XXY MTFs [Archive] - Intersex Community Forums

Kaitlyn

03-02-10, 09:17 PM

Hi, I'm new here. I'm trying to figure out how being XXY and also transitioning to female go together if they do at all. I found out last year that I am XXY. I've always had some of the "typical" physcial traits like, long arms and legs, wide hips, slight breast growth, and no body hair or adams apple. I also can't have kids. Although I did grow facial hair. Since I had facial hair, height and a normal voice I could wear baggy clothes and not stand out much. Doctors never really said too much about it but I didn't really see doctors growing up in a poor and neglectful family.

Well ever since my first memories I always thought I was a girl and any male features just seemed strange and I could never get used to male body parts. I never knew I was intersexed but as soon as I heard about transsexuals I have always identified as one. I was too scared to transition until I finally broke down and had to do it at 20. I just couldn't keep up the act any more. Well I went to see a doctor that has experience with transsexuals and intersexed people. He gave me an examination before prescribing hormones and wanted me to get my chromosomes tested. That was when I found out that I'm XXY.

So now here I am XXY transitioning to female. I know most people XXY take testosterone and consider themselves full males. So I was wondering if there are different subtypes of XXY? Is there any relation to my intersex condition and transsexuality or do I just happen to have both? Technically I'm not sure that I can even be transsexual since I'm intersexed. I'm treated as transsexual though since I was raised male and am transitioning to female. Since people XXY are considered males I guess that I am both? I remember reading that doctors are starting to rethink XXY as to whether they are automatically considered males or not. To further complicate things I consider myself lesbian if that makes a difference. So I am so confused about what exactly I am or if I am a rare coincidence.

If anyone Knows any information about XXYs that transitioned to female that would be great. Also if you know of any research about it or anything it would help a lot.

Thanks a lot!

Kaitlyn

petra

03-03-10, 01:27 AM

Hi Kaitlyn,

I am new here, also. I am XXY, but I see myself as primarily male, with a female side. I only recently resumed testosterone treatment and it has helped me greatly.

This is not to say that it is the course for you. You are what your mind (and heart) say you are. There are XXYers who have, or are in the process, of transitioning. There are those who are quite comfortable letting their female side express herself, or not as the spirit moves them.

I still don't know all the rules as they pertain to mentioning names, but someone will be along to expound further on your topic.

Don't let any doctors try to tell you "They know best," or try to pigeonhole you. You are you; you are unique; you are NOT strange or weird.

Welcome!

---Petra---

notodd

03-03-10, 05:40 AM

Well that's really interesting. I'm xxy and don't think I'm particularly male, although I live as one.

When I was 20ish, I went down the route of TS too. I didn't know anything about intersex until about 5 years ago. (I'm 51 now). I just thought I was odd. I did get an adam's apple, long arms and legs, female features and no facial or body hair, but I came to the conclusion that I didn't look female enough, so have lived as a male to try and fit in.

Although offered it, I never went down the route of testosterone, because I don't feel male. I guess I'm a blend of the two. There seems to be no direct link to being xxy and male /female, it's what you feel inside that counts. You are not alone in your confusion.

As far as I know, there is no separate programme for intersex transsexuals, so you would have to be on the normal system and if you go down that route, think of it as a gift and be glad that you don't have the normal male features of small hips, big chest and large muscles, that would make you stand out in a crowd.

Jon.

Aseras

03-03-10, 12:40 PM

You are whatever you think you are. In reality, being intersex makes transitioning MUCH more difficult and rasies many more problems, especially real medical issues than can arise.

The real issues is to be sure you know who you are and what you are doing, not becuase of a label or what anyone else thinks.

Kailana

03-03-10, 08:21 PM

Kaitlyn welcome to BLO

As to your question about knowing others who are XXY and reassigning(I prefer that word over Transitioning).
There was a XXY in the news this last summer I believe, you might be able to find links in "in The News" forum. If not try OII. some recent posts from OII on XXY,

the 2nd one is titled "variant karyotype in the transgender community" I kind of hate seeing anyone with an intersex conditon lumped into the TG or TS classification but doctors don't really care what an intersex person thinks, seriously as far as they are concerned once you have been assigned a sex, ie at birth or later by surgery that is what you are and if anyone challenges thier assumptions then that person is TS/TG. Anyways it might help share some opinions on others. incomplete article the further link doesn't work anymore.

http://intersexnews.blogspot.com/search?q=XXY

also think there was some videos somewhere I might be able to find them later, right now I didn't notice any within my on favorited links.

