Endo appointment

[JOS]

:-D Well I've had an appointment with an endrocrinologist and I have to say I thought he seemed very receptive.

I was unsure if I was definately CAIS and not exteme PAIS but he is convinced I am CAIS. He was very interested in my observations and was inclined to agree with giving me some testosterone... apparently you can get it in a gel form which gives a much more even release than injections and also a lot more dosage control. Has anyone else got experience of using this?

Anyway still feeling a bit like a pin cushion with all the blood that's been taken lately but already feeling happier that someone is at least listening.... sometimes it feels like you have to keep pushing and pushing, it's a shame that you have to become a squeaky wheel before you get the oil!!
Today it's all good
:-D

[Dianne]

I am glad it went well for you!

I still haven't talked to my Endo about I.S. She thinks I am TS and gives me estrogen and I don't want to screw that up. I have never even had a Karyotype and it has been nearly 34 years since corrective surgery so I don't even know what could be determined at this point. From the facts I have been able to unearth about my beginnings and from my weird puberty, PAIS is most likely but who knows .... it doesn't matter much at this point.

[Kailana]

if your actually complete CAIS, meaning the receptor's for responding to testosterone is not working. Then taking testosterone wont do anything for you at all. Your still not gonna be able to respond to it. Or is there another reason for taking testosterone? that i am unaware of? Libido or something?

I am not an expert or well versed in CAIS, but I do believe i have enough information about it. if it does work for you? Wouldnt that mean that your a high level PAIS on the prader scale?

I appreciate you sharing this information with me/us.

I am curios though, at the same time, Do you identify as male? I would really find that amazing. Im not trying to burst your bubble or anything. I have actually been waiting to meet a CAIS person who identifies as a man. It really would throw another wrench in the so called recommendations doctors have used for years about CAIS women, reassigning as girls. I hope i am not also prying to deeply. I do hope you can understand though, just how interested i am in how you identify yourself.

thanks and best wishes

[JOS]

Well, where to start?
I guess I identify as female... certainly I'm married to a heterosexual male!
As a child I was definately a tomboy and have always found it hard fitting in with girly-girls but that's partly cos I was so much bigger than everyone else... tricky swapping clothes and shoes with the other 8/9year olds when you're already bigger than the teacher... I was 5'6 at 8yrs and already 6'0 by 11yrs...anyway I digress. I must identify as female cos I used to get upset if people mistook me for male! besides all my bits look female! Unless I've always identified as inter?

When I got the second hernia last year and the testicle, that had been forgotton/left behind, was removed (malignant seminoma and all) I felt pretty low and my sex drive dropped... I figured at first that it wasn't too surprising considering everything I was going through (I'd also just been made redundant and we had to sell our house and move...hence how I got the hernia... lifting heavy boxes).

Then I got to reading articles about AIS and different intersex conditions mainly from coming here and hearing about the tough times people here were having. I read about the effects of not having testosterone (thanks to peaceandparty's postings) and wondered if maybe I was PAIS and just no-one told me yet... or the tests hadn't been done properly?

Anyways... still don't know for sure yet, hence all the blood tests etc. but the upshot is that I have heard that CAIS women are lately finding that oestrogen alone may not be enough and I wanted to find out from an expert... don't know yet what my current testosterone levels are... if they're "normal" bag goes that theory!!

Well I'll keep you posted... to be honest I'm not sure if it won't turn out to be some wierd placebo test..... yes rub the cream in and it'll all feel much better
HeHeHe LOL :rolleye11

See this site... I'm referring to third paragraph in section titled "does it do more harm than good"
http://www.medhelp.org/www/ais/32_GDCTOMY.HTM

I also like this site for it's easy to follow explanation but without dumbing down!
http://www.hhmi.org/biointeractive/gendertest/gendertest.swf

Well thaks again... sorry this is a bit of a long messy posting
Jos

[Kailana]

and sorry again for prying, thats kind of what i was wondering, about the use of testosterone, for the waning libido. I sort of felt stumped for a bit. Thanks again for sharing, also for repeating what you have stated in the past. Its actually kind of hard to remember what everyone is, theres so many people coming through the forum all the time.

