Bleeding symptoms

Hi. I first just wanted to say how much I love this website. When I was diagnosed with ITP I was very upset and depressed. I don't know anyone else with ITP. It has helped me so much to find this website and see other peoples stories who have ITP and to know that I am not alone. I haven't had ITP for that long but so far without treatment my counts seem to range from the high 20's to the mid 40's. Even when my counts are in the mid 40's I get spontaneous bruises all over my legs, a couple of small blood blisters in my mouth, and my gums bleed when I brush my teeth. Is it really bad that I get bleeding symptoms at higher counts? Does it mean that I am more likely to get a spontaneous brain or GI bleed with higher counts? After a horrible experience tapering off steroids and ritauxin not working I have decided to take a break from the horrible ITP treatments. Now with these bleeding symptoms I am wondering if I should be trying to get my platelets higher. Has anyone else out there had symptoms at higher platelet levels? Any advice is greatly appreciated. I eat a diet high in vitamin k with lots of green vegetables but it doesn't seem to help that much.

Jen:

It is unusual to have symptoms like that at your count, and there could be a reason. You might mention it to your Hemo. Sometimes ITP can affect platelet function, and sometimes there are other diagnosable bleeding disorders that can occur simultaneously with ITP. I'd ask him to check it out.

Jen,

this is how I was and how I found out my platelets were low I have bruises on my thighs nasty ones that didn't hurt and my gums would bleed when I brushed my teeth, when I went to my gp my count was 45!

Thanks for the reply sandi. I called my hematologist and he said that with ITP bleeding symptoms at higher counts is rare but it can happen. I had a blood smear when I was first diagnosed. It was consistent with itp. I've also had weekly CBC's and LDH. My INR and PTT were within normal range. Are there any other tests I should ask for?

Thank you for the reply CHELS04. It good to know that someone else has had bruising and bleeding gums with a platelet count in the 40's. It makes me feel much better.

There are other things you could be tested for, such as von Willebrand disease, but with a normal PTT that might not be necessary. It's odd that the PTT was normal if you are bleeding more than you should be. Was that tested at lower counts or normal counts?

Some meds and supplements can also hinder clotting, such as Vitamin E, Fish oils and NSAID's.

Here is an interesting article about inherited thrombocytopenias in which function may be affected.

Prothrombin time is tested using plasma without platelets, so it does not reflect how well the platelets may or may not be doing their role in the clotting process. As an example, aspirin can interfere with platelet function without it showing on a PTT.

Here is a good article that discusses many drugs, etc., that interfere with platelet function.
asheducationbook.hematologylibrary.org/content/2011/1/391.full

Sandi wrote: "Here is an interesting article about inherited thrombocytopenias in which function may be affected."

It did not post.

Uh oh. I was just coming to post that for someone else. I'll see if I can find it.

Found it!

www.bloodjournal.org/content/103/2/390?sso-checked=true

Thanks for the articles sandi and Rob. They are both very interesting.

Good point, Rob!

Like you , I get bruises and such at higher counts. I had a normal PTT last time it was checked. But my hemo did find several micronutrient deficiencies, plus pointed out that between my very pale skin and minimal subcutaneous body fat, even a minor bruise could look impressive.

Thanks for the response Aoi. I am also pale and skinny so mabe my bruises do show up more. I always get nervous when I get a bunch of new bruises, so it is good to hear about others who get them also. I should probably also be tested for vitamin deficiencies because I tend to get tired all the time.

In a book about trauma medicine I read about bruises. I had suspicious bruising for several years before I was diagnosed with ITP, and still regularly find bruises in odd places. I also get them after blood draws, injections of almost any kind, and a few times, from a blood pressure cuff. Meanwhile, my platelet count is in the safe zone. Oh well.

I think my experience will answer your question.

A couple of months ago I had nosebleeds during 45 minutes, gums bleeding, etc. I thought my platelets were low. I went to the hospital and asked for a CBC. Turns out I was at the highest I have ever been since I had ITP. I was at 136. You normally don't have any symptoms with 136. Usually, I don't have any symptoms until the count is under 25. So what happened? No idea. The doctors have no idea either. The only reasonable answer is that ITP also makes platelets less efficient, in my case. Again, this week, I had a little bit of blood in my nose and red dots on my feet. Last CBC I was in the 300s. As i'm having symptoms i'd suppose i'm around 30 at the moment. Gonna go get a CBC monday and see what's happening.

fredericdube I don't think one needs to have low platelets to have a nose bleed last a while. I'm the ITPer in my family but it was my little sister who used to have horrible nose bleeds. A couple years ago she was chewing a tortilla chip and it got her gum and it was hours and a doctor before it quit bleeding.

We are just all different.

Hope your count comes back good.