Kaitlyn

03-03-10, 09:36 PM

Kailana

03-04-10, 01:42 AM

ok, here is the quick simple truth. Doctor's and psychiatrist for the most part, ie most of them, though not all really don't give a damn if you are intersex or not. As long as you were raised male and are reassigning then most of them will treat you as a transsexual. By the DSM-4, and the new DSM-5, due to have an intersex condition: You would be GIDNOS just as I am. Meaning we are not exactly GID ie a normal biological male transsitioning to Female, but are recognized as an intersexed male reassigning female.

I believe someone mentioned that sometimes the intersex condition can interfere with reassigning. Typically that really only happens if there has been previous surgery ie lots of scar tissue from previous surgeries due to being reconstructed male, or from having less available tissue due to less stature of development of the penile skin. But if you have enough and don't have scarring from previous surgeries there shouldn't be any problems with Gender Reassignment Surgeries, Or SRS whichever term you prefer using.

Now years ago, if someone had an intersexed condition they were ruled out from meeting a transsexual diagnosis by the HBSoC, and for some intersex people they did not need to meet any standards. These days it appears sort of variable, some are treated better then others and often it is because doctors are treating the patient rather then treating the condition. Meaning if you have descent doctors they won't even bother messing around with a persons mental stability by making them jump through the hoops that were set up for treatment protocols for a biological normal male or female. Unfortunately these days, most medical and psychiatric professionals will expect a person regardless of having a intersex condition of following the HBSoC guidelines.

Honestly, by the DSM-4, or DSM-5 your GIDNOS, Gender Identity Disorder Not Otherwise Stated. <--that is what the NOS means, and is considered a subcategory underneath GID.

Now from a more personal perspective ie mine: GIDNOS is a pathetic attempt by the APA to label Intersex people who reject the assignment ie forced gender stereotype that they believe are required to fit into society. OK that is my opinion and I believe that some of us, because of our previous treatment by doctors end up rejecting our surgically assigned gender due to years of medical neglect and medical abuse caused by archaic medical standards used on helpless, defenseless children.

If you want to be accurate to help others understand then just make it simple and say your GIDNOS, it is appropriate by clinical standards. or you can be a little more rebelous and just tell the entire medical community they are all quacks and your just an intersex female that happens to be chromosomally XXY.

Just some simple advice from another Intersex Female that supposedly is chromosomally XY/XO with CAH, who understands there is much more going on then just being XY/XO.

The Female Eunuch

03-04-10, 08:41 PM

Hi Kaitlyn,

I'm in a similar situation to you in that I am intersexed, was raised as male, and now live as female.

I'm kind of confused though. I understand that if you are intersexed then you technically can't be transsexual. I still have to follow the Harry Benjamin Standards of Care and still have been diagnosed with GID.

As kaliana wrote, the official diagnosis is Gender Identity Disorder Not Otherwise Stated. This includes intersex transitioners, but also includes people with psychological conditions that make them want to only partially change their physical sex, or have only intermittent transsexual desires. The psychologist I went to told me that the reason we were put in that category was because it used to be thought an intersex person living as male who wanted to switch to living as female was just lacking in testosterone, and would change his mind if given enough testosterone. He said that psychiatrists no longer believe that. If he's right, then we were actually put in that category to give us less rights than normal transsexuals, rather than more rights, and it ias actually a good thing that we are no longer treated differently.

Is it really just a coincidence that I am XXY and transitioning like they make it seem? Does the XXY mean nothing since I'm transitioning like they say?

I suspect it's not a coincidence for you, and I suspect it's not a coincidence for me either. But I actually don't see any harm in treating us the same as non-intersexed transsexuals, even though we are different. If female is the right gender for you, you should pass the psychological tests. Admittedly, I didn't get sent to a second psychiatrist or a social worker, because my endocrinologist and surgeon decided it was obvious enough to them that I would pass those tests and didn't need the help of those people. But I had always assumed that I would be sent to see those people, and that I would pass their tests.

I'm also uncomfortable calling myself intersexed since people see me as just a transsexual. I don't want to confuse people into thinking transsexual=intersex because I started off mostly male to mostly female. I don't want to cause any problems or mix people up.

