I'm new to all of this, so I don't have any good answers for you. I can see why you would be frustrated, though. I would be confused as well.

A couple of questions come to my mind, if you don't mind clarifying for me.

1. What do you mean by a low dose of warfarin? Would they stop targetting the 2 - 3 INR range and just keep you on a little of it? Or maybe a lower range?

2. What are the natural ways of keeping your blood thin?

Also, as I was researching clots after my diagnosis, I was thinking I had read somewhere that there was some research to show that being on a low dose of aspirin ongoing (instead of warfarin) might help prevent clots. I don't remember where I had read that, so I don't know if it is close to accurate. I'm hoping one of the more knowledgeable members here can clarify whether this is a valid option or not.

Good luck with everything!

I can't claim to be more knowledgeable but I do know how to research.

Here's more confusion for you (sorry)

If you're looking for an absolute answer to your question (who to believe) I doubt if you're going to find it, even in the medical literature.

Even being on full dose warfarin doesn't prevent more DVTs (or PEs) but the chances are VERY high that it will prevent them---- as long as no other extenuating circumstances exist and if the person stays therapeutic.

Here is one long trial of low dose aspirin (PREVENT):

"Of the 253 patients assigned to placebo, 37 had a recurrent episode of DVT or pulmonary embolism compared to 14 of the 255 patients assigned to low-dose warfarin. This finding was the equivalent of a 64 percent reduction in risk for those treated with warfarin. Results were similar for all patients men and women and those of all ages including those with factor V Leiden and the G20210A prothrombin polymorphism, common genetic variants that increase the risk of blood clots."

http://www.nlm.nih.gov/databases/alerts/warfarin.html

As can be seen----- 14 out of 255 patients on low-dose warfarin still had reoccurence. But the article didn't say why those 14 had a reoccurence. That might show a reason why they did. If those patients developed cancer or had an operation or a fall during that time........ I'd have to read the entire study.

Too bad the PREVENT study was stopped early which leaves me wondering why it was.

Then there's this about aspirin and reoccurence of DVT/PE

"The study presented today at the annual meeting of the American Society of Hematology (WARFASA study) investigated patients with a history of unprovoked VTE. They were enrolled after they had been treated for their VTE with warfarin for 6-18 months and then randomized to aspirin or placebo. It was a double-blind study.

Patients were followed for an average of 2 years. Primary endpoints were symptomatic VTE and fatal PE. The aspirin dose used was 100 mg a day. 403 patients were enrolled, 205 of whom received aspirin, 198 placebo.

The study found that aspirin was effective in preventing some clots: recurrent VTE occurred in 11.0 % of patients treated with placebo and in 5.9 % on aspirin.

This was a 40 % risk reduction. Major bleeding and clinically relevant non-major bleeding occurred similarly in both treatment groups.

Thus, the appropriate conclusion that aspirin was safe and effective in preventing some VTEs. A few limitations of this new study need to be mentioned: It has only been presented and published as an abstract, not yet in a peer-reviewed journal; and a follow-up study needs to be done to see whether the results can be confirmed."

[Note the use of 'some']

So, I'd guess and this is only my guess----- either aspirin or low dose warfarin will be recommended by any doctor depending on almost a coin toss. (just kidding!)

There are plenty people who have done one or the other and had success. Those are testimonials only but that doesn't negate their experience.

Good luck with what your choice is----- the chances are very good for both.

Hi Daffnae,
By low dose, I mean they lower your INR target to 1.5 -2, I'm still at7 mgs to just sit in this range, and Cave, Thank you for all that, it does seem to me like they are all just flipping a coin and going with it, what was interesting with the hematologist, he was very dismissive of Asprin, said it was in the same bucket as fish oil, yet I have a friend who has had several DVTs and her hematologist put her on prescription fish oil, and I have read that you can't take fish oil with Warfarin because it thins the blood...so who knows..its all very conflicting advice . which I guess is why I'm so confussed, i am thinking of getting a second opinion.., at the moment its all as clear as mud in a beer bottle!
Daffnae, sorry I almost forgot your other question...Fish oil and vitamin E, also ginko something (i.ve forgotten the name sorry) and a lovely lady here also has told me of an enzyme that also has a thinning effect, my next port of call is a natropath..
Thanks for replying guys :)

You know Cave, I've just re read that link, and I'm pretty ok with that, it does seem very promising, certinetly something to think about and remember when I start to freak out as I ofetn do!
Thanks again

I know RetiredNavy has been on low-dose warfarin for a really long time now. Thought his last clot was in the 80s or something. Maybe he'll pop in and give you more information on the PREVENT study.

