Short story is that quite a lot of people feel like you and most stop warfarin and are glad that they did. To try and briefly answer some of your questions above

* Its not surprising that you don't feel 100% after 6 months. Quite a few don't. Some report feeling a step improvement after they stop, even if they're not 100%. It can easily take ~1 year to get back to being close to that.

* Having a CT scan or D-dimer when you stop doesn't really predict whether the clots recur. There have been quite a few studies on this. Similarly, if the CT scan showed an existing clot, it would be hard/scar and wouldn't really be affected by stopping on anti coag. Its less about radiation risk, more the fact that any information picked up from the scan wouldn't be that useful. If there was only a single clot, the strong likelihood is that that will have gone.

* If you clot again, you should know what the symptoms and probably get diagnosed/treated quicker than last time. There honestly doesn't sound any reason to extend your anti coag period from what you mention in this post. The negatives of extended lifelong anti coag are bleeding risk, bone density loss as well as having the millstone around your neck for life.

* If your INR has been in the therapeutic range, that is good, it sounds like the treatment has worked and you're ready to come off.

* There are quite a few threads like this, have a search for some. Some of the posters come back and report how they felt after stopping.

Considering the situation you describe, I can't imagine why there would be any physical need to continue taking Coumadin. And I'm a big believer that if the problem is that you feel anxious, you should treat the anxiety and not take unnecessary medication. Which I'm sorry, but especially for a young, active person to continue taking blood thinners when they don't need it, it just doesn't make sense. It is absolutely not a risk-free medication. Those of us who have to take it for life are simply rolling the dice on what's the biggest risk to us. We clot if we don't take it, we have a risk of bleeding if we do (which that risk increases more and more the longer you're on it).

As things stand now, you have no reason to believe you'll clot again (here on these boards it seems like it happens a lot more than it actually does in reality because the vast majority of people do their treatment and then move on with their lives rather than continue to participate in a support group which is no longer relevant to their life). So it just isn't reasonable to put yourself at risk for a bleeding event just to take a medication which is serving as a type of safety net in your mind. Treat anxiety with anxiety medication and/or therapy, but please don't take unnecessary medication for the rest of your life.

I wouldn't necessarily disagree with asking the doctor to complete 6 months of Coumadin. I mean, again it's probably not necessary, but it's only 2 more months, and if it makes you feel better to have a bit of extra distance from your PE event, then the risk of a couple extra months is minimal. And some doctors actually prefer a 6 months minimum for treatment after a clot.

I don't see what you really hope to gain by getting another CT. Clots actually dissolve and change in a very, very predictable way over certain periods of time. This has been well investigated, and it's exactly why there are protocols in place for length of anticoagulation treatment. You describe your clot as a "baby clot" which if it's so small, would have dissolved by now. At worst, even if it didn't break down, it's changed in structure from the time it was first formed and would be part of the arterial wall now, so blood easily flows right past it without clotting. So I don't necessarily think a CT would show some kind of "false negative" or anything like that, it's just again something which isn't necessary. Most doctors do not go back and do another CT scan. A d-dimer right now would be absolutely irrelevant since you're on Coumadin. I have known of some doctors who have done a d-dimer for patients like a month after finishing treatment, just more to ease their fears, but that can be a tricky situation because false positive d-dimers are pretty common.

If your doctor wants to test for clotting disorders, then I'd say go with whatever he recommends. I have kind of mixed feeling about that personally, because I feel like it's a little bit of a shot in the dark. I've had several different clotting episodes, a strong family history of clotting yet my testing is absolutely negative, and I've been tested several times by both GPs and specialists. Yet for those who find something, they are usually grateful to know. Still, some doctors test and some won't, and it depends a lot on your personal situation. If your clot was unprovoked, then probably they will test you. If it was the result of injury or surgery, then the will probably consider that the reason and might not bother testing.

As to if there's a chance of recurrence......Well, here's the thing, you have been through this already, and you know what it feels like. You will most likely realize even more quickly if something isn't right on the off chance you were to clot again. And yes, having a history of PE will get you the fast lane if you ever have to go to the ER with any problems breathing or pain that might be from DVT. Doctors are much quicker at diagnosing it when there's a history there, because they have some direction, as opposed to a whole host of possibilities that blood clots can seem like. Learn to trust yourself and your assessment of your own body.

It sounds to me as if you're actually feeling quite well physically for this point in your recovery. I'm so happy to hear that you've been exercising, and I can't imagine why you would have been encouraged to stay away from it more than just a few weeks at most. Getting some pain and SOB, especially during a muggy summer, is just par for the course. When you think about it, honestly most of us got some SOB when it's really muggy way before we ever got PE, we just didn't think much about it before. It makes sense that with a relatively recent trauma, your lungs are going to feel a little different in weather like that. You are still recovering, and will continue to do so throughout the next several months. My clots were a lot more severe than yours, but you know, it's been six years since my PE, and I still will have an occasional week when I get terrible stabbing pains in my lungs, right where it hurt during my early recovery. But I also get occasional pains from other places in my body which have been injured, like my arm I broke when I was nine, my knee that got busted up playing baseball and basketball, and the spot where I got an epidural from my first son. Now, I know nothing is actually wrong with any of those other things, but for whatever reason they just hurt from time to time. My mom sometimes gets pain in her fingertip which isn't even there because she had to have amputated several years ago! My point in sharing that is that our brains are so powerful, and they have a memory for the things we've experienced. That's why it's so important to treat anxiety if that's a problem rather than mask over it with something that really only feeds into it.

