How do we know we have ITP?

For us ITP'ers who don't bleed or bruise, how do we know we have ITP particularly as in my case the "standard" drugs for ITP don't work? As far as I understand it, ITP is diagnosed by exclusion of other (more serious) illnesses like leukemia, etc. It is a question I have asked my haematologist but the answer I got was pretty negative.

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  • Hi Mags, Yours is a very good question I have also wondered about AutoImmune Thrombocytopenia several times. The usual diagnosis is a negative one, that is one of a platelet count below 100 with no obvious other causes such as liver,or spleen sizes and correct functioning,no infections from such diseases eg HIV,Hepatitis C ,all the blood parameters are fine except for the number of platelets. I guess we all know these by heart and can add a few more. A disorder being by the elimination of all currently known causes is always a puzzle especially to those who show no obvious responses to drug treatments. There are tests for antibodies sometimes used but these are not a reliable confirmation diagnosis. I am not giving a very positive response to your question, especially as there is no reliable test for ITP , probably just a collective term for a number of unknown autoimmune causes and in those terms remains idiopathic. I would also appreciate a more positive definition, although I have responded well to treatment (. so far ).

  • We know we've got ITP because they can see under the microscope that our platelets are all large meaning that they are all new, showing that they are killed off too quickly before they can age. Other causes of a low platelet count will show differently under the microscope.

  • I think we dotn know..until we see the rash or bleed for no reason..and then our blood test will show we are Low on the platelet side..and i guess we countinue to do so .......also a Bone marrow test is there to prove it is itp we have and not any other serious illness

  • I don't bleed or bruise either; my ITP was discovered during routine pre-op testing (my operation had to be postponed for almost six months). I had a bone-marrow biopsy to determine whether I had ITP or something else, and since then, regular blood tests. I never know whether my counts or up or down without the test results. It's fairly unnerving, knowing that that I have no idea what's going on with my blood.

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