Oh, no DVTs found second time, either

If you are luke warm, change specialists.

Not all clot causing conditions are known. What's your family history? You may be a clotter from a condition that has not yet been discovered.

I am in your situation. One cause of clotting is cancer. I have gone through many cancer screenings: thyroid, prostate, colon, etc.

I relied on my primary care doctor to get the bottom of this. She put the information from all the specialists together.

Good Luck

I've had two DVTs in the past and then recent PEs in January. They never checked for DVTs in January because (as I was told multiple times) it wouldn't change the treatment anyway.

I've had two complete sets of blood/genetic tests with the hematologist plus a thyroid test (some thyroid problems can increase the risk of clotting) and a chest/abdomen/pelvis scan double-checking the clots and also looking for any possible cancers.

So far, zilch.

They told me in the hospital that I may just have something that they can't test for yet. This makes sense, but it is frustrating. I'm like you in that I would like to have a CAUSE for all the mayhem. But, if I have to wait another ten years for them to discover another genetic test or whatever, I guess I'll just have to do that.

Good luck with your hunt!

Well they've pretty much put you through the standards.
My hematologist also ordered a FANA to check for autoimmune issues that could have been the catalyst (I am also FVL homozygous, but something still had to set it off) as well as thyroid tests.
It couldn't be more clear that something is going on with you and YOU SHOULD KNOW what that something is - it's more than a matter of curiosity- look at it as a gift to your family medical history to get these things answered. Future cjmenjou's will appreciate your efforts.

We have at least one participant amongst us whose unexplained PEs were eventually tracked down to fibrillation. Atrial and/or ventricular arrythmias can lead to PE, though more often you hear of a link between AF and stroke. PE seems to get the short shrift in such matters.
http://emedicine.medscape.com/article/158712-overview

From your previous posts I recognize you as another one amongst us who once had total control of all health matters. I miss it just as you do. Knowing the "why" part was indeed a blessing. Keep turning the rocks and I hope you get there. What was lost, can be regained to some extent or another.

Yeah, had the pelvis abdomen CT. No history of family DVTs (mom had a superficial last year). I would think if AF I would experience arrythmia (sp?). Other than the occasional odd skipped beat (like once every 6 months), nothing. And pat of my original workup was with a cardiologist, had more ekgs than I can shake a stick at, always normal.

Got a reference to a USC hematologist, Howard Liebman, trying to see if anyone knows him, although he does specialize in thrombophilia.

Yes, more2be, somehow feel as if learning the why might get me back on the road to the fitness I had, in some form or another. It's just so strange to me that I can go from completely healthy to clotting, with no "traditional" causes, and then clot almost immediately when off anticoagulants. I originally thought my first clots came from a long race, drinking, and then a longish drive the next day. But these latest clots don't make sense under that theory, unless something was just triggered in me.....

Feels so out of control.

Chris, ping Ferr a message she had clots for no reason and it took a while for them to find the cause, which was indeed arrhythmia I think but she works in a hospital and knows all the doc's and it still took them a long time to find the cause.

Chris - just saw this and wanted to let you know my wife and I were thinking of you...prayers will be sent but I am confident you will bounce back. It's not everyday that you can keep a 12HR IRONMAN finisher down..hang in there.

Brian

I think finding the reason is important but but tuck away in the back of your mind the possibility of never knowing the specific reason and then how you're going to adjust to that. Because the quest can ultimately consume you.

They have never been able to give me a definitive reason for my clots. They think they may be related to ulcerative colitis, but it could be a multitude of things happening in my body for which they can't identify.

There's gotta be a balance between researching and acceptance. That's a hard one. I spent a lot of time fretting over why I was clotting, agnoizing over it, wondering how I would move forward without that knowledge, how freakin' scarey it was that this was happening in my body. In hindsight, that time could have been better spent living and doing.

I'm not trying to tell you what to think or what to do. I'm just saying there can be a point where there are no concrete answers, that it can be a perfect storm of events that specifically happen in your body for which there is no test, no diagnosis, etc.

Good luck!

Yeah, I know, I am just hoping in the back of my mind there's some imbalance, or issue, and the docs say "hey, I've got a cure for that!" Or maybe they can name some new syndrome after me. I'll be Patient X.

There is a control element too. Used to be, I could make my self faster by training more, or thinner by eating less, or less tired by sleeping more. Now, there's this part of me that I can't control, for the first time in my life. And I don't like it

Just making sure no stone is unturned. The reality is that no matter what they find, pretty sure they don't have a cure for it, so whether they find anything or not, the reality is I'm on the thinners indefinitely.

I guess the good news, for what it's worth is that I know the thinners work, and I am not clotting while anti-coagulated. The Nov. 09 CT scan proved that to me.

Now it is on to figuring out how to live my life based on reality. I guess everyone's got limitations. I just have some new ones

Chris

Yeah, you're right. If they do find something, it probably won't change much; you'd be on anticoagulants anyway. That's how I started thinking about it after a while, just to get out of my own head.

I understand the control thing. I think what I have come to terms with myself is that we have a great deal of control, over how we treat our bodies, how we treat other people but the thing I never understood fully until the PE was that I also have control over how I respond to life's situations, adversity, pressure, stress, sadness, anger, etc. In a way, it has given me insight into how I view things and react to things. So, when it comes to that, I have COMPLETE control. I guess I take it where I can get it!

I think you are a perfect example of the process you go through when you have a PE and when you learn that you have to be on wawrfarin for life. We just keep adjusting our thinking until we find a way to make some kind of sense out of it, even if it's not perfect sense.

I do not regret having a PE, DVT,any of it because I've learned more in the last 2.5 years than I've learned in the last 40 years. I think at the end of the day, the changes I experienced have been positive. There were times where I didn't feel that way, that it made me more edgey and inpatient, but the edges smoothed over with time. I've learned about what I can really handle and I've learned about what I need to work on and I've learned that there is not much to fear that I haven't already experienced. While the PE doesn't define me as a person, it shapes my thinking when it comes to certain aspects of my life. I really do think I'm better for the experience.

It's a long strange trip for sure.