DVT, PE and blood thinners.

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Sparx
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DVT, PE and blood thinners.

Postby Sparx » Tue Mar 07, 2017 9:29 am

Hi All,

Anyone here had any experience with DVTs, PE and riding on blood thinners long term? I've just had my second DVT/PE and looks likely that I may be on some kind of anti coagulant possibly for life.

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foo on patrol
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Re: DVT, PE and blood thinners.

Postby foo on patrol » Wed Mar 22, 2017 12:10 pm

Still no answers. :(

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Re: DVT, PE and blood thinners.

Postby ValleyForge » Tue Mar 28, 2017 9:56 pm

Well, lots of people lead fairly normal lives on anticoagulants.

Treatment of recurrent DVTs is a niche area and I guess it is presumed there is no underlying cause (no family cause/genetics) or recent trigger like surgery or travel.

Warfarin/Coumadin is the traditional treatment and requires regular blood tests. Road cycling is usually considered fine if your INR (measure of blood thinness) is not >4.0. Most would say MTB is probably a bit on the riskier side.

There is a trend to the novel agents (clopidigrel et al) for DVT prevention but as I understand it, it isn't firmly proven. They sure as hell are more convenient though. Most would say ANY sort of cycling with the novel agents is acceptable.
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queequeg
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Re: DVT, PE and blood thinners.

Postby queequeg » Tue May 02, 2017 9:35 am

I'll be able to add to this soon, as I have just had a DVT and will be on tablets for at least the short term.
I'm off the bike for a while as things settle and i have various followups. My case is a bit unique in that it appears i have had previous DVT with no symptoms or effects, possibly going back years. My body has developed multiple return pathways that has allowed some flow to continue, and might be why I have never had any symptoms before.

I've had the pipes cleaned out with some dissolving agents, which was an experience in itself. I'm now recovering post-procedure and will going over to apixaban tablets tomorrow.

I am with the best DVT Guy in the country, so hopefully we'll find some answer on my situation and I'll be able to return to riding and ultimately get off the thinners, but I am a long way from that right now. For the time being I am thankful that the clot did not become a PE either now or in the past.
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Re: DVT, PE and blood thinners.

Postby foo on patrol » Tue May 02, 2017 10:00 am

:(

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Re: DVT, PE and blood thinners.

Postby queequeg » Tue May 02, 2017 1:24 pm

foo on patrol wrote::(

Foo


Yep, it's pretty much destroyed my whole year. I was at peak fitness three weeks ago, and still making big gains leading up to a 2 month Europe Tour later in the year. That is now off as well, with the double let down of also not being on the bike at all.
As you'd imagine, a lot of emotion with it all, so it won't be any easy time for me, but hopefully i will get some answers and be able to come back stronger.

What i have been through in the last week is some pretty heavy stuff that i can't wrap my head around. Still can't believe I am walking out of here with nothing more than a sore leg from the swelling and the procedure.
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Re: DVT, PE and blood thinners.

Postby queequeg » Sat May 06, 2017 5:28 pm

So, just a quick quick update.

I am back home, and I am on apixaban tablets for the immediate future. I have a followup scan (ultrasound) in 6 weeks, and at some stage in the next 12 months I will have the IVC Filter removed.

For the time being I am off the bike, mostly as a precautionary measure whilst looking at possible causes. The clot(s) are at least gone and I'm recovering well, just a bit stiff in the leg that was swollen, but that is getting better as I move about.
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g-boaf
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Re: DVT, PE and blood thinners.

Postby g-boaf » Sat May 06, 2017 8:13 pm

queequeg wrote:
foo on patrol wrote::(

Foo


Yep, it's pretty much destroyed my whole year. I was at peak fitness three weeks ago, and still making big gains leading up to a 2 month Europe Tour later in the year. That is now off as well, with the double let down of also not being on the bike at all.
As you'd imagine, a lot of emotion with it all, so it won't be any easy time for me, but hopefully i will get some answers and be able to come back stronger.

What i have been through in the last week is some pretty heavy stuff that i can't wrap my head around. Still can't believe I am walking out of here with nothing more than a sore leg from the swelling and the procedure.


Sorry to hear about that - you've however come away from this incredibly fortunate. I know you were really, really motivated for Europe as well. :(

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Re: DVT, PE and blood thinners.