I would say that you are intersexed, but you don't need to mention that you're intersex if doing so is only making people more confused.

cheers,
Caroline

Kaitlyn

03-04-10, 11:05 PM

Ok thanks, I guess that I should should just let them ignore the XXY if it will only cause problems and there aren't medical differences. Honestly though I never felt like I quite fit in with most transsexuals. Most seem to obsess over their clothing and the changes from hormones. I really don't care what I wear as long as it is androgynous to slight femme side. The clothes don't define me at all, I just want to wear what looks good on me that isn't too girly. I have never paid much attention to hormone effects, it was like what happened happened and it felt right. Honestly I feel more androgynous mentally, maybe 70% female, 30% male. It's just any male features or parts feel really wrong. Like my mind can't comprehend why there is a penis there and I never get used to them. If there was a third gender option socially acceptable I would pick that, especially since I'm just attracted to girls anyways. Since there isn't and I feel my body should be female and I lean female mentally I just go with that. I really don't feel like sticking out and fighting everyone to be my own gender.

I also have no idea how so many of them made it to 40+ years, were married and had kids. I'm infertile and it is really hard on me since I have no family and love kids. I have never been able to have a long relationship because it just felt so bizarre using those parts even though they were normal sized. Plus I never could feel much sensation and now wonder if I was operated on as an infant since I do have some scars. I can't ask my parents about that. All I know is I was supposed to be a girl, they had a name picked out and everything. Plus my birth certificate was 2 weeks after I was born which I thought was weird. I guess it's just speculation though, probably no way to know for sure. I have never heard of someone assigned male though in an operation. It always seems to be the other way around since it's easier to make a vagina. I don't know...I guess I'll never know the truth and will just keep going the way I have, saving up money for SRS and not worry about it.

They're good people and I can also relate in other ways though. Plus I think everyone has the right to be any gender they feel like they are. Even non-intersexed people are in different places on the male/female spectrum.

Kailana

03-04-10, 11:59 PM

Kaitlyn almost all XXY are assigned male as that is what most look like. Now I will probably get yelled at by some XXY'er lol , but occasionally there will be some ambiguity with an XXY, it is just not normally seen at birth. Most issues with XXY's occur at puberty not at birth, but like most conditions there is always some variation.

Now since you mentioned the whole overdoing it lol, ok lots of the TG and TS seem to go that route, I call them the uberfemales, ie superfemales. Not to be judging them, but many fact is most do indeed overdue it, sometimes I think they are doing exactly what they were doing as men, overcompensating ie acting super male and once they finally can't stand it anymore do a complete flip and end up overdoing it while acting female.

Fact is alot of Intersex people who reassign just don't even bother going to the extremes that a transsexual would. I am perfectly happy in jeans and sneakers, well technically I wear sneakers because I can walk in them. Hmm makes perfectly good sense to me, why would I go and buy tons of shoes that I can actually wear? Since I have no fashion sense I tone down just about everything i do, and yes I do wear skirts and dresses but they are all simple things and I wear when I feel like it, not when someone else expects it. hmm I think I must simply know alot of women. Oh wait I live in a small town somewhat rural setting? hmm could be my gender identity really is based off of alot of the women I knew and grew up around. some pretty normal girls and moms who did't dress up all that much.

Ya know maybe I should be like my sister, and only wear athletic clothing? hmm sports bra running tights and sneakers? Wow I wouldn't expect too many Transsexuals to follow my sisters clothing habits.

Sorry for allthe hoopla there Kaitlyn. seriously just be yourself, act as you want, be you and who gives a damn what others expect or see or judge how you are. Be happy always it is a whole lot funner being happy then worrying about what others think.

Kaitlyn

03-05-10, 10:17 AM

Aseras

03-05-10, 12:18 PM

What type of HRT are you on Kaitlyn? The various potency of each kind can have a strong effect on your emotional state as well as the stability of it. Orals don't seem to cause nearly as much of an issue or shock to the system as non orals. Injectables seem to be the ones that cause the most dramatic changes Both in development and emotions initally.

Stable and non stable hormones levels have a HUGE effect on emotions. Estradiol tends to magnify them and testosterone numbs them. If your estradiol levels are high or too high all the time, that's a good reason for emotional problems like crying all the time. If they are unstable and fluctuating it's a big reason for bitchiness, just like PMS.

