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Frustrated and Anxious 2 months 3 days ago #71712

  • Krousey1
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I was diagnosed with ITP 07/31/2020. Started in April 2020 with bruising, May with Petechia, June with horribly heavy period, nose bleeds and blood blisters in the mouth. I get a physical every year and the last was in September 2019 and platelets were normal. I attributed all symptoms to other possibilities with exception to the period. I contacted my OB\GYN who advised me to go the ER because the bleeding was so heavy with massive clots and a few very embarrassing moments of gushing/breakthrough bleeding. I didn't go to the ER out of embarrassment and COVID. When I did finally get in to see him he ordered blood work along with other tests. He ordered an additional test when my platelets came back at 23 thinking the reason was pseudo-thrombocytopenia. Exactly two weeks later, the 2nd test came back at 13. Meanwhile, I starting peeing blood. I was at the hematologists within 24 hours of the second test result and tested again with a citrate tube at 11, at that time all of the symptoms had vanished. 4 day dose of dexamethasone brought my platelets to normal but the damage had been done. I was severely anemic needing two iron infusions and vitamins d and b12 deficient. Just over a year later my platelets have been stable and normal. Vitamin D is normal but am still b12 deficient while getting injections every other week. My dad had ITP but they tell me it's not hereditary and that one of us have been misdiagnosed (he has passed.) When I research heaving bleeding I find it isn't normal with counts above 10. Will ITP return? Will I have the same bleeding? Is the heavy bleeding indicative of a probable relapse? Why did the symptoms go away when I was at my lowest count? Is the one time effective treatment indicative of complete or long term remission? The entire experience was very traumatizing. I have anxiety with every period and CBC count. To every question I ask the answer is "we don't know." Anyone else with similar answers or symptoms?

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Frustrated and Anxious 2 months 3 days ago #71713

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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ITP can be infuriating at times. Different people have different symptoms. For instance I have never had petechia even with counts as low as 2. I used to be frozen stiff and covered in bruises with counts below 30 but no more. After 4 years I suddenly started with nose bleeds but only with counts below 15 however in June my count was 6 and no nose bleeds. Unfortunately the answer 'we don't know' is generally correct.

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