Postby queequeg » Sun May 14, 2017 9:28 pm

g-boaf wrote:
queequeg wrote:
foo on patrol wrote::(

Foo


Yep, it's pretty much destroyed my whole year. I was at peak fitness three weeks ago, and still making big gains leading up to a 2 month Europe Tour later in the year. That is now off as well, with the double let down of also not being on the bike at all.
As you'd imagine, a lot of emotion with it all, so it won't be any easy time for me, but hopefully i will get some answers and be able to come back stronger.

What i have been through in the last week is some pretty heavy stuff that i can't wrap my head around. Still can't believe I am walking out of here with nothing more than a sore leg from the swelling and the procedure.


Sorry to hear about that - you've however come away from this incredibly fortunate. I know you were really, really motivated for Europe as well. :(


Yeah, it's a major setback for me as I was at peak fitness and still improving, so I was going to get over there and have a ball. I have now been off the bike for exactly a month, which is the longest stretch I have had off in my entire cycling lifetime (~9 years). There's not really much I can do about it now except rest and wait until I get given the all clear. Hopefully I'll get another crack at it in 2019.
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Re: DVT, PE and blood thinners.

Postby queequeg » Sat Jun 24, 2017 5:33 pm

So, had my first followup after the DVT episode. Scans show improvement, still have residual clotting. Off the bike for another 3 months until my next scan in October.
Looks like I'll be on the anti-coagulants for life, and at this stage no closer to knowing why I had the DVT in the first place.
In terms of recovery, my leg was pretty sore for around 4 to 5 weeks, mostly as a result of the swelling from the initial episode, plus the bruising from the procedure. However, it's all good now and in terms of physical recovery I am at a stage where I can't tell I'd even had a clot. So, pretty much where I was before it happened.

Looks like it's a long road ahead. Hopefully there is cycling in it somewhere in the future.
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Re: DVT, PE and blood thinners.

Postby biker jk » Sat Jun 24, 2017 6:32 pm

queequeg wrote:So, had my first followup after the DVT episode. Scans show improvement, still have residual clotting. Off the bike for another 3 months until my next scan in October.
Looks like I'll be on the anti-coagulants for life, and at this stage no closer to knowing why I had the DVT in the first place.
In terms of recovery, my leg was pretty sore for around 4 to 5 weeks, mostly as a result of the swelling from the initial episode, plus the bruising from the procedure. However, it's all good now and in terms of physical recovery I am at a stage where I can't tell I'd even had a clot. So, pretty much where I was before it happened.

Looks like it's a long road ahead. Hopefully there is cycling in it somewhere in the future.


I wasn't aware of your condition until today. Very sorry to hear the news. Having spent six weeks off the bike in 2015 I know how difficult it must be for you. Best wishes in sorting out this mystery.

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Re: DVT, PE and blood thinners.

Postby Baalzamon » Sat Jun 24, 2017 7:32 pm

You could be genetically disposed to getting them. Have you had your Hs-CRP levels checked?
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Re: DVT, PE and blood thinners.

Postby queequeg » Sat Jun 24, 2017 10:18 pm

Baalzamon wrote:You could be genetically disposed to getting them. Have you had your Hs-CRP levels checked?


No testing done as yet, at least that I am aware of. I guess the main thing was to get me stable again first. My DVT isn't straightforward due it's location & size, so there's a few possibilities to explore in terms of diagnosis. I'd imagine getting a check for Leiden V is one of them.
Given I have a few "extra veins" as collaterals, including a rather large lumbar vein, it suggests I was just born this way or developed the clotting many years ago is a slow manner. Apparently my Illiac vein is 5cm in diameter, whereas a typical diameter is 6.5mm. It's possible that is actually because it's being compressed into a ribbon like shape rather than being round. I can't quite fathom a vein that big without being able to feel it. Anyway, there's a few things to explore. At this stage I am being treated with just the Apixaban and followups every 6 to 8 weeks. No stent placement at this stage, just the temporary IVC Filter to prevent any PE's.
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Re: DVT, PE and blood thinners.

Postby queequeg » Sat Jun 24, 2017 10:21 pm

biker jk wrote:
queequeg wrote:So, had my first followup after the DVT episode. Scans show improvement, still have residual clotting. Off the bike for another 3 months until my next scan in October.
Looks like I'll be on the anti-coagulants for life, and at this stage no closer to knowing why I had the DVT in the first place.
In terms of recovery, my leg was pretty sore for around 4 to 5 weeks, mostly as a result of the swelling from the initial episode, plus the bruising from the procedure. However, it's all good now and in terms of physical recovery I am at a stage where I can't tell I'd even had a clot. So, pretty much where I was before it happened.