Kaitlyn

03-05-10, 01:29 PM

I also take more estrogen then most of them. I take 10 mg of Estradiol a day while many of them are only taking like 4 or 6 mg of pills too. My doctor doesn't check estrogen levels, he says I'm safe taking a higher dose based on that I'm young and I guess kind of large at 6 feet. He checks testosterone though. So that wouldn't explain it either. So I don't know either being XY taking estrogen makes you more emotional or maybe they are exaggerating to seem more feminine. It seems like if you are crying all the time for no reason and in such pain that something is wrong. I would go on antidepressants or something lol.

Aseras

03-05-10, 03:34 PM

10mg oral of estradiol daily is just ridiculous. First you are going to have issues, second it's a huge waste of money. A woman only makes 500mcg, or .5mg per day PEAK in the cycle for maybe a week per month. Taking an Oral estradiol is convenient but a poor choice for HRT really as 80% or more is lost to digestion and the first pass of the liver. The results is you get maybe 20% bioavailable estradiol BUT the other 80% is convert to estrone by the liver ( estrogens metabolites are weaker estrogens ) so in essence you are saturating your body with a much weaker estrogen, estrone so the more potent estradiol that you do get in cannot bind to the receptors and work. Worse still at that dose your bodies reaction is going to be to pump out a ridiculous level of SHBG to contain all the excess hormones, as well as clotting factors. What that mean is the SHBG is going to bind up everything and it will be useless, except to create a severe load on your liver and the rest of your body. You might think you can handle it while you are young, but it is causing problems and the damage will add up.

Have your dr check your E1- estrone, E2 estradiol and SHBG. It will be severely skewed on orals estrone will be 4-6 times higher than estradiol. On non orals it will look exactly like a normal woman's levels. estrone will be 1/4 the estradiol levels.

If you are really serious about development, stop killing yourself on orals, and get onto a non oral hormone. Injectables are cheap, but you have to be willing and able to do them. Patches and gels are great too if you can handle their quirks and get the dose right.

The real goal is to have all your blood work come back in female levels. If you do it right it will all sort out, and you won't need an antiandrogen or some crazy doses.

Kaitlyn

03-05-10, 04:34 PM

He says there is no need to check estrogen, he's just worried about testosterone staying low and checks for tumors and so on. He's just a family practice doctor that is the only doctor within two hours of me that excepts "transsexuals" since that is what I'm considered since XXY is supposed to be male. I'm moving in a couple of weeks to a less conservative area that has experienced endocrinologists. Hopefully they can straighten it out.

I have only heard of testosterone coming in an injection. Do the levels stay even and can you inject yourself at home? I was never offered a choice he just prescribed pills. I really wouldn't trust gels giving the right dose. I guess a patch would be ok if it could stay on and didn't get in the way of things. I've always thought it was strange that sticking a little patch on your skin would do much of anything but I guess that it must work.

Aseras

03-05-10, 05:52 PM

You need to check the estrogen, otherwise you have no idea if you are getting the proper dose. If you get that dose right, there's no need to worry about testosterone.

Testosterone comes in the same preparations, injectables, patches, pellets and gels. The injectables are designed to stay level. Different forms and different carrier oils are used to determine the speed they are absorbed and released.

Transdermals work by absorbing through the skin directly into the bloodstream, also bypassing the first pass effect of the liver. The skin also "buffers" as it takes time to absorb so there's a stable release there as well, but that also means you may need several applications of a gel or several patches at a time to acheive a good stable dose and level in your blood. This is called dose titration and every doctor should be doing it for you.

It would also be a very good idea for your doctor to do a comprehensive metabolic blood work panel on you to check your liver function. That high a dose of estradiol can and will cause problems slowly over time. Most drug reactions are dose and time dependent.

There's a good site here about testosterone and it's the same with estrogens, just substitue the word and the dose accordingly. It can explain thing much better than I can.

http://www.ftmguide.org/ttypes.html

Kaitlyn

03-05-10, 07:50 PM

Ok, thank you. I'll ask about the other forms. I might be able to talk him into checking estrogen but then it probably wouldn't still be covered by my insurance. Why they do that I don't know, even if you aren't intersexed or transsexual men and women have both estrogen and testosterone.