Talk about all of your thoughts and concerns and fears with your doctor when you see him, so that you can sort out what is the best and most productive course for you to take moving forward.

It's completely normal to have reservations about coming off warfarin. But, I am in the same camp with rosiethecat and shilosmommy on this.

Six months treatment is not always the protocol, depending on the extent of the clot. There are people who are on it for only 3 months. With that said, I agree that staying on it for a solid 6 month may give you a cushion of comfort without a huge risk so I'd discuss it with your doc. You could ask your doc for a d dimer test after treatment, just for some peace of mind, but as far as annually, that wouldn't prove much. For instance, if you had a normal D dimer at an physical in August, how is that going to assist with monitoring clotting activity until next August when you have an annual D dimer again? D dimers are good for assisting in diagnosis when you have symptoms of a clot.

My feelings on CTs are not based on fear of too much radiation but really, whether it's medically necessary. It's usually not necessary after treatment although I know for people who had large clots or some other complications, CT scans may be ordered at the end of treatment or in the middle of treatment, but otherwise there's no real medical reason to have it.

You also can't equate that still not feeling a 100% means you need warfarin. There's no connection.

The bleeding risks with warfarin or any anticoagulant is not to be taken lightly. I mean, as a long term patient on warfarin, I tend to not worry about it overtly, but I do recognize this is not ideal. But for me, the risk of bleeding is less than the risk of PEs based on my history. It's the same when you first start warfarin, the risk of not treating the PE is far greater than the risk of bleeding. However, once your clot is resolved, the risk of bleeding generally outweighs the risk of getting another clot. I would LOVE to not be on an anticoagulant. I would love it. I'm almost 50 and think, shit, I've got another 25 years or more (barring an early exit) on this stuff. Bleh. I accept it and don't let it hold me back from things, but it is something that is an increased risk as we age that kind of irks me.

One thing... you mention dying doesn't bother you. I would say that it does greatly, and it makes sense that it would because it bothers almost everyone, PE or not. I saw an interview with Dr Kevorkian once where he was asked if he was afraid to die. He paused and said he was concerned about it. So trust me, if he ain't quite comfortable with it, no one is comfortable with it, regardless of the cause. Asserting that you don't want to die from a PE makes it sound like you'd be perfectly ok with dying from cancer or a car wreck. I'm sure you wouldn't.

I think rationalization is something we do when we're trying to deal with emotional conflict. And I think rationalizing gives us a sense of control, over things we can't control . So to me as an objective person readying your post, I just think your anxiety and fear has you justifying things that aren't necessarily logical. I wouldn't dismiss the anxiety and fear because that really may be the issue more than telling yourself you're not ready or justifying why you should stay on it. So I would try to address the anxiety part first and foremost.

Anyway, I would have a serious discussion with your doc about all your concerns and I would ask him also to explain why he's recommending his approach. Sometimes having your doc's thought process helps sort through things as well.

You will be ok!

You guys make great points, at least from different perspectives that I never really thought about. The thing is as a regular person, who's first experience with a PE is very limited, you get that eerie awkward feeling that you don't know what to expect. I've kept my mind simple and focused on getting better and healthier but when it comes to clotfree.. there's those questions again... "what if's".

I have learned to trust myself to an extent, and I guess i need to work on that. There are those days with twings and chest pains where you're like ... oh ****, im definitely clotting again.. and also days where you can go out ride a bike for an hour straight and feel invincible.

Maybe it really is time to learn to trust my body and just go with the flow with what doctors say. I just feel if there is a next recurrence, the next mental breakdown will probably hit harder than the first. My doctor has noted she believes this to be an isolated incident, but at the end of the day, its as what you guys have said, i just don't trust myself.. bummers

A. I will tell you that CT scanning or V/Q scanning "to see if the clots are gone" is totally useless. I've been in nuclear medicine over 20 years and the only thing repeat CT or V/Q scanning is good for is if you have recurrence of symptoms. They can compare the location of the clots now with the ones before and try to find areas where there are obviously clots that weren't there before. If your new clots are in the same place as the old ones, it's pretty much a clinical/lab decision if you are having a recurrence or not. If you have the CT it will probably still show clots, because they don't always just disappear. Sometimes they become encapsulated by the body and stabilized (sort of like scar tissue). So there is no test that can tell you when you've "recovered". It's all the way you feel physically and it's different for everyone. Frustrating, but true.

