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Bleeding symptoms

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1 year 1 week ago #73321 by AnnaM
Bleeding symptoms was created by AnnaM
Hello everyone, I was wondering about bleeding symptoms in relation to platelet counts. When I was younger I hovered around 80G and I had menorrhagia, even though it’s not a particularly low count (it’s under control now, thanks to an hormonal IUD–I was resistant for years, but I have to admit it’s life-changing). Nowadays my count is between 30-50G, and I often have very dark bruises (almost solid black) and scattered petechiae on my legs. 
Would you say that is typical? What’s your experience with bleeding symptoms wrt platelet counts? 

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1 year 1 week ago #73322 by MelA
Replied by MelA on topic Bleeding symptoms
Sorry no one has been able to respond to you AnnaM.   I've had ITP for many years and have found all of us are different in symptoms.   I am not sure what a count of 30-50G means.   When I was diagnosed I looked like I'd been beaten with at 2x4 there were so many bruises on my body along with petechiae - when my count went way down after a tetanus booster I had no symptoms at all - when I was put on a baby aspirin a day to prevent blood clots after knee replacement my count went up in the normal range.   I do have many very dark red/brown bruises on my arms from bumping them - usually they don't bleed unless the skin rips open.  

I think I'd say there is nothing typical about ITP.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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1 year 1 week ago #73324 by AnnaM
Replied by AnnaM on topic Bleeding symptoms
Thank you for replying MeIA! 
That is the conclusion I’m coming to: that every patient with itp is unique… what makes it frustrating for me is that I’d like to know if my symptoms and lab results are weird because I have atypical itp or because i don’t have itp at all. I know I'm not likely to find a definitive answer in a forum, but the scientific literature is frustrating. I feel like every time I try to dig for information, scientific papers fall short: “we don’t have enough data on pregnant itp patients” “we haven’t tested this on enough patients” “here is this algorithm because we don’t have the tests to determine who has itp” etc. etc. 
I even had the opportunity to see a professor who specialise in rare genetic platelet disorders and at first she said she thought I did have itp, but now she’s saying it might be genetic after all? It all seems very murky to me. 
I know it’s nobody’s fault, it’s simply where the science is as of today, but I can’t help trying to find if some people have a disease that looks like mine. 
(PS: 40G simply means 40,000, or 40 as we’d say as patients. 40G is just the way it’s written on my labs. Maybe it’s a french thing?)
But thanks again for confirming that bleeding symptoms don’t really correlate with platelet counts for you either! <3

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