Kailana

03-06-10, 02:26 AM

The hormones don't even seem to have the same effects for me as them. They talk about crying all the time for no reason. I haven't cried in a year on HRT, only choked up a little with really bad things that happened like when my niece was paralyzed. Then they always say their breasts hurt so much they need pain killers and can't even let their shirts rub again them. Mine are larger then pretty much all of them at a size B, longer then average HRT and have never felt the slightest pain. Even if I actually went to hit them it would be a little sore but thats it. I wonder if they make up all these effects because they think women are supposed to be so emotional and sensitive or it effects XY people different. I've at times found it slightly offensive, most women don't cry all the time for no reason. Oh well I guess I fit in better in the intersex community after all.

Ok, I so couldn't help not posting in response to this one post Kaitlyn:

I have only had one issue with breast tenderness and that was due to a seat belt just rubbing the same spot over and over. Other then that, I don't really have much feeling at all.

Now some possibilities:
1. You have a high tolerance for pain.
2. "They" as you say are overdoing it.
3. Everyone just happens to react differently to different things. Which is probably the most likely.
4. Your overdoing it with the amount your taking. Think Aseras wrote a great comment about taking too much and blocking affects.

I Also agree with Aseras on that issue. I know a transsexual who was also on the same extremely high dosage and smoked, and that can cause some serious health risks. 10 MG oral a day is alot for anyone. You really should talk to your doctor, you only got one liver and you don't want to abuse it, once its gone, it is hard to replace.

Kaitlyn

03-06-10, 04:41 AM

He seems to be doing some kind of high estrogen low anti-androgen treatment plan. I'm only on 50 mg once daily of Spyronolactone and he said that was to help and because I had high blood pressure. I have no idea how much he knows, like I said he is just a family doctor, that is the only one within two hours that would accept me as a patient. I'm getting a new one after the appointment this week since I'm moving anyways.

fraulein_Maria

03-09-10, 03:01 AM

10mg oral of estradiol daily is just ridiculous.

>>>> absolutely agree. her doc is OD'ing her on the stuff and its no wonder she's crying. That said you need to wean back down slowly or you will experience menopausal symptoms and they are not fun either. <<<

First you are going to have issues, second it's a huge waste of money. A woman only makes 500mcg, or .5mg per day PEAK in the cycle for maybe a week per month. Taking an Oral estradiol is convenient but a poor choice for HRT really as 80% or more is lost to digestion and the first pass of the liver. The results is you get maybe 20% bioavailable estradiol

>>> lets give a big cheer to the patch which will not destroy your liver. <<<

The real goal is to have all your blood work come back in female levels. If you do it right it will all sort out, and you won't need an antiandrogen or some crazy doses.

>>> which leads to something important that your doc doesn't seem to understand....

unlike an MTF "transexual" you have 2 XX chromosomes which DOES make a difference. a positive one in your striving for femaleness. You just WON'T need the high levels of anti-androgens.... because your body is not much sensitive to them in the first place. You just don't need as high a dose of estrogen to feminize. so this doc is killing your liver and making you miserable because he refuses to take your second X into account. <<<

fraulein_Maria

03-09-10, 03:04 AM

[QUOTE=Kaitlyn;22731]He seems to be doing some kind of high estrogen low anti-androgen treatment plan. I'm only on 50 mg once daily of Spyronolactone and he said that was to help and because I had high blood pressure.

>>>> an estrogen level that high can raise your BP through the roof and put you in danger of stroke. lower the estrogen gradually and your BP should come down too. <<<

Kaitlyn

03-09-10, 05:17 PM

I was saying that I haven't had any emotional problems and never cry. I actually feel way better than before I got on HRT. I was constantly depressed, tired and anxious before.

My blood pressure has always been high, I've always thought it was because doctors made me nervous. I'm only 21 though so it's just high for my age I guess. Don't you have to be at least twice my age before you have to worry about strokes?

He has said that the only difference with me being XXY is that I can be on the low dose of spyro only once a day. He doesn't check estrogen levels, he says that my liver is good. I'm so nervous at doctors I forget to ask things and don't like to be there longer then I have to. I had several bad experiences with them as a child.

The Female Eunuch

03-09-10, 06:48 PM

My blood pressure has always been high, I've always thought it was because doctors made me nervous. I'm only 21 though so it's just high for my age I guess. Don't you have to be at least twice my age before you have to worry about strokes?

I don't know about strokes, but high blood pressure can cause plenty of other problems, such as kidney damage and blindness. It has no symptoms until the damage is done.

