Blood Clots with ITP

Early August I had a Pulminary Embolism in my left lung with a Platelet count of 20K<. They put in a Vena Filter in my vein to prevent further clotting going to my heart or lungs and then 4 days later my legs shut down. I was put on Promacta and counts went up to 120K+ and then added blood thinners (Warfarin). Question is how can I have blood clots with such low counts? This past week I had my veins in both legs all the way past my groin and it was loaded with them. So I am still producing clots in the legs and would like to see if I could stop them. My Dr.Steve Orman, trained by Dr. Kessler is still searching for answers.
Any experiences in the group that may indicate a secondary blood disorder?

ITP is often associated with clotting problems. There are a few reasons. One - platelet microparticles. These are tiny platelet fragments that cannot be measured with current CBC's. They can become excessive enough to cause clots. Two - APS. This is a secondary disorder that can go along with ITP. 33% of people with ITP have APS. I have had the antibodies also. If you have APS antibodies, clotting with low counts is possible. There is a blood test for this. Three - TTP. Some people with ITP are also prone to having TTP. This is a disorder where red cells and platelets are involved, and it can cause a clotting storm. It's important to rule that out since it can be very serious. Four - splenectomy. Studies have shown that the clotting risk rises after the spleen is removed.

It is important that you keep a good balance with platelet counts and blood thinners. Promacta can also cause blood clots, so keeping counts in a safe, low range is best. Keep us updated.

My INR is now 3.5 and platelets at 168K. My legs veins were cleaned out last week and finally have venis blood sufficient to my heart. I will get the blood test next week. If positive are there any treatments for that? I have not had my splene removed

Blood thinners are the treatment for APS and most other clotting probems. TTP requires a bit more, sometimes plasmapheresis. It can be a tough thing to balance. There used to be a woman here who had clotting at counts below 20k. Nothing got her counts up, so she had to use blood thinners on top of it. No one could find a reason for it. She was tested for APS many times and nothing ever showed up. Finally years later, it was determined that she had the Lupus Anticoagulant, which is the worst of the 3 APS antibodies.