[JOS]

I don't mind you being interested
I'm actually quite worried now about the fact that I've been taking the oestrogens in tablet form now.... apparently patches are better for your liver but I tried them once and found that my clothes got more treatment that I did.... I must wriggle a lot LOL.

But I wonder if the fact that I still had a testicle (possibly producing testosterone) was I infact 'doubling up' on my dose... I think I'm right that testosterone can get converted into oestrogens...???? I might have got mixed up tho'.... so maybe I'm just on the wrong dose now?

And I don't want you to think I'm sexed obsessed or anything, that was just one difference I noticed but I don't feel quite the same as I did when I was really depressed.... more kind of tired...

sorry self obsessing again... really bad habit, sorry
Jos

[Kailana]

I was just wondering if it was the location of the patches? Alot of people like the patches they are supposed to be safer for your health.
i appreciate you clearing up my confusion.

as for being worried about doubling up? Are you getting your bloodwork checked every 3 months? Those lab tests are for monitoring your health. If there are any problems with taking testosterone, it will show up in your lab work. I wouldnt worry unless you see a large change in them. Your doctors should be looking at those to see how well your doing or if theres any changes in how well your kidneys are working or not working.

[JOS]

The regular (every 3 months) blood tests I'm having are taken by oncology and are checking specifically for tumour markers so I don't think they'll look at hormone levels in those tests.

But the ones taken by the endocrine dept. will.... they rang me today to ask me to make an appointment for a bone density scan. Do you think that's routine cos I'm worried they have the results back and they're bad! They left a message on my phone so I haven't actually spoken to anyone yet.... I don't even know what the signs of osteoporosis are?

The problem is that because my diagnosis was kept from me, I never checked or chased up things like this. I remember being told years ago that the oestrogen was to help prevent osteoporosis but no-one has ever suggested bone density scans before.

Has anyone here had them?.... what are the risks.... I seem to be having loads of scans and x-rays lately.... surely that in it's self carries certain health risks?

[fraulein_Maria]

[QUOTE=JOS;14167]

Anyways... still don't know for sure yet, hence all the blood tests etc. but the upshot is that I have heard that CAIS women are lately finding that oestrogen alone may not be enough and I wanted to find out from an expert

See this site... I'm referring to third paragraph in section titled "does it do more harm than good"
http://www.medhelp.org/www/ais/32_GDCTOMY.HTM

>>> Welcome! :) and thanks for posting this. i was once reemed a new a$$hole for saying almost precisely this. cest la vie

[JOS]

Sorry to be nosey... are you CAIS too?

[fraulein_Maria]

I don't mind you being interested
I'm actually quite worried now about the fact that I've been taking the oestrogens in tablet form now.... apparently patches are better for your liver

>>> yes. the patches have ethynyl estradiol... easily absorbed through the skin, so it by-passes the "first pass" (the digestive tract) through the liver. this means you can take a much lower dose and still have the same effect.
During the "first pass" much of the hormone is treated like a poison (this is true of most drugs aswell) and converted into something that can be easily excreted. this is very stressful to your liver.
Beyond that its good for your liver, its also better for your other tissues aswell. with pills, you get a "see-saw" effect... very high, then very low then very high again. this is not how our bodies are designed to work. our bodies need a steady increase and/or a steady decrease to function properly. that's why both under and over dosing of a hormone will cause nausea. <<<

but I tried them once and found that my clothes got more treatment that I did.... I must wriggle a lot LOL.

>>> lol, indeed. :) perhaps you might want to place the patch on a body part that "wiggles" less? ;) for me, that was my belly. have you tried your upper thigh? <<<

But I wonder if the fact that I still had a testicle (possibly producing testosterone) was I infact 'doubling up' on my dose... I think I'm right that testosterone can get converted into oestrogens...????

>>> 2 related thoughts... one at a time.

first: yes, your testis is making testosterone that is being converted into estrogen.

second: but no, your not doubling up.

How can this be? Your body is using the natural estrogen up first. Your doctor may have decided (and maybe you want to talk to him/her about this) that your liver is not converting enough test. to est. to maintain your feminity or that your remaining testis is not producing enough test. to maintain your bones. so from the doctor's point of view, the pills are SUPPLIMENTING your testis, not replacing them. someone in the Klinefelter's forum posted a very erudite description of the blood levels necessary for each hormone to maintain bone, and i defer to them on the details. <<<

And I don't want you to think I'm sexed obsessed or anything, that was just one difference I noticed but I don't feel quite the same as I did when I was really depressed.... more kind of tired...