Do you actually know that your blood pressure is only high for your age, rather than high for any age?

cheers,
Caroline

Aseras

03-09-10, 07:17 PM

Have your dr check your bp at the beginning and end of your appt. I have setious dr anxiety ( bet many here do ) and mine is usually quite high a first but calms down to normal or even lower by the end of the appt. It also varies by dr too.

Kaitlyn

03-09-10, 08:18 PM

He just said it was high for my age. Everyone has said that my whole life every time I got it, they always include the for your age. So it's not really bad. I never remember what numbers they say and don't know the difference anyways.

Kaitlyn

03-10-10, 08:49 PM

I got my blood pressure checked today, it was 130/98. That was at the doctor so I guess it is probably lower since I was nervous. Also he said that my testosterone level was .02 last time I had it checked 3.5 months ago, but it was whatever system of measuring that Carillion uses. He still said that estrogen didn't matter and since I'm moving to take it up with the next doctor.

Kaitlyn

03-10-10, 10:30 PM

I think I figured out what the T levels are. I think it was measured in ng/ml instead of ng/dl. So, 1 ng/dL = 1/100 = 0.01 ng/mL. That would still only make my T level 2 ng/dL. That seems really low still, I guess it's from all the estrogen and being XXY since I'm on barely any Spyro.

Aseras

03-10-10, 11:59 PM

130/98 it pretty indicative of stress. Mine will be 130-150 / 85-90 when I'm stressing and in full on white coat. After I chill out my bp comes down to 110-120 / 75-85. Again it depends on the situation the dr and everything. I am usually soaking wet for dr visits too from sweating.

Spiro works by blocking the enzyme that creates T. However it causes a dramatic rise in the precursor androstenidone. Which is also an androgen but weaker.

If your E levels are high enough there is no demand by the body to produce T. So there will be very little made in the testes. Only adrenal production which is not under feedback control. Your levels are so low you are inhibiting this too. That can make you feel even worse. You do need some T generally to feel ok.

Anyways I hope your new dr helps you out.

fraulein_Maria

03-12-10, 06:13 AM

I was saying that I haven't had any emotional problems and never cry. I actually feel way better than before I got on HRT. I was constantly depressed, tired and anxious before.

>>> my apologese, i mis-understood. <<<

My blood pressure has always been high, I've always thought it was because doctors made me nervous.

>>> that's possible. but if you've been treated with alot of T like other XXY'ers in adolescence, that's another explanation. <<<

I'm only 21 though so it's just high for my age I guess. Don't you have to be at least twice my age before you have to worry about strokes?

>>>> :umno: there is a BLO'er that had a stroke @<hidden> 14 ( just fourteen ) years of age from parents OD'ing her on T. The same can happen with an E OD. Hormones are not candy and it upsets me that doctors often treat them that way. <<<

He has said that the only difference with me being XXY is that I can be on the low dose of spyro only once a day. He doesn't check estrogen levels, he says that my liver is good. I'm so nervous at doctors I forget to ask things and don't like to be there longer then I have to. I had several bad experiences with them as a child.

>>> welcome to the club. one of the first things we learn in this club is that most doctors that treat us are CLUELESS and GUESSING about how to treat us. one AIS gal caught her doc googling for info, not checking any books in his office. THEREFORE, though it may seem a royal pain in the ass to find out more than your doctor knows... its YOU that will suffer if you don't. <<<

fraulein_Maria

03-12-10, 06:18 AM

I got my blood pressure checked today, it was 130/98.

>>> people with a bottom number over 90 usually get put on diuretics ( if there over-weight ) or high blood pressure meds if they are thin. If your not on either, its mal practice. its the upper number that varies with nervousness, not the lower. <<<

He still said that estrogen didn't matter and since I'm moving to take it up with the next doctor.

>>> please find another doc. it sounds llike this one is trying to kill you. <<<

fraulein_Maria

03-12-10, 06:25 AM

[QUOTE=Aseras;22762]130/98 it pretty indicative of stress. Mine will be 130-150 / 85-90 when I'm stressing and in full on white coat. After I chill out my bp comes down to 110-120 / 75-85. Again it depends on the situation the dr and everything. I am usually soaking wet for dr visits too from sweating.

