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Anyone else have issues with blood clots (DVT, PE, TIA). Doctors are having trouble figuring out the problem, one minute I am clotting up, the next I am    Practically bleeding out. I was not on any blood thinners or other medicine to help clot. 

 

 

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Yes they have been testing me for many years and can’t figure out what is going on. I always seem to be a little high or a little low on the tests. I think my normal does not fall into the ranges they have/use. It is that way for almost everything with me. Glad to hear how well the infusions/port is working for you.

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I have had 2 Pes, 2nd occurred 2 weeks after stopping blood thinner treatment for the first one. Also have bleeding problems that preexisted blood thinners, theyve just made it worse. In fact my hemoglobin was at 5.2 when we found my first clot. Has been a looooong journey up till now, 58 units of blood, a failed ablation and subsequent hysterectomy and we are hoping that things will improve. 

If you have any other questions I'd be happy to try and answer them. Praying your journey is easier!

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Has anyone checked anti phospholipid syndrome?  See https://www.dysautonomiainternational.org/blog/wordpress/what-dysautonomia-patients-should-know-about-antiphospholipid-syndrome/. There also was presentation at the last Dysautonomia International annual meeting about it I think.  There’s a video somewhere.  Sorry I cannot be more helpful.

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I’ve just recently been diagnosed with bilateral PE’s (September). I’m on Xarelto to help dissolve them. I’m curious about APS - there is a history of blood clots on my mom’s side of the family (my grandmother died from one) and my mom has fibromyalgia. I may ask the hematology team next time I see them 👍🏻

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They checked for APS or sticky blood many times, I am always just inside of what they say is normal range high or low depending what version of the test they do.

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