Here's the thing. In my understanding, a lot of docs don't want to recommend herbal aids with things. They don't have the research behind them, a lot of them aren't regulated, and the doc doesn't want to set himself up for a malpractice suit by telling you they are fine and helping you with them, only to have you re-clot again. You'll have to find information on your own or talk to some sort of herbalist or holistic practitioner to get guidance with an herbal plan.

Honestly, I don't know of anyone who has gone off the thinners and kept their blood thin naturally. And why is that any better than warfarin? There's no way to monitor it and the hospital may not be able to stop the effects in case of an emergency. If it is just as effective as warfarin, IMHO, it is just as dangerous. Being herbal or "natural" doesn't change that fact. Warfarin itself (I thought) comes from a grass or clover of some time. It is actually pretty "natural" from some respects and it has the advantage of being processed in a laboratory.

Do you have a genetic clotting factor? Do you know what caused the clots in the first place? Those are things to consider before going long-term on the warfarin.

And, it doesn't sound like you clicked with this hematologist at all. I don't think another opinion would be a bad idea. Might help you. Just make sure you write down your questions and take them in. Make sure you get all your questions answered and you have the information you want.

Ultimately, no one can force you to stay on or come off warfarin. It really is up to you and your comfort level. YOU get to make this decision, so don't feel like you're getting pressured one way or another. Do some research, make sure you understand the risks either way, and go from there.

My hema has said I should do 12mths on warfarin then low dose aspirin for life after i come off the warfarin. The low dose aspirin reduces risk of clotting by about 40-50%, for me that is enough reassurance and I am confident to proceed with this plan. So also consider aspirin as an alternative to warfarin and 'natural' blood thinning.

I think your hematologist sounds rational, actually.

Thanks again for your replies...I guess that I am looking for someone to make the decision for me and thats just not fair or the right thing to do...
And the Hematologist proably is being rational, but would it have killed him to invest just a fraction of emotion and be a little more interested and reassuring?..I think not, however on the other hand , if I get another clot, there is a very real chance that it could be fatal and that is where I find all of this so hard to make the decision, I see this as a huge gamble amd if I happen to lose then the outcome is not that pleasant..
I just wish that you had this happen, you get better and thats it,..it would make things so much easier!

Ha, I know! I think sometimes there are doctors who have great bed side manners and personality plus, but they stink as doctors. And then there are those who have the personality of a turnip and are missing an empathy chip in their brains, but they know what they're talking about. I'd rather have someone be very plain spoken and straight forward with me. That actually makes the decision a little more easier for me.

I have a GI doc whom I've been seeing for about 10 years. He's the best mix- great personality AND a kick ass doctor. He's very compassionate, except there are many times when I'll ask his opinion on something, and he'll look at me like I'm out of my mind, and tell me not to do whatever it is I'm asking, and I'll just laugh and say, well god, you don't need to holler. And then he kind of chuckles. He's just a straight shooter. I get the answer and then I don't need go deep into contemplation about it any longer. He makes it easy for me.

Also regarding aspirin, here's a link to information provided in a study referenced on Clot Connect:
http://professionalsblog.clotconnect.org/2011/12/12/aspirin-%E2%80%93-does-it-prevent-dvt-and-pe/

Here's my thing on natural anticoagulation. If it was truly effective, most people would opt for that rather then taking warfarin, right? It's simply not reliable, in my estimation. But that doesn't mean you can't take fish oil or vitamin E or whatever. Just means you shouldn't hang your hat on the efficacy of it.

And I've taken fish oil supplements before warfarin and during. And in fact, I've recently stopped taking it because I think I'm wasting my money given that I eat well enough where I shouldn't need supplementation. It may impact your INR, but then all you need to do is let your doc know you're starting it, test your INR for a couple of weeks after and see if it has an impact. If so, they'll adjust your warfarin dosage.

Regardless of your Hema being an ass, you just have to assess the information and facts that you do know. And then based on that, decide. All of this is manageable. It really is. I think there is something very liberating and freeing about having options. After my second clotting event, my hema said it was my choice whether or not to stay on warfarin but his recommendation was that I stay on it. It's just a recommendation, and it was my decision on what to do. It's my body after all.

Take a step back from all of this and put it on the back burner for a bit. Sometimes some distance and not thinking about it for a bit makes things clearer.

Am I missing something?

Was/is the question that richeal asked is about going on low-dose warfarin AFTER having completed the necessary months of warfarin for her condition------NOT going on low dose INSTEAD of full dose warfarin while in active treatment?

richeal, I guess you're the only one who can clear that up.

And richeal---- you said "if I get another clot, there is a very real chance that it could be fatal".