>>> vis a vis the tests you told me about? um, its related. you may not be an accurate frame of reference for BP ( its waaaaay too high even when your calm, better get it under control before you burst a blood vessel )

i know you hate doctors, but i want you live.

Aseras

03-12-10, 09:42 AM

Yeah I know I'm a mess. Everyone in my family has high blood pressure and other issues too I bet are related.

I'm going to see my *good* doctor today, get to tell her how much the endo's screwed me up and "tried" to kill me. Incidentally my blood work may be way screwed up even more because my prolactin is way high again. Guess how I know...?

Kaitlyn

03-12-10, 01:37 PM

>>> Originally Posted by Kaitlyn View Post
I got my blood pressure checked today, it was 130/98.

>>> people with a bottom number over 90 usually get put on diuretics ( if there over-weight ) or high blood pressure meds if they are thin. If your not on either, its mal practice. its the upper number that varies with nervousness, not the lower. <<<

He still said that estrogen didn't matter and since I'm moving to take it up with the next doctor. <<<

Well I think I am on a diuretic, isn't that what Spyronolactone is? I am overweight, but I don't look it because I'm tall.

I just noticed that you are from Peterborough, NH. I was born there, I lived in Kheene and Rindge. I used to think it was a big city growing up until I moved lol.

louisev

03-13-10, 05:58 PM

so what is southern New Hampshire intersex-central or something? Is it in the water?

Kaitlyn

03-13-10, 06:44 PM

I also used to live in Alexandria, VA lol but only for a year. I was living there on 9/11 and went to see the Pentagon.

louisev

03-13-10, 10:27 PM

I also used to live in Alexandria, VA lol but only for a year. I was living there on 9/11 and went to see the Pentagon.

Dang ! this is a very small world. And Fraulein Maria just zipped through recently and I missed meeting up. Whereabouts do you live now Kaitlyn?

fraulein_Maria

03-14-10, 11:18 AM

Well I think I am on a diuretic, isn't that what Spyronolactone is?

>>> yes, but if its a dose as low as you say, he's using it as an anti-androgen not as a diuretic. <<<

I am overweight, but I don't look it because I'm tall.

>>> losing the weight will help you presssure in the long run, but a higher spiro dose would be better in the short... especially if your foolish enough ( i know that's strong and i'm sorry) to keep taking that high of an E dose. I'm going to assume your a bright gal, so please go to the library (or find it on-line) "the nurses drug handbook". unlike the PDR it is written for fast reference, NOT Dupont employees. Look up estrogens and see what is considered a usual dose. You will see that only 4mgs is considered a maximum high dosage. higher doses are associated with

high blood pressure and stroke.

and this in a YOUNG population taking it for BC purposes.

They stopped that nonsense because KIDS where dropping dead.

It takes alot of E to totally surpress ovaries... not nearly as much to just feminize and that includes people with Y chromosomes. AIS'ers don't need much (if any) if they keep there testis. If they don't, they only go higher after a lifetime on E (which i think is a mistake, but that's another story).

If you were an XY MtF, a high initial dose (but still "only" 4) would make sense, but that height is unsustainable without heavey damage.

but since your an XXY, you would require LESS to feminize.....

So my theory that your doctor secretly hates Mtf's and is trying to kill you, stands. <<<

I just noticed that you are from Peterborough, NH. I was born there, I lived in Kheene and Rindge. I used to think it was a big city growing up until I moved lol.

>>> lol. I usually attend Quaker meeting in Jaffrey, but i drop in to the UU in Peterborough to see my neighbors and friends from time to time. :)

Keene's a nice town. Rindge is fundi land. Say high to Keith for me will ya? he's the guy who used to raise alpaca's :) <<<

Kaitlyn

03-15-10, 12:31 PM

Well I'm moving to Norfolk, VA. I spent like 9 years in Rindge. I miss it but since my grandfather died there has been no reason to go back. Besides with my medical condition I just couldn't get treatment without traveling a ridiculous amount.

Aseras

03-16-10, 11:37 AM

Besides with my medical condition I just couldn't get treatment without traveling a ridiculous amount.

What's a ridiculous amount for travel? Right now I drive 230 miles one way to see the endo's at Shands. It's a 4 hour trip for me. I spend about $200 on tolls, gas and a hotel just to go waste my day there. I did it 4 times in the last 2 months. My good dr is 100 miles away. Both of them cost me a day at work to visit. I don't mind the travel one bit. I'd go anywhere to find a good competent doctor.

