I don't think he's wrong in many respects. The general protocol for long term anticoagulants is having another DVT. That's why I'm on warfarin long term. And for me, I'm not high on the Xarelto bandwagon quite yet myself.

And I think he's spot on with prevention except I do think you can have a desk job if you're able to get up frequently and move around a bit. Everything you read about DVT prevention addresses mobility and hydration, and awareness. Very few legitimate sources list supplements as good prevention, although I'm sure if you want to add an aspirin or vitamin E or ginger or something else to your regiment, it wouldn't hurt (provided you can take those things). Here's a site that lists some prevention ideas.

http://www.everydayhealth.com/health-report/dvt-pictures/prevent-deep-vein-thrombosis.aspx#/slide-1

Does he know what could be causing the high hemoglobin (sometimes dehydration can cause that) and if he thinks it puts you at greater risk for more clots?

I think you have two choices: Take his preventive measures to heart or get a second opinion. I know it's hard to believe but sometimes the answer is that you're done with treatment and now you have to just go one and live your life. But if you think you need another opinion, certainly do that. Me personally, I have no issue with alternative medicine except I think for some things, it's a waste of time and money. When it comes to DVT prevention, I think it's a HUGE waste of time. But that's me. Others may feel differently.

My opinion is that if you can get a 2nd opinion, it never hurts. It gave me tremendous relief to have two medical minds, and sometimes their opinions or instructions differ, working on my case.
Hang in there!

Did the hematologist do genetic testing and all the tests came back negative? Did he say you had an idiopathic blood clot? Is that why he said that nothing can be done? You really don't want to be on blood thinners at this point if you have no genetic reason to clot and you don't have large residual/chronic clots blocking the flow of blood in your veins. All blood thinners have risks and should really only be used as long as necessary.

His comments about the new medications are partially true - they were developed so the drug companies can make money. But there has been enough research to know they work for DVT and in some cases better than Warfarin. And my hematologist told me that Xarelto was no more dangerous than Warfarin if I was in an accident. That vitiamin K won't reverse the effects of Warfarin fast enough to do me any good if I was in an accident and that the protocol would be the same one they would use with Xarelto. And she didnt tell me that because she prescribed the Xarelto and was trying to reassure me -- it was my interventional radiologist that prescribed it.

I really don't understand the aspirin comment though. My hematologist and interventional radiologist both reccomend it after you come off of the blood thinners. The vascular surgeon I saw before the interventional radiologist also recommended aspirin. He went so far as to say that healthy people should take one 325mg aspirin 5 to 7 days every day before they fly over a couple hours, that a lot of DVTs could be prevented by this. He did it himself. And since he told me that I have run into several other doctors that do,the same thing.

I think he is right about activity. You really shouldn't sit more than an hour without getting up and moving. Sitting too much has been shown to increase the risk of clotting. And if your valves have been damaged you should be wearing compression stockings -- knee high 20-30 would probably be enough. The compression stockings help prevent blood pooling and you don't want your blood pooling.

I'm a believer in second opinions. If I hadn't sought one out I would still have an occluded iliac and I would be in pain. Most insurance plans do offer the opportunity to get second opinions.

Historically, aspirin has always been recommended for DVT/PE patients who completed anticoagulation treatment. Problem is, though aspirin (much like Ibuprofin) has anti-platlet abilities it doesn't do much to prevent vascular clotting (different clotting mechanisms). Several studies back around 2005 timeframe contradicted each other regarding aspirin's success as a preventative. Bottom line, if you are not on anticoagulants, it is probably best to take aspirin as a preventative. Some people may never had a clotting episode again while for others it may or may not prevent future clotting. Several of us on this website had re-clotting after starting aspirin therapy.

As far as supplements/vitamins, the following guide was put together by Clot Connect, part of the University of North Carolina's Blood Clot Outreach Program:

http://files.www.clotconnect.org/patients/resources/brochures/Natural_supplements-Brochure_May_2013.pdf

R/Tom

@ Tom- Really good info on that link. Thanks for that. There's lots of supplement info that I was not aware of until reading that.
I too clotted on asprin therapy, though it took 21 years after PE for it to happen.

Very good information Tom. I had to reread a few times to retain it all but it's nice to know there are possible options for after anticoagulant treatment.
Thanks again. I love informative links.

Read the bottom of that brochure Tom attached to see Dr Moll's opinion.

Common sense tells me this: People take many of these supplements daily and STILL clot. I'm not saying don't take them; I take some of these things daily. Just don't kid yourself thinking you'd be protected from DVTs by taking these supplements. If you do take them, still make sure you're doing other preventive measures, like being active, staying hydrated, discussing your clotting history before surgery with your surgeon etc.

I get that we want as many safety nets as we can manage once off warfarin, but in my opinion, if your body likes to clot, it's going to clot, whether you take aspirin or one of the other supplements mentioned.