>>> no, you do not come off that way. (least not to me) never apologize for enjoying the body you have. It does not surprise me that you feel this way. Since i've been on prednisone (the treatment for CAH which lowers my test. level) i find myself more prone to depression. in addition to being the hormone mainly responsible for "drive" (both sexual and initiative) and aggression, it also affects (positively) our sense of well-being.
in my case (in the case of all CAH i dare say) that sense of well-being is at best exaggerated, at worst illusionary, but that's mainly true because we suffer from an EXCESS. You are probably truely deficient.
Remember, when doctors speak of your tissues being androgen insensitive, they are NOT including one very important tissue.... your brain. fatty tissues (brain, nerves, gonads, skin) do not need receptors for hormones to respond to them. think of receptors as doors. Your cells are missing the doors (or in PAIS, the locks on the doors are broken so test. can't get in) marked "androgens". BUT, fatty tissue doesn't need doors... like ghosts, hormones pass right through the walls! :) <<<

sorry self obsessing again... really bad habit, sorry
Jos

>>> no hon. its ok. its not obsessing. we need to talk about these things with SOMEONE... preferably with someone who's been there. Though AIS'ers and CAH's are physical opposites, what we have in common is how society and the doctors treat us... reason enough to hang together :) <<<

[fraulein_Maria]

Sorry to be nosey... are you CAIS too?

>>> lol. no hon. I'm CAH. specifically, 3BHSD. But when you have CAIS's for friends (not to mention anatomy phd's, and my own nursing background) you pick up a thing or 2 ;)

[JOS]

Your post was soooooo great... it's the sort of response I'd been hoping the endocrineologist would give... it seems a lot clearer now.
I read that it's not known what the brain effects are but until you posted that I couldn't work out how that would work if the receptors are non functioning.
I have read on another site...

http://www.mindpowernews.com/BrainSexIll.htm

... I don't know how scientific it was either. But it says that men and womens brains have a 'sex' too and that this can make you more prone to certain diseases.... do you think that might mean then that since I would have had high levels of testosterone (I was making it just not registering it) that I'd have a male brain and so therefore at risk of parkinsons? or am I making a leap?

Thank you again for your post... it really did help a lot:-D

[fraulein_Maria]

I have read on another site...

http://www.mindpowernews.com/BrainSexIll.htm

>>> its quite simplistic, but how can a 30 second sound bite not be? <<<

... I don't know how scientific it was either.

>>> what they say is true... BUT. gotta watch out for those half truths. for instance, while i do indeed have a masculinized brain, it does not follow that i am therefore a pre-op FtM trans. or a lesbian (no to the former, yes to the latter.) Most CAH XX'ers aren't. My sis doesn't have CAH, isn't FtM, or a lesbian; but i've never met a woman with more balls! ;)

Back to being serious though. If your brain is masculinized by AIS (possible) please know that this does not make you less female or less hetero. Trust that you are simply a different kind of woman. We come in all shapes and sizes. You've been socialized since birth to be female and even those of us who can't swallow all of it (cause some of its downright wrong for us) have no problem being accepted as women by other women... not because of our appearance ( some of us born XX'ers can't "pass" ;) or our "feminine" behavior (LOL, like i'd ever pass for a lady ;) but because we grow up with a shared set of expectations. PM me if you wanna talk more about that. <<<

But it says that men and womens brains have a 'sex' too and that this can make you more prone to certain diseases....

>>> depends. I and other CAH's are more at risk for diabetes and heart disease thanks to the influence of test. ON OUR BODIES... but the only brain related problems that i know of are pyschiatric, not physical. i won't get parkinson's, but homicidal? without prednisone, could be ;)
I wouldn't be terribly concerned if i were you. Any homicidal thoughts can also be triggered by too much estrogen ;)

[fraulein_Maria]

and the person on the Klinefelter's board with the great info on test. and est. levels for healthy bones is Onnineko.