Kaitlyn

03-16-10, 11:53 AM

Well I can't drive first of all so getting someone to take me that far wouldn't happen. Even if I could I would want to live much closer.

fraulein_Maria

03-16-10, 01:07 PM

Well I can't drive first of all so getting someone to take me that far wouldn't happen. Even if I could I would want to live much closer.

>>> i'd have absolutely no problem picking you up, and taking you home. You might have to suffer eating KFC or Micky D's if your hungry before we get to dartmouth/hitchock, but afterwards i like to eat at Harlow's :)

"Ask, and ye shall receive" :)

Kaitlyn

03-16-10, 09:02 PM

Well that makes you better then most people. I couldn't even bribe my family to take me any where or help with anything. Now I want KFC, I'm too broke to afford a bucket of chicken though lol. I have to save up money for surgery some how too. I gained 50 pounds in 6 months last year, after I started hrt so I need to lose like 30 pounds. I haven't gained or lost any weight in the last 5 months. It seems impossible on estrogen, I have to diet and exercise to just not gain weight.

fraulein_Maria

03-22-10, 07:01 PM

[QUOTE=Kaitlyn;22856]Well that makes you better then most people.

>>> nah, just most people in fundi-land. the rest of NH is pretty nice. :) <<<

I couldn't even bribe my family to take me any where or help with anything.

>>> i got a family like that too. thank Godde i don't live with them. <<<

Now I want KFC

>>> done :) <<<

I'm too broke to afford a bucket of chicken

>>> you shouldn't eat that much anyway, so how about i pay and we share? :) <<<

04-12-10, 09:43 AM

unlike an MTF "transexual" you have 2 XX chromosomes which DOES make a difference. a positive one in your striving for femaleness. You just WON'T need the high levels of anti-androgens.... because your body is not much sensitive to them in the first place. You just don't need as high a dose of estrogen to feminize. so this doc is killing your liver and making you miserable because he refuses to take your second X into account.
Definitely agree with that Maria,tell me,have you been in touch with Onni lately ?

wally

05-10-10, 06:34 AM

Thanks!

I'm kind of confused though. I understand that if you are intersexed then you technically can't be transsexual. I still have to follow the Harry Benjamin Standards of Care and still have been diagnosed with GID. Apparently if you're XXY you're still considered male. My doctor says it really makes no difference that I'm XXY except that I won't need as much androgen blockers. Since the treatment for XXY is testosterone and I'm going the other way they completely ignore the condition.

Is it really just a coincidence that I am XXY and transitioning like they make it seem? Does the XXY mean nothing since I'm transitioning like they say?

Since I started out thinking I was transsexual before I even knew about intersex conditions and found that I'm XXY I really don't use the label intersexed. The doctors ignore it and I'm treated and called just a regular transsexual. I'm also uncomfortable calling myself intersexed since people see me as just a transsexual. I don't want to confuse people into thinking transsexual=intersex because I started off mostly male to mostly female. I don't want to cause any problems or mix people up. I just want to figure out what exactly I am and if my doctor is really doing the right thing by ignoring any intersex condition. Also am I still subject to the Harry Benjamin SOC? I've met it anyways but I don't want any legal or medical problems if it's not the right SOC for me.

I have a serious interest in this thread because I believe that there is a connection between being xxy and being a transsexual.

I was dx'ed in '76 but was not offered treatment until '02. That treatment was with testosterone because medical experts assumed I was male. I did not argue this point because I had tried unsuccessfully to be a male for more than fifty years.

Shortly after starting on testosterone I began to develop breasts. I was really surprised, even shocked. But it didn't take me any time at all to know that I wanted to keep my breasts. My gp referred me to a psychiatrist at the gender clinic. At first the psychiatrist said that the GID was not related to xxy. I did not agree with him, so I continued to talk as if it was part of the reason for the desire to transition. A year or so later the psychiatrist came back and agreed that there likely was a connection between xxy and GID. This was because he had at least one other client that had the same story as I did.

In my years involved in the trans community in Alberta I've met quite a few others who were intersex or xxy but normally didn't discuss it because they felt that it might have cost them some treatment in the transitioning process. According to the DSM-IV a diagnosis of GID cannot be made if there is a concurrent physical intersex condition (e.g., androgen insensitivity syndrome or congenital adrenal hyperplasia) .