47XXY and Deep Venous Thrombosis – Support

Klinefelter’s syndrome: Associations with increased blood clot (thrombosis)
events (deep venous thrombosis, pulmonary embolus, venous
thromboembolism).

Free consultation and evaluation.

The close association of Klinefelter’s syndrome (47XXY) with unexplained thrombosis has been known for at least 33 years. Venous thromboemboli (VTE) are ~20 fold more frequent in Klinefelter’s syndrome than in the general population. Previous single case studies of Klinefelters with VTE have found Protein C deficiency, Lupus anticoagulant and anticardiolipin antibodies, and protein S deficiency, homocysteinemeia, the lupus anticoagulant, Factor V Leiden Heterozygosity, Prothrombin gene 20210A heterozygosity, high Factor VIII and high Factor XI .

In our most recent publications, of 67 patients with VTE after taking testosterone, had Klinefelters treated with testosterone replacement therapy. The uniform normal practice to treat the testosterone deficiency of Klinefelters syndrome is with exogenous testosterone. Since exogenous testosterone can interact with previously undiagnosed thrombophilias to produce VTE, there is a reasonable likelihood that the VTE observed in Klinefelters cases does not represent some unique prothrombotic characteristic of Klinefelters itself, but reflects the thrombotic effects of uniform testosterone supplementation interacting with an inherited or acquired increased tendency to form blood clots (thrombophilia) in a group which may also be enriched with familial thrombophilia.

Take Action:

If you have a well-defined diagnosis of Klinefelters syndrome, and have had VTE while taking testosterone therapy, you may have a high likelihood of having an inherited or acquired thrombophilia. We would be glad to assist as follows:

  1. If you can get to Cincinnati for a FREE 1 hour outpatient consultation, we will obtain the appropriate blood tests for thrombophilia, as well as evaluate your case, and make recommendations for future therapy.
  2. If you cannot get to Cincinnati for the free 1 hour outpatient consultation, we will, FREE OF CHARGE, provide the necessary laboratory orders for the appropriate blood tests for thrombophilia, evaluate your case, and make recommendations for future therapy. However, your health insurance will have to cover the costs of the laboratory testing for thrombophilia, and unless your health policy covers these costs, they would be very very expensive for you to pay by yourself. If you already have laboratory results for thrombophilia, we will be glad, FREE OF CHARGE, to evaluate them and make recommendations.

Charles J. Glueck MD, Jewish Hospital of Cincinnati, 2135 Dana Avenue, Cincinnati OH, 45207. Email cjglueck@mercy.com, Phone 513-924-8250; Fax 513-924-8273.

High Risk of Venous Thromboembolism in Klinefelter Syndrome

4 Thoughts

  1. Makes us really happy that we were forewarned and forearmed against taking Testosterone from medical people. Oh so many times has Medicine found the perfect “Cure” “antidote” “nostrum” or therapy only to discover down the line that there are many many unlooked for side effects or just plain effects.
    We note this is a Jewish health center and we wonder how many of the patients are Jewish. Given the high numbers of CAH in Jewish women – we suspect that there may be a similar thing here. Small inbred communities could have a significant increase in the number of individuals with KS who have the necessary tendencies toward thrombosis.

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    1. There’s a risk involved in every form of medication inclusive of paracetamol where the onus is on the individual whether to administer it or not, I think most people might opt for something/anything that involves a better quality of life and hope the consequences of such actions never impact on them personally. As for the Jewish hospital, I am pretty certain they are not just looking for Jewish XXY’S so break a leg, give them a call and surprise yourself.

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  2. That’s great but I no longer have health insurance nor can I afford to buy it since my wife lost her job of 30yrs. I’m XXY & last year diagnosed with lupus anticoagulant but take NOTHING!!!

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