Well, umm, yes------- but with the knowledge that you now have I would think that you would be very attentive to any problems starting to arise and at the very least---- go to the ER and loudly announce that you've had PE's before! That should get everyone's attention.

But I don't think it would come to that-----we all stand that very slim chance. When I 'should have died' (and many others here also) was before their first PE that was totally dismissed and ignored by a numbnuts doctor ------ but we're still here. AND going on the freeway almost every day, BTW. (grin)

My question was going on low dose after finishing my yr treatment , which for now is what I have done..
I guess It's hard when you have conflicting advice from the professionals..and the more I think about this the more anxious I become, so maybe taking a step back is needed..

My doc knows me and he has a few PE patients so he knows what he's doing, I thought that I would hit one year and be so happy and free, but it hasn't gone the way I thought..

In a perfect world all my worries and questions would be answered and life would go on..sigh...Is it just me and my anxiety talking or does anyone else find it confusing that some docs prescribe to Asprin, while some dismiss it entirly, some advocate low dose while others say get off and some say do what you can to keep your blood thin and then others say you'll be fine, come see me if it happens again..
I guess right now my anxious thoughts are speaking out loud, but it's so frustrating and confusing..

The biggest question i have is ..why are we more likely to clot now , just because we have had a clotting incident?,,is it like muscle memory, does your blood now remember it and throw a clot?..do I make any sense?
Noone can answer that question for me, not that it really matters, its just one of the million thoughts that goes round and round in my head :(

My husband went through similar experience after a sudden PE/DVT. There is nothing more frustrating than getting conflicting information. I am a knowledgable doctorally prepared nurse practitioner and carefully reviewed the medical literature on this topic. 3 different vascular surgeons told us 3 different recommendations. This particular vascular surgery practice does not let you see the same physician, you have to see whomever is there and you never know whom it will be. We do not go there anymore! The literature presents a variety of arguments for how long to stay on warfarin after PE,. We sought an opinion from a hematologist at a highly respected academic medical center, and he acknowledged that there are a variety of arguments for how long to stay on warfarin after PE. Since the cause of my husband's PE is unknown (no clotting disorders ever found), the hematologist recommended warfarin for life, to maintain an INR between 2.0 and 3.0. He said just because we cannot find a clotting disorder, does not mean you don't have one, and I presume you probably do. My husband has done well with this for 3 years, despite a few unrelated surgeries and 2 injuries. His warfarin dosing is well-managed by a coumadin nurse in a cardiologist's office, recommended by the hematologist. He gets fingersticks with instant results and dosing recommendations. He sees her about every two months. Hope that helps you in some way.

I don't think anyone misunderstood your question, Richeal. I think some of us, well me anyway, were responding to the underlying discussion about doctors who seem disinterested and this idea of a natural approach, as well as when you have what is perceived as conflicting info, how to find a way to move forward. Whether we're talking about low dose warfarin, no warfarin, natural alternatives, whatever, it's still all about gathering the information you have, weighing pros and cons, and then making a determination about what you want to do. I mean, that's how we make a decision about anything, right? It takes courage to say, I'm choosing THIS, whatever this is. You're courageous; it's just that your mind had that continuous loop of what ifs and what abouts running through your head. I TOTALLY get that. As someone who has a constant play list of thoughts in my own head, it's crowded in there! And it often prevents me from moving forward or making decisions or assessing things from a logical standpoint, until I turn the switch off and regroup. I have to consciously do that sometimes because I get overwhelmed sometimes too.

I think coming to grips with the fact that there may not be one right approach or that all your questions may never be answered is important in moving forward. Otherwise, we just sit and spin and spin, never moving ANYWHERE. That's a misery in itself.

richeal said:

*** My question was going on low dose after finishing my yr treatment ****
Thank you for clarifying that.

JSSNP----
***The literature presents a variety of arguments for how long to stay on warfarin after PE,***

Do you mean 'full dose' not LOW DOSE? And after just one PE?

My doctor had me on 6 months after first PE. Then full dose (target INR 2-3) for life. "Idiopathic".

**** just because we cannot find a clotting disorder, does not mean you don't have one,****

Bingo---- So many (myself included) get caught up in the latest information----- not realizing that medical science, as all science, keeps on evolving.

Many VTE researchers feel idiopathic clotting patients "may" have an unknown clotting conditions yet to be discovered. After all, Factor V Leiden was only discovered back in the 1990's so it is conceivable there are other conditions (genetic or not) which may contribute to reoccuring clotting episodes in people who have not been identified as having a known thrombophilia, or, have other risks factors known to increase clotting occurences.