XXY but being treated as Trans*

[f1r3wire]

Apologies if this is in the wrong section there are several it could have fitted in and I thought here was best.

It's best that I start with some background before the question as it'll make more sense. For a long time I've known that there was something weird with me that I didn't really fit into male or female. As I am mostly physically male I went down the ultra-masculine route for a time, but that didn't feel comfortable. I had some Trans* friends and slowly came to realise that I fitted in so much better with them, I'm not quite like them but very close. So I started transitioning, but went about it in a bit of a bad way. I have enough contacts to get medical check-ups and blood work done on the QT and I'm a qualified medic myself. What my blood guy found out early on was that I have unusual blood and he did a lot of different tests on and one thing that came from that was that I'm XXY. There's also quite a few interesting bits with my body shape and bone structure that's not really male. I've always had small female breasts since puberty and my hormone levels show higher oestrogen than a typical male person should have. But all this medical work has been on the QT though friends and friends of friends so none of it's on my official medical record.

A month or so ago I finally explained to my GP that I was self medicating on hormones, and asked if there was any support available though the NHS for me, but I didn't tell them all the background that I already know. My GP has refereed me to the local gender clinic, which I'm due to go to my first appointment on the 5th of April.

Now I know that the NHS won't do the kind of blood work that's been done by my friend, so they won't find that I'm XXY and I'm already on HRT so they won't have a base hormone level. So I'm wondering if I should tell them what I know about myself which will make my treatment a lot slower, more complicated and may mean that I don't get treated or should I keep quite and let them just think I'm a MtF Transsexual? Which will get me faster but possibly wrong treatment.

Edit: Just realised that I should have mentioned that I don't really feel that I'm a MtF transsexual, I feel that I'm genderqueer, but I don't know how understanding the NHS are to genderqueers.

[rejennyrated]

You should ALWAYS tell a doctor treating you any relevant information you may have about your condition.

I was undiagnosed until years after my treatment - I am not XXY but I do have a number of the traits you describe particularly the elevated estrogen levels. I am needle phobic and for that reason did not undergo blood tests - although I did have a DNA sequence test which revealed the abnormality.

Some while after I had been diagnosed I relented and allowed my doctor to do bloods, which revealed that a standard postop HRT dosage was giving me a blood level of nearly 3000 ng/.dl - which is over 8 times the reccomended level and should by rights have given me a stroke and/or a DVT.

The consequences of not declaring conditions can be FATAL. Do not take that risk please.

Besides it does not follow that your treatment will be slower. There is some overlap between the two conditions. We may be few in number but we do exist. I consider myself now to be a woman with BOTH a trans and an intersex history, and the medical profession are rather better now at understanding that there are grey areas between the conditions into which some of us do fall.

So good luck.

[Northern Jane]

There is also a danger from being known as XXY. From ALL the XXY folk I know on-line (and there are quite  a few!) every one of them was pushed VERY strongly toward massive testosterone therapy - that seems to be the medical practice for XXY. I would be VERY careful to judge the doctor's attitude toward handling Klinefelter syndrome before revealing your past blood work.

[pebbles]

Your condition might have an impact on your endocrinological system and a dosage required for a klienfelters indivdual might be different from a non-intersex MtF so maybe.
However I certainly do hear your concern about telling indivduals in the current DSM you can't be diagnosed as having GID if you have an intersex disorder I'm not sure if this is still the critiera today an offical diagnosis of GID is needed to get a Gender identity certificate to fully confirm you legally in your new role.

I would recommend telling doctors about what your doing and your intersex past however if they intend to formally diagnose you or run additional tests to confirm what your saying you might want to consider becoming obstructive assuming you don't want the offical daignosis of klienfelers syndrome on your medical records.

[f1r3wire]

Thank you for your input, you've given me more to think about certainly.

