Patient Comments: Thrombocytopenia - Describe Your Experience

What�s your biggest challenge with living with Thrombocytopenia?

Comment from: carriewaleisky, 0-2 Female (Caregiver) Published: March 20

My 2year old son went in for a regular physical, where they heard a heart murmur for the first time, the week before his appt. he had developed a severe stutter that came and went after a week, he had 2 nose bleeds. They had a cbc done and resulted in a platelet count of 37,000, doctors followed up with another cbc 2 days later and resulted in a platelet of 45,000. They advised me that he had ITP caused by a viral infection (even though he has not been sick ever, but has had enlarged lymph nodes since he was a baby) they told me he was fine, not to worry and to give him a multivitamin with iron (I did) and to have labs drawn in 2 weeks, they said they should be back to normal by then. 2 weeks later his levels dropped back to 40,000. They want me to wait a week and have labs done again. I don't know what to do, or how to feel about this. I'm not confident in the doctors and the procedures they are following.

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Comment from: ghie, 45-54 Female (Patient) Published: November 16

I was diagnosed as ITP with anemia thru bone marrow biopsy. I was on steroid for 2 years and off medication for the last 4 years, but, my hemoglobin level down to 9.2 so i decided to take iron supplement twice a day. After a month i checked my CBC my Hgb dramatically increased to 13 but my platelet down to 65 from previous result of 175.there was a time that my Hematologist suggested spleenectomy when my platelet dropped to 26 after weaning from steroids but i didn't buy the idea. I'm working in a shift. I'm a nurse.

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Comment from: susanML4650, 55-64 Female (Patient) Published: January 25

I have had Thrombocytopenia since 2001. Four years ago I went to a Hematologist-Oncologist and all he did was check my platelets and tell me if I started to bleed, get to an ER. I switched to another Doctor back in July of 2009. He was supposed to be "The Best" for Thrombocytopenia. After four months my platelets dropped to 19. I felt fine, just a little more tired then usual. The doctor decided to put me on 80mg. of Prednisone daily for three months. After 6 weeks, my lips, tongue, and esophagus were burning. It was also starting to burn my stomach. The only way I could stop the burn a bit was drink milk. LOTS of milk.(1/2 gallon per day-skim). When I went to my PCP Doctor, he said to start weaning myself off of the Prednisone because it appears I had developed an allergy to the meds. When I called The Hematologist, he was angry that I was weaning off of it. My platelets had risen to 81 and that was the best they had been in 5 years. When I went to see the Hematologist again, he said I went off of the Prednisone too soon. (4 Weeks of weaning). He pretty much wrote me off and said he would see me in two months. I had been going in every 3 weeks. My platelets slipped down to 61 and I now have Diabetes, High Blood Pressure and high Cholesterol and Triglycerides, that I never had before the Prednisone treatment. From what I have read, there is no cure for this.

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Comment from: Rachel, 65-74 Female (Patient) Published: August 18

I feel like a guinea pig. I have blood draws regularly, but limited treatment. One hospitalization with high dosages of prednisone, then immune globulin, and suggested experimental drug with harmful side effects. Over a three year period my platelets hovered in the 70-90 range. Now they are 36 and I am on a short-term dexamethasone treatment with a possible consideration of another highly experimental therapy. My liver is starting to show some elevations, I recently had a lot of X rays and I think the x-rays may have lowered my platelets. Not enough research in this area. More needs to be done. Causal factors need to be found and treatments that are safe need to be found. Cortizone is not the answer either.

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Comment from: Hopeful, 35-44 Female Published: June 08

I asked my doctor if I could have a blood test to check my vitamin levels. I was feeling tired, loved to eat ice. The results appeared to show that I had a severe case of anemia. I started taking Iron Supplement. Followed by another blood test all areas related to anemia appeared to look normal but my platelet counts went down to 14. Following another blood test 4 days later platelet count went down to 10. I wasn't experiencing any bleeding except for a strange (something) looks like plantar warts on one of my foot. I was advised to go into ER. ER doctor suggested optional platelet transfusion. A Hematologist speculated ITP or TTP. So I've started taking prednisone. I've been feeling perfectly fine. I'm just concern with 5 weeks of taking prednisone the side effects that I my experience.

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Thrombocytopenia (Low Platelet Count) - Causes Question: What was the cause of your thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Symptoms Question: What were your symptoms associated with a low platelet count?
Thrombocytopenia (Low Platelet Count) - Diagnosis Question: What changes have you had to make to your routine since being diagnosed with thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Treatment Question: What kinds of treatment did you receive for thrombocytopenia?

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