Patient Comments: Idiopathic Thrombocytopenic Purpura (ITP) - Symptoms


What symptoms and signs did you experience with your idiopathic thrombocytopenic purpura (ITP)? Submit Your Comment

Comment from: Jeanne, 65-74 Female (Patient) Published: November 24

I was walking my dogs on the beach one morning, when I had cramping and I rushed home and had diarrhea. I felt ok and went to work. Around noon I felt lightheaded and started shivering uncontrollably. I had my coworker take me home. I sat in the sun until I warmed up and then rested for the remainder of the day. I felt ok when I woke up the next day but my blood pressure was very low. I had slight tenderness on my lower right side, and cramping and pain around to my back. I googled my symptoms and thought I had a bladder or urinary tract infection. Around noon, I started shivering so uncontrollably that I called a taxi to take me to urgent care. They checked me out and said I had very low blood pressure and was dehydrated but no fever. They hooked me up to an IV for fluids and started blood tests. Seven hours later they still didn't know what was wrong with me and were ready to send me home since they were closing, with the instructions to go to the emergency room (ER) if I had any worsening of symptoms. As I was getting ready to go, some blood tests came back with unusual numbers and they told me to go over to the ER to get checked out. I was in the ER for seven hours, while they did blood tests, pressed on my abdomen, and did an ultrasound which did not reveal anything. They sent me in for a CAT scan which showed appendicitis. And I was admitted that evening and had laparoscopic surgery. They told me my removed appendix had been inflamed. During this whole ordeal, the slight pain in my lower right abdomen was the least of my symptoms.

Comment from: jackie25594, 45-54 Female (Patient) Published: November 14

I was diagnosed with this condition when I was a child. I was suffering from nosebleeds that would last for hours when I was 4 and up. My dad was a doctor, so he took me to the children's hospital. They diagnosed me with ITP (idiopathic thrombocytopenic purpura). They always checked my spleen, but never removed it. They said I was all set after I started menstruating and I did not bleed to death. But, at 54, I still have symptoms. I get the petechia when I am overtired, my little cuts don't stop bleeding for hours, etc. I think I still have it.

Comment from: Itpgirl, 13-18 Female (Patient) Published: September 18

I'm a 13 year old girl and I have ITP. It started off with petechiae on my back not a lot but a little. The next day I woke up with blood on my bed from a nosebleed and more petechiae. I told my mom, but she thought nothing of it. The next day, I woke up with blood blisters in my mouth. Like, covering my whole mouth. I was so scared and crying and I didn't want to eat or drink or talk to anyone. I went down to a hospital and got lots of blood taken. I didn't know what was wrong. It turns out I only had one platelet. And, yes, I mean one. That's all they could find. I was diagnosed with ITP. I stayed in the hospital for four days and had two rounds of IVIG, which gives terrible headaches and bad nausea! I was finally released from the hospital and now I'm doing great. My platelets are normal and I'm in school.

Comment from: Laru, 75 or over Female (Patient) Published: November 14

My hand was lying flat on the desk, I felt a 'pick' of a needle and a burning sensation. Within a matter of seconds I had a lump on the back of my hand that continued to grow. Emergency room nurse and doctor said they had never seen anything like this. Treatment was 2 incisions to release blood from little finger side of my hand to thumb. First incision squirted all over the floor, the second filled a hospital bag. I was stitched, and released.

Comment from: Pearl, 55-64 Female (Patient) Published: May 12

I was diagnosed with ITP in my late 20's also after leukemia was ruled out. Symptoms started with rash (peticiae) on my feet--thought it was from the wool socks. Once I developed lesions on my tounge I thought it was a good idea to see an MD. There was lots of fear expressed about internal and the potential for excessive bleeding; however, after treatment with prednisone I never had any re-occurance of the condition. I have never been able to give blood because of the history of ITP. Sometimes I wonder if it was misdiagnosed and really was scurvy because I was doing a lot of backpacking and likely very deficient in vitamin C.

Comment from: jo123, 3-6 Male (Caregiver) Published: May 02

My 5-year-old grandson suffers from ITP. An oncologist at first was sure he had leukemia, but a bone marrow biopsy showed that it was not leukemia, but was ITP. He suffers from intense leg pains after an active day. He is chronically on Children's Tylenol. His grandfather has a bleeding disorder which they do not relate to ITP. He has to be home-schooled because of the risk of infection from other children. He is an otherwise very normal little boy who is very active and we are hoping that this condition will end soon so he has a normal life with school and sports included.


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