Klinefelter Syndrome

[Michelle_K]

First off, I have never been told that I am intersex or that I have Klinefelter Syndrome. However, It seems that I would fit the description.
Other than the fact that I am 69 inches tall instead of over 73 inches, everything else seems to fit.
Male genitals, check
Wide hips. check
Narrow shoulders, check
Gynecomastia (Breasts) check, I am a 38B

What else is there? long legs, long arms, Shirt sleeves an inch too short.
someone mentioned my long fingers.
Weak bones - is that why I broke both wrists. but dense enough for screws to hold the wrist plates.
Delayed speech and standing on my own.
Mental conditions like ADHD and autism.
I took algebra in high school, and I still count on my fingers.

I wonder to what extent the female physical characteristics are? Do I have the smaller organs such as the heart and lungs, causing me to have shortness of breath and chest pains. ( my doctor knows about the chest pains).
My first time wearing high heels, was not all wobbly and they fit properly. Wearing women's shoes, I do not have the foot pain like I had with the men's boots.

To find other things, I had to understand what estrogen did to the male body(trans-woman) thin skin, softer skin etc.

All this can be attributed to low testosterone, and the body at puberty defaulting to female characteristics. But is it still in the normal range?

I got tired of being the bearded lady. The way the little girls would stare, you would think they never saw a bearded lady before.

Growing up in the 50's, there was a lot of gay bashing, even from my own father. he once made a statement that he would kill his own son if turned out to be gay. This is from a man that carried a badge and a gun. I also heard statements about holding down a long haired guy and cut their hair.
Hearing that enough, it could probably turn a gay person homophobic.
This was also a time that cross dressing was a crime, and assumed that all cross dressers were gay. Perhaps this led to the idea that any feminine looking guy was gay, and him getting beaten up in the bathroom. Even in grade school.
Michelle

[Michelle_K]

On the other hand While I was growing up, there seems to be some things said that would suggest that I had indeed had sexual corrective surgery as a baby. At one point my father had said I should reimburse him for my hospital expenses when I was born. I knew very well that I was born at home, so at the time his statement made no sense. Another was about the baby dresses, either the photos or I was still wearing dresses as a preteen. My mother's response being that I should have been given the choice of being a girl or boy. Being such a long time ago, I wonder if I really heard that or if my mind made the whole thing up.
The statement that she never put dresses on any of her boys makes me wonder if she did not consider me to be a boy. Each photo has a different dress, They were put away and none of my sisters wore them, and I think they are in a storage trailer. In case you haven't guessed, quite likely I was potty trained while wearing a dress. Another reason for baby dresses, it is easier to change the diaper.
Then the statement, "You are supposed to be a boy, so act like it".(Not you are a boy.) Am I a girl pretending to be a boy.
I considered myself to be a girl that could pee while standing up.
Michelle

[Michelle_K]

About a year ago, I had not even heard about Klinefelter Syndrome. When I first found the website, I went down the symptoms, and pretty much said yes to all of them. Being that I was a smoker, Medicare paid for a CT lung scan. As I also have pectus excavate (sunken chest) I had requested several checks to go with it.
Exophytic cyst is noted along the left kidney. The Doctor mentioned it "A cyst is noted on the left kidney, but it is on the outer surface of the kidney and thus not concerning for kidney problems." Just yesterday I was back to another website, and the cyst may be another symptom.

One would think that a medical doctor would note some problems. I don't think my shirt has been removed for any examination so no doctor would even see any enlargement of the breast tissue or even non normal male nipples. And since I was listed as male, they may see the female shape being due to how skinny I was.
The same for my hernia, It might be small enough that it is not worth mentioning, but put it in the medical records. A different doctor may see it in my records, and assume I had been told about it. I was finally told by a urologist that I have a double hernia. Not one doctor discussed hernia surgery, and I have a large bulge.

Back to my previous thoughts. Is a doctor going to look at my records and see I am listed as transgender female and assume that I am already on HRT. The doctor I have now My first appointment was in January. She mentioned getting me on HRT, but first I needed a blood test. My LDL was low enough, but I was told I needed to raise my HDL.

My intention was to write about my arms being too long. I actually found my cloth ruler and then went to a web site to find what my hands should be. For my height, the width of my hand is between the measurements for male and female. However, the length was way over that of a male. This will give me three problems.
1. gloves are too short, barely covering my palms
2. Jacket sleeves are too short, leaving a gap between the jacket and the gloves.
3. Metal plates in my wrists cool too fast.
I have the same problem with men's shirts and jackets. I didn't even consider that might be the reason I don't enjoy the Minnesota winters. Interesting thought, the wrist is exposed to the weather and by the time my blood gets to the end of my fingers, it is too cold to warm my fingers. Gloves and mittens are easy to make on my sewing machine, not quite enough skill to make a jacket.
Michelle

[Maid Marion]

I discovered that I have two ways to stay warm when sleeping during cold Connecticut winters.

The first is obvious two warm bed sheets.  One above and another below me.  With a thick comforter on top.