Looks like it's a long road ahead. Hopefully there is cycling in it somewhere in the future.


I wasn't aware of your condition until today. Very sorry to hear the news. Having spent six weeks off the bike in 2015 I know how difficult it must be for you. Best wishes in sorting out this mystery.


Yeah, it's not much fun being sidelined without having a diagnosis. I never seem to get the easy path, but hopefully we'll get to a point where we have answers. I've been doing lots of reading on DVT and have come across some interesting medical journal articles with almost identical presentations of symptoms as mine, but out of all DVT's, it represents only a few percent of cases. So, not really surprised that all I got at the hospital was "never seen this before".
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Re: DVT, PE and blood thinners.

Postby g-boaf » Sun Jun 25, 2017 2:10 pm

queequeg wrote:
biker jk wrote:
queequeg wrote:So, had my first followup after the DVT episode. Scans show improvement, still have residual clotting. Off the bike for another 3 months until my next scan in October.
Looks like I'll be on the anti-coagulants for life, and at this stage no closer to knowing why I had the DVT in the first place.
In terms of recovery, my leg was pretty sore for around 4 to 5 weeks, mostly as a result of the swelling from the initial episode, plus the bruising from the procedure. However, it's all good now and in terms of physical recovery I am at a stage where I can't tell I'd even had a clot. So, pretty much where I was before it happened.

Looks like it's a long road ahead. Hopefully there is cycling in it somewhere in the future.


I wasn't aware of your condition until today. Very sorry to hear the news. Having spent six weeks off the bike in 2015 I know how difficult it must be for you. Best wishes in sorting out this mystery.


Yeah, it's not much fun being sidelined without having a diagnosis. I never seem to get the easy path, but hopefully we'll get to a point where we have answers. I've been doing lots of reading on DVT and have come across some interesting medical journal articles with almost identical presentations of symptoms as mine, but out of all DVT's, it represents only a few percent of cases. So, not really surprised that all I got at the hospital was "never seen this before".


Take care - hang in there. It's frustrating to be sidelined, especially with something like this. Best of luck.

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Re: DVT, PE and blood thinners.

Postby CKinnard » Sun Jun 25, 2017 3:38 pm

queeqeg, some food for thought:

- what's your diet like, now and previously? in terms of serves of salad and vege per day, leafy greens, dairy, animal flesh.
- alcohol now and history
- smoking now and history
- hydration when cycling and at other times.
- diseases of the intestine
- sleep quality
- shift work
- type of work i.e. deskwork, driving lots, or up and down.
- do you have large calfs?
- are your calfs tight and achy at times.
- are you a sprinter rather than a climber?
- current and highest BMI
- waist/height ratio
- your actual height
- have you suffered calf or achilles strains before?
- have you ever broken the tibia or fibula in the effected leg?

all these things are relevant to predisposition to DVTs

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Re: DVT, PE and blood thinners.

Postby queequeg » Sun Jun 25, 2017 9:46 pm

CKinnard wrote:queeqeg, some food for thought:

- what's your diet like, now and previously? in terms of serves of salad and vege per day, leafy greens, dairy, animal flesh.
- alcohol now and history
- smoking now and history
- hydration when cycling and at other times.
- diseases of the intestine
- sleep quality
- shift work
- type of work i.e. deskwork, driving lots, or up and down.
- do you have large calfs?
- are your calfs tight and achy at times.
- are you a sprinter rather than a climber?
- current and highest BMI
- waist/height ratio
- your actual height
- have you suffered calf or achilles strains before?
- have you ever broken the tibia or fibula in the effected leg?

all these things are relevant to predisposition to DVTs


For the most part, none of these come into play. I'm not going to go into them one a time, but my DVT was bizarre enough that the first hospital had no idea what to do with me, and when they finally got a hold of the top DVT specialist in the country, he said "oh, (AT)#$*!" when he saw my scan. My clot is in the Iliac Vein/Femoral Vein, as well as an extra Lumbar Vein running behind the Iliac Vein. I was told by him that riding 18,000km in a year was insane. He thinks cycling caused the DVT. When they did the CDT, it was noted that it appears I had years of clotting without symptoms, and the weird extra veins is quite possibly something I was just born with. So, no real answers there.
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Re: DVT, PE and blood thinners.

