Patient Comments: Klinefelter Syndrome - Symptoms

Question:

What were the symptoms of your Klinefelter syndrome? Submit Your Comment

Comment from: Joey, 19-24 Male (Patient) Published: July 24

I was just diagnosed with Klinefelter syndrome at 23. I have a micro penis and very small testicles. I'm 100 percent impotent as well. I also have feminine fat distribution and wide hips. My breasts are an A cup and the nipples are very swollen and puffy. I also have mild gender dysphoria.

Comment from: Padraic , 25-34 Male (Patient) Published: May 15

I'm 28 and just been diagnosed with Klinefelter syndrome. I'm 6 ft. tall, skinny, with a little belly, bad teeth, small testicles, dyslexia, osteopenia, bad moods, testicular calculations, kidney stones, varicocele on both testicles, testicular pain, and little facial hair. The reason I write here is to encourage men to get regular checks; also don't ever believe your general physician. He has been telling me for years that my moods are related to mental health. If you feel your mood is low ask to have your blood checked for hormone levels. Don't just go take medication that can have severe consequences on your long term health. I am not on testosterone therapy yet, waiting for blood results. I will look forward to being a happier person. Thanks for writing your stories on here. It's nice to finally feel the same as other people.

Comment from: Mika, 45-54 (Patient) Published: March 09

I'm 46 years old, with Klinefelter syndrome, XXY. I have 1 normal sized testicle, one very small. I have celiac disease, and suffer with irritable bowel syndrome. I was born with severe hypospadias, and had 2 surgeries to fix that. I have autistic spectrum disorder, and gender dysphoria. Anxiety and depression are my life.

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.

Comment from: sport, 75 or over Male (Patient) Published: August 13

I am a lot older male, not much hair, micro penis and very small gonads. I have been incontinent for several years, and have small breasts. They never tested me so long ago for Klinefelter syndrome.

Comment from: Worried mom, 13-18 Male (Caregiver) Published: July 24

My son has many of the symptoms of Klinefelter syndrome and wets the bed. Blood tests are pending.

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.

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.

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.

Comment from: AcEd21, 19-24 Male (Patient) Published: February 08

I am a normal 20 year old guy with klinefelters syndrome. I had no troubles growing up with large breasts or lack of facial hair, but regardless I still have it. I live an active sex life and still use protection even though I am "sterile". I think anyone with this disease should not be ashamed of it.

Comment from: wife of xxy, 55-64 Male (Caregiver) Published: April 08

My husband and I have been married for more than 40. When we married I had two young children, whom he raised as his own. After we were married for a few years, he was told he was sterile (possibly caused by mumps) so we did artificial insemination (AI) and I gave birth to a beautiful, healthy son. Several years later, my husband was diagnosed with Klinefelter. He has problems with sleep apnea, arthritis, and weight control. He is the sweetest man ever – and nobody has ever known about the AI – so he has raised three beautiful, intelligent young people. We have eight wonderful grandchildren – so there are ways around every obstacle. Just keep looking!

Comment from: kidstoys37, 45-54 Male (Patient) Published: December 03

I too have Klinefelter Syndrome. I'm 47 years old, tall, and don't have breasts. I was reading about the 20 year old that posted and believe me I wanted kids at 20 and I went through being depressed for a long time. To this day I would still like to have a child. Adopting and having a child are two different things. My mind races about everything and I too have severe sleep apnea. My fiancee bumps me in the night to jump start my heart to start breathing again. I'm a mess! I do work during the day, I'm a loner and I'm just happy being alone outside at work. I get 200 mgs every two weeks too. When I get my shot I'm moody for about three days and then I'm fine. I still have a sex drive of a 18 year old as well.

Comment from: 1sillyme, 35-44 Male (Patient) Published: September 21

I'm 35 years old. I was diagnosed by my doctor at age 14 with klinefelter syndrome. They were very slow at putting me on testosterone. I started testosterone when I was 29 years old. I have very small testes and a small penis. I'm overweight and very tall, and have large breasts.

Comment from: radbear44, 45-54 Male (Patient) Published: July 05

By the age of 14 I had bigger hips than other boys my age and my breast were larger, despite this I went through my teen's without knowing what I had, I had intercourse as a teen with women and were able to ejaculate up to 10 times in one sex session. I was never interested in males only females. I had no trouble getting an erection. When I was 19 I was in the army where I was getting migraine headaches a lot. At a hospital in DC they diagnosed me with klinefelters and started me on depo-testosterone shots, once every 2 weeks. I began to gain muscle and I had a sex drive that would put an 18 year old to shame. I felt energy and power; my emotions would get the best of me sometimes. I would feel sorry for women and because of this I have been married 4 times. I would get married to help them to help them financially and at first the sex was good but then I found them not able to keep up with me. I grew lots of hair all over. My testicles never grew they stayed a child's size. My breast flattened out. My hips are still big. I have osteoarthritis in my hips and knees, Carpal tunnel in both hands and severe sleep apnea. Recently I have been diagnosed as a diabetic type 2. I don't drink or smoke and I work out at the gym 5 days a week. My doctor has recently given me Zoloft for depression which has zapped me of my powers. I am 52 years old. Sterile, 5'9" and weigh 265lbs. Any questions just ask.

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