The second is to dress warm on top.  But not my bottom.
The mismatch would keep me warm.  But, I'd sweat a lot and water would condense on the windows.
I could run a dehumidifier to fix that.  Humidiers have gotten a lot more energy efficient.
I need to take the old one to the Town Dump.

I also have two small hernias. One on either side. A couple of doctors have looked at it, including a urologist.
No bulge and nobody has talked about surgery aside from when I first got them over a decade ago.
When I took up golf I could feel them a little, but after I while I no longer noticed. I did have my primary care physician check them out.

You should always ask your doctor to check out anything you have concerns about.
They are busy people and can't be expected to notice stuff you don't bring up.
When I was in a rehab ward I wrote a note to one of my Doctors.  He was impressed with how l well I wrote!
I wrote it with my "non dominant" left hand.  I found out that anything I can do with my right hand, I can do with my left!
Marion

[SoupSarah]

@Michelle_K

You are definitely over thinking this.. being intersex has no bearing on your gender. Your biology does not define  what gender you perceive yourself to be. It also has little to no bearing on how a medical professional will treat you regards to transgender issues or transition.
It is very easy to find things on the internet and go 'oh I have that, and yes that too', it is another thing to actually realise that slight variation in a person's body is not the clinically significant result the conditons are describing.

For example, Klinefelter Syndrome (XXY-47), that you are going on about and the gynocomastia.. this is a condition that arises when the boy hits puberty, his breast growth is significant, distressing and not due to any other factors (weight for example) - it usually results in breast reduction surgery and a diagnosis. 95% of XXY boys are infertile, again an early sign of diagnosis.. I suggest that if you have gotten over 5 decades of life a 'normal' puberty behind you and procreated, then XXY-47  is not applicable..

As for surgery scars.. then for XXY individuals they will have those scars under their breasts, they will of been done around the age of 14-16 and as such, you would know about them.. There is usually no reason to touch genitals of anyone XXY-47 as they form functional if a little small. Surgery scars are visible, quite visible. I am intersex (XX47-XY47 chimeric) and had surgery within 24 hours of birth to make me appear more male, more at age 3. The zig-zag scar along my perineum and the 12 stiches around my phallus, obvious to anyone who cared to look. My genetics, however did not make me a girl. The doctors had a 50-50 chance in my case (one in a billion) and made the wrong guess.. and even with this form of extreme intersex state, my endocrinologist and doctors and surgeon, all treated me as any AMAB person going to transition to female.

I get that you are looking for reasons why - Reasons to justify your feelings - You can't, you are you and that is life unfortunately.

[BlueJaye]

It's hard to say whether or not you have Klinefelter syndrome without a karyotype test to verify. There are plenty of cases of people with Klinefelter syndrome who don't exhibit most of the symptoms, and plenty of people with numerous of the typical symptoms who do not have the extra chromosome (XXY). If you really want to settle any doubts, ask your doctor to perform a karyotype test. Chances are that it won't be covered by insurance since it is not medically necessary, so be ready to shell out some money.

As was already stated, chromosomes and the abnormalities that can accompany them don't dictate who we are. I am not a woman because I have am X chromosome any more than I am a man because I have a Y chromosome.

But I will say this: there does seem to be a connection between gender identity not matching phenotypic sex and having unusual sexual development. I was recently interviewed by a journalist from Outsports, who also happens to be trans. As were conducting the interview, she was asking about the "permanent effects of male puberty" and all of the arguments in the sports world about that idea. I mentioned that as a kid I didn't have much endogenous testosterone, and that I was put on exogenous testosterone to try to "normalize" me at what should have been the onset of puberty. She was silent for a moment before telling me that she had also had an unusual puberty and didn't develop much for masculine features, and had heard similar stories from several other interviewees during her career covering trans related sports issues.

So, at least at an anecdotal level, it does seem like there could be a connection between gender identity and unusual sexual development.

[Michelle_K]

While growing up I was told that the pain in my side was just a symptom of laziness. It was not going to get me out of work. Occasionally, the pain would come and go,I would get told it was all in my head. I learned not to bother my parents about any pains. While in the military, the pain got severe, and I ended up in the hospital. I was later told that my appendix ruptured while I was on the operating table.
I'm trying to show that my feeling did not matter, that I was always wrong and my parents were always right.
When I burned my hand on a hot exhaust pipe on the combine, it was very painful. My mother set me straight, it was her and not me that got their hand burned. My mother told me she did not know who got their hand in the washing machine wringer, but it definitely was not me. I thought I had won a pair of roller skates in a raffle, It was painful to admit that it was my dad who had won the skates. The big problem was, he lied to his friends about winning the skates.
Since I have never been tested for Klinefelter Syndrome, I can not claim I have it. I would like to get tested for it, but I was told the test is too expensive.
Should I believe my therapist who told me that I loved being male because I masturbated, and therefore was not trans. This was back in the 1990s.
I see this all over the place.
Unless a doctor says so, you can not have ADHD.
Unless a doctor says so, you can not have autism.
I have no proof that I am intersex, so I can not clam to be intersex.
All this could be due to the fact that my mother put dresses on me until I was about 4 years old. In other words she raised me as a girl until that time. None of that would make me look like a girl, to get constantly misgendered as a female when I am trying to live as a male. To even get yelled at when entering the men's restroom. It may have started as a joke, if I look female, I might as well dress female. Finally clothes that fit properly. I have never had hormone therapy, and I pass as a female even without makeup. I don't even get a second glance entering the women's restroom. My genitals have been dysfunctional for decades. I decided I needed get tested, my testosterone level was low, but normal.(Whatever that means) No followup.
Michelle

[Michelle_K]

Should I believe my therapist who told me that I loved being male because I masturbated, and therefore was not trans. This was back in the 1990s.