Postby CKinnard » Mon Jun 26, 2017 12:00 pm

ok, yes these veins can be compromised in road cyclists, and have prematurely ended careers of pros.
This is especially so with slammed stems and increased hip flexion.

Endofibrosis of the external iliac artery is better studied but the same tortuous results apply to veins.
http://www.scielo.br/scielo.php?script= ... 3000200139

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Re: DVT, PE and blood thinners.

Postby Baalzamon » Mon Jun 26, 2017 3:18 pm

Have you been scratched by lemon trees or something else? Yes lemon trees can cause DVT.
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Re: DVT, PE and blood thinners.

Postby queequeg » Wed Jun 28, 2017 6:53 pm

CKinnard wrote:ok, yes these veins can be compromised in road cyclists, and have prematurely ended careers of pros.
This is especially so with slammed stems and increased hip flexion.

Endofibrosis of the external iliac artery is better studied but the same tortuous results apply to veins.
http://www.scielo.br/scielo.php?script= ... 3000200139


Yep, I have done plenty of reading on this. If you simply put "DVT cycling" into Google it returns most of these. In my case the clot originated at the Internal Iliac Vein and extended downwards into the leg down as far as the ankle.
Many of the articles about the issues with Arteries say that the issue doesn't happen with Veins as they are more pliable. In fact, many of the surgical options for issues with the arteries is to patch it with veins!

On the balance of things, you would have to say that if damage to the veins is something that is caused by cycling, you would expect around the same number of cases popping up from the pro riders, who ride far longer and harder, and constantly in the drops for tens of thousands more km to me. The fact there is almost no literature tells me it's pretty rare. In the links above there were only two cited cases involving the Iliac Veins.

I'm also looking into May-Thurner Syndrome as a possibility. That should at least be able to confirmed or ruled out off some scans.
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Re: DVT, PE and blood thinners.

Postby queequeg » Wed Jun 28, 2017 6:55 pm

Baalzamon wrote:Have you been scratched by lemon trees or something else? Yes lemon trees can cause DVT.


Not to my knowledge.
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Re: DVT, PE and blood thinners.

Postby Sparx » Thu Jun 29, 2017 9:30 pm

Ha - well I started this thread back in March and haven't really been on this forum since. And funnily enough I'm also off to Europe to ride the Haute Route - so quite a coincidence.

As I said it was my second DVT with bilateral PE. Saw the specialist last week and I'll be on xarelto long term (they don't like to say 'for life'). I was off the bike for 4 weeks and had pretty slow build up from then but I am now back to full training for the Haute Route of 3-500km weeks so I'm pretty happy with that.
In the first few weeks of exercising I was getting some symptoms which was extremely stressful but that has settled down and last weekend I did a cx race which was 40mins with a heart rate of 178bpm.

So while it's been stressful I've managed to get back fairly quickly and will be off to do the Pyrenees and Alps in a couple of weeks. Now my only issue is staying motivated to train now that winter has really arrived! Luckily most of the hard work is done.

The truth is - they can do all the tests they want but for my case the fact that I've had 2 is proof enough that I have a predisposition.

Anyway - I just wanted to say - I'm sure you'll get back to riding full time. It's a scary and frustrating thing but it's treatable and there are worse heath issues. Don't hold your breath for answers either, I still haven't had an explanation for mine - unprovoked they call it.

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Re: DVT, PE and blood thinners.

Postby queequeg » Fri Jun 30, 2017 12:36 am

Sparx wrote:Ha - well I started this thread back in March and haven't really been on this forum since. And funnily enough I'm also off to Europe to ride the Haute Route - so quite a coincidence.

As I said it was my second DVT with bilateral PE. Saw the specialist last week and I'll be on xarelto long term (they don't like to say 'for life'). I was off the bike for 4 weeks and had pretty slow build up from then but I am now back to full training for the Haute Route of 3-500km weeks so I'm pretty happy with that.
In the first few weeks of exercising I was getting some symptoms which was extremely stressful but that has settled down and last weekend I did a cx race which was 40mins with a heart rate of 178bpm.

So while it's been stressful I've managed to get back fairly quickly and will be off to do the Pyrenees and Alps in a couple of weeks. Now my only issue is staying motivated to train now that winter has really arrived! Luckily most of the hard work is done.

The truth is - they can do all the tests they want but for my case the fact that I've had 2 is proof enough that I have a predisposition.

