Yes. We see a lot of that here.

It's hard, I know. As my hematologist said, some people just like to clot, and while there may not be an identifier for that now, at some point there could be, as they're discovering new things about blood clotting all the time.

An unknown reason for clotting doesn't automatically mean you need to stay on warfarin long term. Many docs recommend 6 months even with no known cause. Some don't and recommend life long anticoagulation. It's kind of a matter of what your doc recommends and what you're comfortable with.

I'm a lifer and I live really well and haven't had any side effects so it's possible to enjoy life while on them. I think the harder part is accepting that there is no apparent explanation. That is frustrating. But you'll work through it. I mean, what's the alternative, right?

Hi,
I seem to remember that something like 1/3 of VTE cases are unprovoked/not identified and I'm in that group. Currently undergoing more prodding and scanning, but getting a bit sick of it and wouldn't mind just being told thats the end of the investigations. It doesn't mean you'l be on anticoag for the rest of your life.

As rmb says, it is frustrating but you may have to just accept that.

I've clotted three times, been tested for all the genetic factors multiple times, and still have no idea why I clot. They told me in the hospital that I might just have something that science hasn't identified yet. Like RMB said, they're discovering new things about clotting all the time. It wasn't that long ago that identified clotting factors (Factor V, Proteins C and S, etc.) weren't known either.

It's somewhat unusual to stay on anticoagulants after only one clotting incident, even with no known cause. Could have just been some bizarre combo of events that will never happen again. Most of the time, they don't recommend becoming a lifer unless you've clotted twice. But, obviously, check with a hematologist to discuss it all thoroughly. In the end, you really need to do what you are comfortable with.

Rosiethecat is right that there are a lot of people who never find out exactly why they clotted. I read a study that might have put the number higher than one-third, but that's probably about right. We like to assume that we'll always find out the cause for these things, but it doesn't always happen. Hopefully, you're able to make peace with that, although it can take a while.

I had 2 PE's, one in each lung and a DVT in my left calf. The doc's
never figured out what the cause was. I was 72 with a family history
of bad hearts.

Plus my blood work all pointed to thick blood, High Homocystine,
High LPa High CRP so with all those things, my doc felt I would be
safer on coumadine for life.

So far I've been dealing with the comadine fine, after the first few
months I've pretty well stabilized my INR.

Good luck maybe they'll let you off it in 6 months or so.

Hi All,

Just wanted to jump in with my 2 cents worth.

I am writing this from a hospital bed with my second bout of PEs this very moment.

This happened Sunday night and we have no idea how long I will be here.

My first episode was the beginning of Sept 2010.They ran extensive tests and like you, found no reason for the attack.

They kept me on Warfarin until this last March 2013 at which point, my Kaiser Dr took me off of it. I told him I was scared of being taken off of thinners due to the fact they didn't know what caused it to begin with.

He said that after 2 years without an episode, he thought I no longer needed it. In my head I was thinking I didn't have any events for that time period due to the fact I WAS taking the thinner....duh!

But I conceded because he was the doctor. I should have insisted on staying on Warfarin...he gambled with my life and it happened again this weekend!

So here I am, in the hospital again. They are struggling to get my INR up. It's been 0.8 for the last 2 days and the new docs are getting more aggressive trying to get it up to therapeutic again.

At this point, I am talking to some malpractice attorneys about suing Kaiser and the doctor that took me off. He gambled with my life and here I am again and almost lost...my life!

Thank god I got to the hospital when I did. The ER docs said had I waited another 4-6 hours, I probably would not have survived.

It is very frustrating as the new hospital and doctors are still trying to figure out why...and still don't know.

Looks like I'm a lifer now.

Just wanted to say hi and that I certainly understand your frustration.

Now, I need to go back and find my original posts from 2010 and see what I wrote back then.

Sorry for the rambling, the Morphine and Norcos are kicking in.

See you guys tomorrow!

I had a PE with no DVT as well (and the techs looked and looked). She said it might be an obesity issue, just a clot forming spontaneously.

Doctors may say they've 'looked for all reasons' to find a reason for a patient's blood clot. But I doubt that they do look for ALL reasons.

They will look for the most likely reasons because that's why most people get clots. Just like the Zebra and Horses fable that so many of us have been told------ and because the bean counters have set limits on how many tests should be done.

But for the unfortunate few that have still gotten a clot I'm willing to bet that ALL the reasons haven't been looked for. Or a really complete medical history.

A good example, in a way, is when an ultrasound is performed on a persons legs (the 'most likely' place) but other areas of the body isn't. Upper extremity DVTs are NOT rare but they are rarely looked for.

What causes hypercoagulable states?

Hypercoagulable states are usually genetic (inherited) or acquired conditions. The genetic form of this disorder means a person is born with the tendency to form blood clots. Acquired conditions are usually a result of surgery, trauma, medications or a medical condition that increases the risk of hypercoagulable states.