I'm not too worried about being overdosed with HRT, as they'll take bloods before they'll perscribe anything so they'll have current base levels and won't OD me. So that's not really a worry, my worries are more what Northern Jane said that they'll say that I'm not who I think I am and try and push me to take T which I really don't want to. I've been on T before when I was trying to be more male and it really didn't help me, I just feel horrible trying to be male. What Pebbles says makes a lot of sense, I need to tell them some, but I need to be careful about what they try to label me as becuase I know what I am I just have to be assertive enough to try and get it. I know the NHS can be very hard work if you don't fit into the nice little box of male or female, but I don't and I don't think I should be treated badly because I don't.

[Rosa]

my worries are more what Northern Jane said that they'll say that I'm not who I think I am and try and push me to take T which I really don't want to. I've been on T before when I was trying to be more male and it really didn't help me, I just feel horrible trying to be male.

That's what happened to me.  I was pretty young and raised in a very conservative Christian family and was afraid to tell my doctor that I was attracted to men or that I had gender issues.  I thought that T would make everything OK since the doctor said it would make me feel better, but it didn't.

[pheonix]

Some while after I had been diagnosed I relented and allowed my doctor to do bloods, which revealed that a standard postop HRT dosage was giving me a blood level of nearly 3000 ng/.dl - which is over 8 times the reccomended level and should by rights have given me a stroke and/or a DVT.

The consequences of not declaring conditions can be FATAL. Do not take that risk please.

Jenny is spot on -- declare it because it can radically change the dosages you need.

[Fate]

am xxy too,
been self medicateing for about 6 weeks before seeing a doctor
i just took the doses information off the internet, didnt know it would be diffrent
i also had the same problum with the 1st blood test, the doctor was surprised  that i didnt have any issures yet

[xxUltraModLadyxx]

That's what happened to me.  I was pretty young and raised in a very conservative Christian family and was afraid to tell my doctor that I was attracted to men or that I had gender issues.  I thought that T would make everything OK since the doctor said it would make me feel better, but it didn't.

typical, i had 40 ng/dl of testosterone when i was about 12, and my mom made a big deal out of it, because supposedly that was abnormally low, and of course i was thinking "goody goody, i get to be a girl." so about a year later, and after my mom initially hears about my gender identity, we go back to that endocrinologist i hate. he said i was going to get a shot that day, and i refused it, because i knew about testosterone and estrogen at that age. i ended up finding out there was nothing wrong. it's called, i naturally produce lower amounts of testosterone. when i got tested years later, at 16, it went up to 266 ng/dl. those stupid doctors need to be crowned, because they don't know goddamn about gender beside whats in between the legs. even then, with naturally increased amounts of testosterone. did it change how i felt about my gender? no, it just gave me excessive facial and body hair which i am less than pleased with!

[KarenMiami]

Very interesting account and situation.  First about overdosing etc.  I don't see the issue if as you say your doctor is taking blood work prior to any hormone prescription.  Which is the normal procedure.  If you self medicate without blood work then I see the OD issue but your not proposing that. 

So in essence for pure HRT treatment it is not necessary in my opinion to tell this doctor about your genetic condition.  He may enquire if you are self medicating or ask other questions if your hormone levels on your first blood test come back with say elevated estrogen levels.  But whether he knows the cause of the elevation or not will not change the course of treatment in respect of optimum hormone dosage.  That will be based on your existing base serum levels.

As for other medical issues in respect of your endocrine system I would seek out a top endo.  You should be checking your sodium levels, thyroid function etc for a complete analysis of "your" system.  The complexity of all gender related genetic conditions on the endocrine system is complex and sadly not well understood by most doctors.   Medical text books say if you have this then this is what happens.  When it comes to complex interactions within the body due to an abnormal genetic condition the resulting endocrinological effects are more often then not far from cookie cutter.  They can follow standard median expectations for each of the genetic conditions or they may not.  Physical outcomes and effects can be very different from individual to individual.  This is why you must be seen to by a specialist in this field in my opinion.   But for your privacy and if you can afford it.  I would do this also on the QT and use your GP for the process of going through your transition under your National Health system.

Just some thoughts on your subject.  And good luck to you.  Your keeping your genetic condition private is your right.  Who you tell is completely up to YOU.   I support you 1,000% on this.