Anyway - I just wanted to say - I'm sure you'll get back to riding full time. It's a scary and frustrating thing but it's treatable and there are worse heath issues. Don't hold your breath for answers either, I still haven't had an explanation for mine - unprovoked they call it.


Good Luch with the Haute Route. I am still drowning my sorrows over having to cancel my Haute Route Triple Crown. All I can say is I am glad I got the Unlimited coverage for trip cancellation!
There is not really too many avenues to explore. If I was predisposed to clots with some of the genetic disorders, I would have expected it to show well before now...such as when I was a total sloth, but not after 9 years of being active.
Anyway, I am hoping I'll be able to resume riding later in the year. It will probably be too late for me to commit to having another crack at the event next year, so I am planning for 2019 and will have to find some shorter and closer events to do in the meantime. I just need to get this IVC Filter removed, then convince my Doctor that whether he likes it or not, I am going to resume riding. Same issue as you - Unprovoked DVT.
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Re: DVT, PE and blood thinners.

Postby g-boaf » Fri Jun 30, 2017 8:47 am

Sparx wrote:Ha - well I started this thread back in March and haven't really been on this forum since. And funnily enough I'm also off to Europe to ride the Haute Route - so quite a coincidence.

As I said it was my second DVT with bilateral PE. Saw the specialist last week and I'll be on xarelto long term (they don't like to say 'for life'). I was off the bike for 4 weeks and had pretty slow build up from then but I am now back to full training for the Haute Route of 3-500km weeks so I'm pretty happy with that.
In the first few weeks of exercising I was getting some symptoms which was extremely stressful but that has settled down and last weekend I did a cx race which was 40mins with a heart rate of 178bpm.

So while it's been stressful I've managed to get back fairly quickly and will be off to do the Pyrenees and Alps in a couple of weeks. Now my only issue is staying motivated to train now that winter has really arrived! Luckily most of the hard work is done.

The truth is - they can do all the tests they want but for my case the fact that I've had 2 is proof enough that I have a predisposition.

Anyway - I just wanted to say - I'm sure you'll get back to riding full time. It's a scary and frustrating thing but it's treatable and there are worse heath issues. Don't hold your breath for answers either, I still haven't had an explanation for mine - unprovoked they call it.


Another one for Haute Route - good luck. I'm headed over there too, but I'm not doing Alps or Pyrenees.

I know someone else who has ended up with DVT too, he is back training but indoors only for the moment for obvious reasons.

queequeg wrote:It will probably be too late for me to commit to having another crack at the event next year, so I am planning for 2019 and will have to find some shorter and closer events to do in the meantime.


Tour of Oman also looks pretty nice and is a lot closer than Europe - that one does look tempting. I'm sure your doctor can find a way to get you back on the bike.

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Re: DVT, PE and blood thinners.

Postby CKinnard » Fri Jun 30, 2017 8:56 am

queequeg wrote:
CKinnard wrote:ok, yes these veins can be compromised in road cyclists, and have prematurely ended careers of pros.
This is especially so with slammed stems and increased hip flexion.

Endofibrosis of the external iliac artery is better studied but the same tortuous results apply to veins.
http://www.scielo.br/scielo.php?script= ... 3000200139


Yep, I have done plenty of reading on this. If you simply put "DVT cycling" into Google it returns most of these. In my case the clot originated at the Internal Iliac Vein and extended downwards into the leg down as far as the ankle.
Many of the articles about the issues with Arteries say that the issue doesn't happen with Veins as they are more pliable. In fact, many of the surgical options for issues with the arteries is to patch it with veins!

On the balance of things, you would have to say that if damage to the veins is something that is caused by cycling, you would expect around the same number of cases popping up from the pro riders, who ride far longer and harder, and constantly in the drops for tens of thousands more km to me. The fact there is almost no literature tells me it's pretty rare. In the links above there were only two cited cases involving the Iliac Veins.

I'm also looking into May-Thurner Syndrome as a possibility. That should at least be able to confirmed or ruled out off some scans.


It is typical for incidents in pros or Olympians not to be written up, let alone sent to a journal as a case study. Though if you work in the field with people who have been around for 20+ years, you hear what's common. Endofibrosus usually ends rider's careers by 30yo and more severely effects performance because it reduces blood flow to the extremities. Vein issues are usually not picked up until they get tender.
No doubt there's a genetic and congenital component to whether one will develop varicosities and DVTs, but from my sports med experience it is also effected by diet, sleep, training load, and carrying excessive weight. Significant visceral fat compromises venous return.

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