ITP and clotting

This isn't discussed very often, but I thought I would bring this up since I've seen individuals lately with counts that have skyrocketed.

As important as it is to keep counts from going to low, it's also important to try to keep counts from going too high. I know it seems like a great thing to have counts above normal, but it can also be a scary thing. There are a few links between ITP and its treatments that indicate that clotting can be a increased risk...more so than for the average person.

There is a recently discovered link between splenectomy and thrombosis.


thorax.bmj.com/content/60/12/1031.abstract

bloodjournal.hematologylibrary.org/cgi/content/full/114/14/2861

33% of people with ITP also have Antiphospholipid Syndrome.

harvardatoz.demo.staywellsolutionsonline.com/71,AZ_d0036

www.ncbi.nlm.nih.gov/pubmed/16680753

bloodjournal.hematologylibrary.org/cgi/content/full/116/16/2871?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=ITP+and+APS&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

People with ITP tend to have platelet microparticles (platelet fragments), which can also contribute to clotting.

www.ncbi.nlm.nih.gov/pubmed/8303669

abstracts.hematologylibrary.org/cgi/content/abstract/106/11/2637?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=ITP&searchid=1137555891528_153&FIRSTINDEX=10&volume=106&issue=11&journalcode=ashmtg

Also, counts that rise too quickly can raise the risk of clotting.

I am one of the people who has APS antibodies. I had ITP for 9 years before I was tested for APS, and that was only because I begged a doctor to test me. I'd asked my hematologist twice in the years prior, but he always told me I couldn't have it because "my counts went too low" and those with APS tend to have mild ITP. Wrong. My last count was 280k - a nice, healthy number. I worry at that count though and I take daily aspirin (doctor's advice). I'd really rather be between 50 and 100.

Most of us think that because we have ITP, we do not or can not have a clotting problem. If anything, those with ITP have an elevated risk. Please be vigilant and ask questions if you feel you are at risk. People can have blood clots with low counts...you don't have to have high counts for that to happen. As time goes by, more and more research is being done and I keep reading more articles that link ITP to clotting incidents. This was nearly unheard of when I was diagnosed in 1998. Scary. I am seeing the possibility that the TPO's might be used for purposes other than they were intended.

Bottom line: "Normal" is not necessarily better. Read, do your research.

Sandi, what (symptoms?) made you insist that your doc have you tested for APS? Do you feel it would it be wise for most ITP people to have that test? Or just those with certain symptoms?

Do you think clotting during the normal monthly cycle for women would be an indication of clotting elsewhere?

Karen:

I didn't have any symptoms. I did have a positive VDRL years ago which is one indication of APS. That should have been enough to be tested and eventually was the deciding factor, plus ITP, for my Rheumatologist. I just had a feeling I'd have the antibodies.

Gretchen:

I really don't know about clotting during menstruation. I had that also when my counts were down and told my hematologist. He said it was common with ITP, so I didn't worry about it. I did wonder why though; only when counts were low, seems odd.

So you can have the same risk of blood clots even at low counts? I thought ITP would reduce the risk...guess I was wrong.

If you have certain risk factors, yes. There are some people with ITP who are on blood thinners with low counts, and still clot.

What are those risk factors? If you don't have them, does ITP lower clotting risk?

There are several risks, one of which are the platelet microparticles. There is no way to know if you have them because they cannot be tested at this time.

I don't know all the risk factors, just the ones I mentioned above. I'm sure there are more though.