Patient Comments: Klinefelter Syndrome - Symptoms

What were the symptoms of your Klinefelter syndrome?

Comment from: andromeda, 35-44 (Patient) Published: January 28

I was 10 when diagnosed with XXY Klinefelter syndrome. Now my problem was obvious to my doctor, I was more female than male having a full uterus and vagina plus fallopian tubes with sacs. Now on male side I have tiny testicles, normal size penis and dime size prostate to say. I am in my 40s now but with B cup breast and thin body (118 lb.) with curves, 22 inch waist plus 38 inch rear. My three doctors are still puzzled, I gave up trying to figure out what I am. But after graduating from medical school I now live a normal life.

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Comment from: Chriss-E, 7-12 Female (Caregiver) Published: March 02

My son was diagnosed with Klinefelter syndrome about a year and a half ago. He is 11 and he has recently begun androgen replacement therapy. We are two months into it, and although he has always been very quick to anger, the last month has proved very difficult. He has been insulting to everyone and when he's been given consequences, he doesn't seem to care. Nothing seems to work and I am at my wits' end. I don't know if this is a natural side effect of the androgen therapy because he has now begun puberty. I would love insight into the side effects of the therapy and any tips on how to handle the situation.

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Comment from: frustrated, 45-54 Male (Patient) Published: March 31

I was diagnosed with Klinefelter syndrome in 2004 and did not believe what they said and got 3 opinions to diagnosis that I had it and I am 50 years old now. I have lung scarring with no cures or no healing and cannot be reversed. They think it just activated 1 year ago, it is called bronchiectasis. I had a heart catheterization just recently and that was fine, thank goodness. I now have liver lesions and/or cysts and a pancreatic cyst that may be related to Klinefelter. Doctors think I have some kind of serious liver disease called hepatic outflow obstruction which is a blockage in the liver veins flowing of blood and they say the correction is surgery. I was on testosterone therapy but from it acquired breast nodules and that the therapy was stopped which did not bother me at all, the side effects from testosterone therapy are major with liver cancer being one of them. I never had problems in that area anyway. I think that you have to be your own patient advocate and if a doctor cannot figure it out you go to someone else.

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Comment from: xxy ge, 65-74 Male (Patient) Published: March 07

My diagnosis was confirmed at age 38 as Klinefelter syndrome and I have had a variety of testosterone replacement therapies and am now using a gel applied daily. As a youth I was tall and slim but with little stamina for intensive sport; cross country running would leave me cold. At age 8 I had had mumps which left me partially deaf and the delayed puberty was blamed on mumps too. Fortunately the syndrome did not affect my language abilities and I read, write and speak English, German and French and have an IQ above 135. At 67 I am morbidly obese, suffer sleep apnea, and elevated blood pressure, and all teeth gone, have diabetes 2, am about to learn how haywire my thyroid has gone and have indications of osteoporosis.

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Comment from: PAPA, 65-74 Male (Patient) Published: October 08

I was diagnosed with Klinefelter syndrome at age 28. Growing up was pretty tough as the condition was unheard of. As a teenager I developed breast tissue and was teased which forced me to give up a lot of sport because of the embarrassment in the showers. Not knowing what it was my doctor and parents thought it was fat and so I was made to exercise to get rid of it. Fortunately my sex drive wasn't affected and I had a very active sex life. At age 25 I had cosmetic surgery to remove the breast tissue meanwhile my body started to change from tall and skinny to tall and fat and at age 66 I am morbidly obese. Although I have had mainly physical impairments I am quite grateful that my mind wasn't affected. I have held many interesting jobs and have been a self-employed insurance broker for 29 years. The extra x chromosome I believe also gave me a wider range of singing notes enabling me to sing quite well. I am sterile but it hasn't all been bad. Life is what you make it.

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Klinefelter Syndrome - Treatments Question: What was the treatment for your Klinefelter syndrome?
Klinefelter Syndrome - Physical Development Question: If you or someone you know has Klinefelter syndrome, describe challenges in physical development.

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