blood pooling causing blood clots?

[cbhowell]

Just read something about that in a previous post. Is this common with POTS?

[Merrill]

I wonder what post you refer to... I don't think this is true, though one of my cardiologists warned me away from knee-high compression hose, saying that they could cause blood clots--depending on how they hit at the back of the knees.

[briarrose]

That's strange because I think that's the kind of compression stockings they put on you after surgery (top of thigh high anyway) to prevent blood clots.

[Merrill]

Briarrose, what do you mean by "top of thigh high"?

Thigh highs and to the waist hose are the best (and only) kind I was told by my 2nd cardiologist to wear because there's a risk of blood clots if you wear the ones that can reduce or cut off circulation behind the knee. (That's what I was trying to say in the middle of the night last night...)

m

[MomtoGiuliana]

I am very certain that POTS patients are not more likely to develop blood clots. That has nothing to do with autonomic dysfunction. But, I see your concern. If blood is more likely to pool, is it also more likely to clot? It's a reasonable question to ask a cardiologist who has expertise in POTS. I think the answer would be no, only b/c my doctor has never told me I run that risk, nor have I read it anywhere.

[briarrose]

This is what I mean they use after surgery:

http://www.orthobrace.com/fla/category/comphosiery.htm

I was talking about post-surgical above, this is why

http://www.activainfo.com/journalarticles.asp#postsurg

But POTS patients are recommended to wear full length panythose/compression hose.

[Michelle Sawicki]

I asked Dr. Grubb this question before. I naturally thought that since we have trouble with pooling blood we must be at higher risk for blood clots. However, he told me that some research has suggested just the opposite...that we are at less risk. I wish I could remember exactly why the research suggested that. This was about a year or two ago, so I don't know if beliefs have changed since.

Michelle

[POTSparent]

I'm wondering if Dr. Grubb was referring to research, as noted by my daughter's POTS specialist, that suggests that dysautonomic patients are more likely (higher percentage than norm) to have DIFFICULTY in getting their blood to clot? That's the case with my daughter that has to wear a Medic Alert tag for bleeding should she be in a traumatic accident.

[MomtoGiuliana]

POTSparent

What is the name of your daughter's blood clotting condition? I just wonder if I should also be tested for it. I had such significant blood loss during childbirth that I had to have a blood transfusion. I have fairly heavy periods too. I've never noticed significant bruising problems though, or excessive bleeding when I get a cut. What symptoms did your daughter have that led to testing or the diagnosis?

Thanks!

Katherine

[scamelo]

This is interestng information about clotting time. a few years ago I had surgery and they did a clotting test. I think the normal times for clotting are 2 mintutes to 8 minutes ( going by memory so could be off). My moms clots in 2 mnutes and she had a stroke a few years ago from a clot. My test time was 8 minutes, so it clots very slow. I don't hemorrage or have to wear a bracelet but this is interesting information.

[calypso]

I definitely am a clotter. Although I have never had a major blood clot, I did have two small ones in my placenta when I had my daughter. I was tested for clotting disorders and was found to have a genetic mutation that is present in 1 in 50 people, mostly of European descent. So maybe any abnormalities of blood clotting (too much or too little) is a problem with POTS, or maybe just coincidental since these are fairly common problems in the general population.

[POTSparent]

MomtoGiuliana:

Actually, we didn't so much suspect a bleeding disorder with our daughter. We did know that she had low blood volume as part of POTS. Our doctor in Toledo,OH, however, asked some very specific questions about the nature and extent of our daughter's bleeding during menstrual periods, since certainly heavy bleeding would add to the low blood volume problem. She was asking the questions because she considered bleeding disorders to be found at an unusually high rate amongst POTS patients. Ultimately, she tested for two bleeding disorders of a slow-to-clot nature: One was von Willebrand's disease and the other was Delta Granule Storage Pool Deficiency of Platelets. At least with the latter, nicknamed SPUDS for some reason, I'm told that they didn't have a test to verify the suspicions that this condition existed until about a year ago. And, as of a few months ago, Toledo was the only place set up to perform the tests. Anyway, the condition (the Delta Granule etc) doesn't impact our daughter's day-to-day affairs, but it was suggested that she get the medic tags in case of an accident.