Thrombocytopenia - Experience

The eMedicineHealth doctors ask about Thrombocytopenia (Low Platelet Count).
Please describe your experience with thrombocytopenia.
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See what others are saying

Published: June 16

I was undergoing severe continuous headache from 2001 and was diagnosed with idiopathic intracranial hypertension and edema in the eye till 2011. From 2012 onwards I developed idiopathic thrombocytopenic purpura (ITP), and platelets drop every 6 months. From 2015 December, after IVIG, all reports are normal, and at present platelets are 40,000. After having papaya leaf juice daily it increased to 90,000 right now. Every time I was treated with steroids, I had heavy bleeding in every month’s cycle. Presently due to suppression of immune system it has led to tuberculosis (TB) in the neck found after biopsy. At present I am not able to take treatment for TB because I may undergo blood and platelets loss again while treating. For more than 15 years I have been in search of doctors, tests and investigation, and looking for suggestion to improve my health and to lead peaceful life without any fear..

Published: March 25

Through a routine CBC my primary care physician discovered my platelets were 54 and sent me to a hematologist to find out why. Nine months later there is still no explanation for my thrombocytopenia. All other lab numbers are good and none of my 4 medications seems to be affecting it. I have had a spleen ultrasound, a liver/spleen scan, referred to a liver specialist and sent for a second opinion with another hematologist at a medical school. Platelets dropped to 44 so a 2 week trial of steroids was started just to see if that would raise them but so far they have just gone back to 59. The time, money, worry and frustration sets in because you don't know if there is something there lurking undercover or not. The next step is just to have hospital records marked that any scheduled surgeries will require a platelet transfusion. In case of an accident or being at a different hospital I just hope I will be conscious and aware enough to tell medical workers I have a low platelet count..