ITP,splenectomy, then blood clots

I was diagnosed with ITP 2 years ago and went into the hospital with a platelet count of 7. I started on prednisone, then more aggressive treatments. Nothing worked and was hospitalized 3 or 4 more times with counts lower than 10. I finally got a splenectomy and left the hospital feeling great. A week later I went back with pain in my stomach. I had developed splenic vein thrombosis. The clot almost made it to my lungs. I was in the hospital for 2 or 3 weeks getting it under control. I was put on wafarin and told it should clear up pretty fast. It has been almost 2 years and I am still on it. I just got insurance so will be seeing someone who knows more very soon. My problem is I am starting to have the same symptoms I did when the ITP started. Extreme exhaustion,really bad headaches, super grumpy, random bruises, and I have had an extremely heavy period for about a month. My last CBC wasn't too alarming. Platelet counts were good. I do have an elevated WBC. This week has been the worst of this past month. I am super worried that this horrible things is going to happen again. The last time I got kicked out of the program I was in at school. Still haven't graduated. Lost a couple of jobs, too tired to do fun things. My question is has anyone gone through this? I am seeing the doctor Monday to get a referral to a hematologist soon after. I would love to hear others experience.

Chrissy:

Splenic vein thrombosis can be a complication of the surgery, however, smetimes people with ITP can be at greater risk for blood clots. There are several reasons.

After splenectomy, patients with ITP have a higher risk of venous thrombosis and sepsis than patients with ITP who do not undergo splenectomy.

www.bloodjournal.org/content/121/23/4782.abstract?sso-checked=true

ITP patients can also have greater risk of clots because some patients also have Antiphospholipid Syndrome which can sometimes go along with ITP.

Antiphospholipid (AN-te-fos-fo-LIP-id) antibody syndrome (APS) is an autoimmune disorder. Autoimmune disorders occur if the body's immune system makes antibodies that attack and damage tissues or cells.

Antibodies are a type of protein. They usually help defend the body against infections. In APS, however, the body makes antibodies that mistakenly attack phospholipids—a type of fat.

Phospholipids are found in all living cells and cell membranes, including blood cells and the lining of blood vessels.

When antibodies attack phospholipids, cells are damaged. This damage causes blood clots to form in the body's arteries and veins. (These are the vessels that carry blood to your heart and body.)

Usually, blood clotting is a normal bodily process. Blood clots help seal small cuts or breaks on blood vessel walls. This prevents you from losing too much blood. In APS, however, too much blood clotting can block blood flow and damage the body's organs.

www.nhlbi.nih.gov/health/health-topics/topics/aps/

Hopefully, your new Hemo can figure out what is going on. As far as ITP, if your counts are normal, you'd need to find some other reason for the symptoms. It's possible to have a thyroid problem or Vitamin deficiency, etc., that is causing all of it. If your counts are down, you'll have to review your options and go from there.