have sex. In our sex-crazed culture, some people might get depressed over such a condition, but I'm not at all. In fact, I'm a pretty happy and outgoing person, when I'm not feeling like a slug from the menopause symptoms.

I'm really sorry that your life has been difficult because of the low hormones. How have you dealt with them?