Thanks everyone for your responses! This was my second opinion doctor, having heard basically the same thing from the first, except he was the one who said to go off Xarelto and take aspirin. In both cases there just seemed to be a "Too bad, so sad" attitude. Almost as if it wasn't worth their time even with a $50.00 co-pay. I say this somewhat jokingly, but both were really dismissive of the condition. Both said they didn't want to see me again until it happened again. I don't want it to happen again, that was the reason to see them. I am genetically negative but "sticky blood" or high hemoglobin seems to run in my family. This doctor feels that the inflammation in my knee an hip probably caused the clot.

I am open to measures we can take through diet, exercise, and supplements to improve the odds, I know there is no cure.

Since My first DVT/PE in 1992 and 2nd one in 1995, I've been reading many postings on the various websites that started standing up around the 1998 time frame about patients trying vitamin therapy or supplements as a preventative. My personal take, from reading over studies, hearing patient feedfback, and my own experience is, though some of those vitamins/ supplements "may" have hold some sort of preventative value, as rmb mentions, if you are prone to clotting, none of those vitamins or supplements are going to help. However, if you are not a candidate for long term anticoagulation therapy and those medications are discontinued by your doctor, it wouldn't hurt to give it a try (as compared to not taking anything at all). From my own research, the two that may provide the most prevention (even if very little) are aspirin, and in the case of Women, Vitamin E. The Vitamin E study was done by my thrombophilia doctors at up Brigham and Women's Hospital and he to this day sticks to the research done by the study.

As rmb has pointed out on the brochure I provided the link for, Dr. Moll's does provide his opinion on the topic. Even though he is not my personal doctor Dr. Moll to me is one of the few doctors whose opinion I respect the most. He has done more for our patient community as a whole than any other doctor I know of in regards to reaching out to the clotting community. He started as the first doctor to have a Q&A pages on the web through the original fvleiden.org website, he then was instrumental in co-founding what is known as the National Blood Clot Alliance (stoptheclot.org) and continues to reach out today through the University of North Carolina's Clot Connect Program (clotconnect.org).

R/
Tom

I think too with supplements is just make sure you're not taking things that interact with other supplements or with other meds or would be dangerous to take if you have certain conditions. I think some people think because they're supplements, they're rather benign, but that's not true. WebMD gives good overviews on certain supplements, potential side effects, etc.

My interest in the article was to find out about interactions. I had been thinking about taking Fish Oil, which I quit taking a couple of years ago. Now I see that it would not be a good idea while on Xarelto.

I've also wondered if I could take L-theanine, which I used to take to help me relax when needed. It is made from green tea, and it doesn't look like that would be a good idea either as it is concentrated.

Dear all

I can see that there have been lots of replies to this thread. If this thread is still alive then I have few remarks here.
1) I did a literature search and found no examples of osteoporosis causing DVT. Perhaps it is the case, but I cannot see how bone thinning can itself cause DVT. The mechanisms for causing bone thinning and DVT are so different.
2) Long-term use of warfarin can cause bone thinning because it interferes with the K-vitamin cycle, but K-vitamin is important in formation of Gla portein which in turn is importnat in calcium metabolism. see e.g. http://www.betterbones.com/bonenutrition/vitamin-k/benefits.aspx If you have osteoporosis, in addition to excercise, calcium supplements could be useful, but you can discuss this with the doctor. The best way to build up bones is exercise, like your doctor suggested.
3) I disagree that the new anticoagulants are made just to make money. They were first approved by FDA for atrial fibrillation, but later for DVT/PE (i..e VTE) diseases. The advantage of these new oral anticoagulants is that they affect only small part of the clotting cycle, whereas warfarin affects the whole K-vitamin cycle, which is important in clotting, but also in bone generation and appear to decrease the risk of artherosclerosis (hardening of arteries). The new anticoagulants (e.g. xarelto) do not affect vitamin K cycle and thus long-term use should not cause osteoporosis.
4) There is NO evidence that ANY of alternative medicine are efficient in preventing clotting. Perhaps the people in the health shop will tell you tthat they will solve all your problems, but they are simply wrong.
5) Aspirin is about 20-30% effective compared to conventional anticoagulants, e.g. warfarin, heparin etc. There is a big debate about the usefulness of aspirin. The pros is that is has hardly any side effects and they have a good track record of preventing heart related diseases. For DVT prevention, it seems to have limited effectiveness.
6) From your message, the most important information that should be looked into is your high hemoglobin counts. In the blood, the density of red blood cells, heamtocrit and hemoglobin are all related. Increase in the amount of hematocrit and hemoglobin is a risk factor for a DVT or PE. Is it possible that this may have caused you DVT? Do they know the cause of your high hemoglobin counts? To my mind, this is crucial to find out, i.e whether you have some underlying disease that causes your high hemoglobin values (and then presumably hematocrit and number of red blood cells). In my view, this is important to look into. Interestingly, patients with osterporosis tend ot have lower hemoglobin levels, but low hemoglobin levels increase the risk of bleeding. Your case is different, i.e you have high levels of hemoglobin and osteoporosis.

Hope this was of use. Have a nice weekend.

The Vitamin E study information can be found at:

http://m.circ.ahajournals.org/content/116/13/1497.full

This was part of a Harvard Medical School study.