I believe I should clarify that statement. I had not asked for hormones or surgery. The person that said I was not trans was never in any of my previous sessions. I was never told what I had to do to qualify. She showed up at that one session. Asked if I masturbated, hearing my answer, she said I was not trans, End of session.

[BlueJaye]

Just curious, how old are you? It wasn't that long ago that all small children wores dresses.

[Michelle_K]

I know very well that president FDR wore dresses as a child. There is even a photo of him in a dress. Pink was for boys and blue was for girls. I'm thinking that for girls the dress had more lace and ribbons. I would not know if in the 1950s the colors were already switched. Somewhere I stated it was more convenient for changing diapers. It was also common to punish a boy by making him wear a dress.
Michelle

[Michelle_K]

I am 74 years, I'll be 75 in August. I have no idea if they have a cutoff age that they would no longer offer surgery.
I have been unable to drive for the past few months for two reasons. My eyes were so bad that I did not see the red indicator light in the dash for the parking brakes, and drove a bit with the brakes on. The car should be repaired next week.
Second, I am recovering from cataract surgery, with two weeks before I get checked for a new prescription. The glasses I found give me 20/20 vision, but there is a scuff mark on one lens and doesn't correct for astigmatism.
Most of the therapy places I checked had a waiting list or not accepting new patients. So I would be unable to get the recommendation for Hormones. That is beside the fact that I would have been required to drive 150 miles to get to a place for transgender therapy.
I do have the option of going to the VA hospital about 100 miles away, and the web site showed that they will be trans friendly. I currently have a internet therapist, but he can't prescribe or recommend hormones.
I forgot to mention in the military area. Knowing that I was about to be drafted, I enlisted in the army. I never went to Vietnam, so I am not a Vietnam veteran. I am a Vietnam era veteran, serving 6 months in Germany.
I do have a primary care provider at the local clinic connected with the hospital that helped me with the broken wrists. What I would like to know is if the the My Chart and the VA records can be connected so the VA can access the my chart records so they can see the CT lung scan and all the other test including the two ECG results.
As for the ADHD and the autism, I really see no medical value in having a diagnosis. I may forget to take my pills, but they are only vitamin supplements and don't matter that much. My eye drops are in sight by the computer so I don't forget them.
Michelle

[LoriDee]

Hi Michelle,

As a veteran, your transgender care is covered through the VA. You should make an appointment so you have a Primary Care Physician there. Every VA clinic or hospital must have an LGBTQ+ Care Coordinator on staff. You can find their contact information by going to the local VA website. The Care Coordinator works with your Primary and Mental health providers to help you access the care you need. The VA can access MyChart records, so your Primary can update your VA records. I was being seen by several community providers who use the MyChart system and the VA records were updated regularly.

The VA, like most providers, will require a Mental Health Evaluation before they will prescribe hormone therapy. It's not a big deal. You tell your Primary what you want and they will do a consult with the Mental Health Department and get you an appointment.

The Mental Health professional will need to make a diagnosis of Gender Dysphoria. Providers do not just hand out hormones because you want them. Hormone Therapy is a treatment for Gender Dysphoria. No dysphoria means no hormones. And it also means you won't be able to get surgery down the road. Gender Affirming Surgery requires a letter from your mental health professional and another letter from another provider (Primary, Endocrinology, Gynecology, etc.). The letters state that you have been diagnosed with Gender Dysphoria and surgery is recommended and medically necessary.

The surgery is not covered by the VA yet, but there is a lawsuit pending to get that changed. Again, surgery is for one of two reasons: to treat Gender Dysphoria, and/or to correct an injury or defect of some kind so that function is restored. If it is an injury or defect, your Primary can initiate whatever needs to be done to get surgery if it is deemed medically necessary. For Gender Affirming Surgery, a mental health diagnosis of gender dysphoria is needed first, then your Primary can recommend surgery as medically necessary. Gender Affirming Surgery is never recommended for someone who does not have a diagnosis of Gender Dysphoria.

In my case, my Primary referred me to Mental Health for Gender Dysphoria. With that diagnosis, my Primary then referred me to Endocrinology for Hormone Therapy. The Endocrinologist retired from the VA, so I am now being seen by a Gynecologist who monitors and prescribes my hormones. They told me that age is not a barrier to surgery. (I am 66). They said your overall health is what matters not age. Vision issues should not be a barrier. Your Primary can advise you further on that.

As a veteran, these services are provided to you at no cost. Depending on your eligibility, you may have to pay a copay for medications, but the prices are SO much cheaper than other insurance or out-of-pocket.

I hope I have provided some useful information here. If you have questions about VA care I am happy to answer them.