Inherited hypercoagulable conditions include:

Factor V Leiden (the most common)
Prothrombin gene mutation
Deficiencies of natural proteins that prevent clotting (such as antithrombin, protein C and protein S)
Elevated levels of homocysteine
Elevated levels of fibrinogen or dysfunctional fibrinogen (dysfibrinogenemia)
Elevated levels of factor VIII (still being investigated as an inherited condition) and other factors including factor IX and XI
Abnormal fibrinolytic system, including hypoplasminogenemia, dysplasminogenemia and elevation in levels of plasminogen activator inhibitor (PAI-1 )

Acquired hypercoagulable conditions include:

Cancer
Some medications used to treat cancer, such as tamoxifen, bevacizumab, thalidomide and lenalidomide
Recent trauma or surgery
Central venous catheter placement
Obesity
Pregnancy
Supplemental estrogen use, including oral contraceptive pills (birth control pills)
Hormone replacement therapy
Prolonged bed rest or immobility
Heart attack, congestive heart failure, stroke and other illnesses that lead to decreased activity
Heparin-induced thrombocytopenia (decreased platelets in the blood due to heparin or low molecular weight heparin preparations)
Lengthy airplane travel, also known as "economy class syndrome"
Antiphospholipid antibody syndrome
Previous history of deep vein thrombosis or pulmonary embolism
Myeloproliferative disorders such as polycythemia vera or essential thrombocytosis
Paroxysmal nocturnal hemoglobinuria
Inflammatory bowel syndrome
HIV/AIDS
Nephrotic syndrome (too much protein in the urine)

How is a hypercoagulable state diagnosed?

Careful Medical History
Certain conditions increase a persons risk for developing blood clots, but do not necessarily indicate a genetic hypercoagulable state. Therefore, a careful evaluation of the patients personal and family medical history is needed.

Patients may be candidates for screening for hypercoagulable states if they have:

A family history of abnormal blood clotting
Abnormal blood clotting at a young age (less than age 50)
Thrombosis in unusual locations or sites, such as veins in the arms, liver (portal), intestines (mesenteric), kidney (renal) or brain (cerebral)
Blood clots that occur without a clear cause (idiopathic)
Blood clots that recur
A history of frequent miscarriages
Stroke at a young age

Obviously that's a long list and most of the items wouldn't apply to most of us. But some of us?

@ whyask,

If you're seriously considering suing Kaiser (which is a valiant but almost impossible task) may I suggest that you not say anything more on a PUBLIC site about it.

Kaiser does NOT have someone trolling these sites, but if it ever came to a lawsuit------ every word you've written on the Internet can be found and used.

You might find the reading at http://kaiserpapers.org/legalstuff/ interesting.

Many of us have been mis-diagnosed, not diagnosed and other medical travesties that almost cost our lives. I'm one of them. But doctors don't have malpractice insurance for nothing. :)

cave 76 that is very comprehensive list....Nothing strikes me on the list unfortunately....but worth looking into further....I think I will copy and paste so I can print. Who knows...right now it is for sure the docs dont..
Thanks for the info..

@diamorrow

Please don't show that list to your doctor! LOL That was only meant to show that 'all' doesn't mean 'all'. Nor was it meant to scare you!

But it would benefit you to get the lab results of all the 'multiple' blood tests he performed. If they don't include the ones in the first list (Inherited hypercoagulable conditions) then I'd suggest asking him why----- there may be a reason but then again sometimes there isn't one.

Thanks cave that is actually what I planned to do...dont want to make the doc mad and I knwo they think they know it all so I need to be subtle...sort of for me...

The cause of my DVT is also unknown. I am now going to a Hematologist. I don't want to be on Coumadin the rest of my life either. But the more I read on here it scares me not to be on it. Like my doctor said we can only test for what we know it is hard to test for what we don't know.

I can relate to your frustration!

my story is identical to whyask.

I had my first PE in May 2012. After 9 months on warfarin, my doc took me off warfarin and on an 81mg aspirin daily. Blood tests showed no clotting disorders at all. My doc blaimed my PE on a 2 1/2 hour flight & thought it was an isolated incident.

So, two weeks after a 12 hour drive (stopping every 2 hrs to stretch), I started getting cramps and a cough. Tests revealed another PE now I'm a lifer.This happened in Sept 2013.

I still feel my pulmonologist took a big risk with my life by taking me off warfarin. I lived in fear while off meds. I had a feeling it was going to happen again and it did.

I feel very lucky to have survived two PEs.

I suspect most people feel like they're going to clot again after coming off warfarin. Percentage wise, most do not clot again. Taking people off of warfarin after a certain amount of time for a first time clot where there's no genetic disposition for clotting is not a rogue call. It's a very common protocol. I know if feels personal and that it was the wrong call, but in hindsight, that's always how something feels. It feels like someone was playing Russian roulette with your life, but if you do some research, you will find that the recommendation to go off warfarin is not only not outrageous but generally typical.

I am a two time clotter so I understand the concern and the fear and the confusion after clotting again, but taking the emotion out of the equation, you come to understand that much of medicine is about percentages,protocols, studies and statistics. If it weren't, how would doctors know how to treat anyone, for anything?

Had another visit with the hematologist and still no answers to my PE's. He wants me to stay on the Xarelto for life....I am not sure I want to...I have no genetic disorder, no clotting factors or anything to indicate that this wasn't an isolated incident...I still think my summer from hell and lack of self care could be the cause...I really think I was dehydrated as well...just my guess as they have no real answer...I will stick with the meds for at least 6 months then re-evaluate.
Are there any specialist in clots besides a hematologist???