B. Warfarin or any other anticoagulant HELPS prevent clots from recurring. There is no magic armor or 100% safety, even on anticoagulants. My father had a therapeutic coumadin level (checked weekly by his nursing home) that was stable for >3 months and still was admitted to the hospital with bilateral leg DVTs AND a retroperitoneal bleed. He had to have Vitamin K for the bleeding, because that was more emergent, then they placed an IVC filter to handle the clots. So it's still possible (though rare) to clot on warfarin or xarelto or whatever.

C. There are studies out there that suggest warfarin might increase the risk of osteoporosis with long-term use.

D. Every day that you're on anticoagulants you take the risk of injuring yourself badly enough to bleed profusely. If you're like me, with genetic predisposition to the tune of mother, father, both grandmothers, aunts, uncles and cousins, it's fair to say that the chances of clotting on a day to day basis over the next 30 years of my life expectancy is higher than the chance of catastrophic bleeding. If you're in the general run of PE survivors who have a much lower chance of recurrence, the risks of anticoagulants outweigh the benefits. And that's always what you have to assess in any medical treatment--benefit vs. risk. It's why I don't get tested for genetic abnormalities--I'm on warfarin for life, so what difference does it make why I clot if I have to take the chance of clotting again for 6 weeks with no anticoagulant to get the testing. It won't change my medical management, so risk outweighs benefit, even though my BS in genetics is dying to know the cause of my family's clotting abnormality.

I say if you're not genetically predisposed and you have no other high risk factors (cancer, autoimmune disorders, previous stroke, atrial fibrillation, etc.) that you should take your doctor's advice and go off the anticoagulants. It's better for you in the long run.

Hi,

Was there a particular reason for your clot?

I have just had my 6 month review after anticoag for a single PE (no known cause).

I have been told as I am young (25 at the time of my clot) and male and they do not yet know why i clotted, I should stay on anti coagulation for the rest of my life. As such, they are undertaking the Thrombophilia screening (genetic testing) whilst i remain on Warfarin. This is something 2 different hematologists have said. At the point of clotting, they said that I would be on Warfarin for 6 months. As a plus, they said i can switch to Xarelto! Seems like the general consensus amongst the medical community has changed drastically, with the UK wanting to emulate the management strategies run by the US.

Indy

pubbypaws, I totally get that thing about not trusting your body. I felt like that a bit too. But whether or not you trust your body has no affect on whether or not you clot. That's what I had to remind myself of, that nothing I think or feel on an emotional or intellectual level is going to prevent a clot from happening. So why not just let that go. What we can do is try to say healthy, active etc. I mean, that is within your control.

I have to echo what everyone else has said. It might be good to ask your doc to stay on until you get to six months (that's pretty standard) but I don't see a reason to stay on past that or to get a repeat CT.

Like others have said, a repeat CT shows you nothing useful. If the clots are still there, they're stable. If they're gone, that doesn't mean you're completely recovered anyway. Plus, there's all the radiation (200-300 times an x-ray).

Plus, staying on warfarin isn't risk-free anyway. There are different considerations if you're going to be on these meds for life and not all of them are good. I would never choose to stay on warfarin for the rest of my life if I hadn't already clotted three separate times. But, it is definitely the lesser of multiple evils.

Hang in there! Definitely work on your anxiety and concern ... that'll put you on the fastest path back to "normal"...

Indy, They generally do lifelong anti coag for recurrent PEs/DVT (UK, nice guidelines)
http://cks.nice.org.uk/anticoagulation-oral#!scenariorecommendation:33
As they mention at the start though, experts are not unanimous. I think the usual guidelines are for 6 months for a single case of PEs.

Hi, just wanted to weigh in that I am one who is a lifer on warfarin after a single clotting event. HOWEVER, mine was idiopathic and a massive bi-lateral event. Furthermore, even though genetic testing proved negative, I also have a STRONG familial medical history of clotting (3 out of 4 grand-parents, father, aunt, cousins, etc.).

Sooo, considering the extent of the clotting event and the strong familial history with clotting, both my internist and I did not want to risk my clotting again. However, this decision will/might be re-evaluated as time passes.

Where D-Dimers are concerned, I agree that there is no known reason to test regularly, as a negative D-dimer is not a sign that you will never clot again.

Where scans are concerned, my doctor did opt to re-scan at the 6 month mark, simply because one of the clots was very large and she wanted to ensure that there was no permanent damage from that clot.

As others have said, warfarin is not without risk and, as I head towards the second anniversary of my PE, I am constantly aware of this. For me, the controls are just an annoyance, compared to the risks of uncontrolled bleeding should I cut myself or be involved in an accident. And I do hate having restrictions where meds are concerned, as I am dealing with arthritic pain... which is very hard, if not impossible, to manage with Tylenols only.

In the end, it's all a matter of balance and assessing what is the biggest risk for you.

Where the anxiety is concerned, it is par for the course after such a traumatic event! Learning to deal with it and getting the help you need can do wonders in that department.