I’ve never heard of doing a circulatory study but that just may be me not be aware that’s a thing. Do they suspect you have post thrombotic syndrome? Or do they suspect a new DVT that occurred while on xarelto or do they think it’s the clot you had but not resolving?

Usually a specialist isn’t required to manage your anticoagulant meds. I am assuming you were referred because a hematologists may offer insight into what caused the clot, if you have genetic clotting factors, etc. I saw a hematologists a few times initially but then was told my GP would take it from here.

Why are they taking you off xarelto?

With warfarin, yes vitamin k impacts your INR. But the finer take away is keeping your diet consistent while on warfarin. That way they can dial into the right warfarin dosage based on your normal diet. It can take a while to get that spot, just an FYI. So that’s not unusual.

I seriously would ask all these questions of your GP and if he can’t answer, look for another GP or internist to manage your care. I did that after my DVTs because I just felt my GP at the time was not equipped. I found an internist who just seemed more on the ball. If you aren’t sure why they are doing things or not doing things it’s ok to push for answers.

I have GI issues anyway and warfarin made them worse initially but it got better after a month or two.

MB Thankyou for the reply. Doc's never said any thing about PTS. This is the first I have heard of it. Hematologist said something about clots never going away. They can be reduced but then form scare tissue over them. New clots can form on top of old ones and repeat. But he did not follow up 2 years ago. So he cannot be sure but thinks this is the same clot. Maybe he thought two years ago that my clot was already old and scared over and what I had 2 years ago was PTS. So he did not do the follow up. He did say that some people are not protected with Xarelto. And they need Coumadin to reduce a clot. So I guess they want to see if a different med helps. Thing is if it was and or is an old clot what triggered my leg to swell and pain? Why was I fine for 2 years on Xarelto? Why did it get better and do really well again until day before yesterday. I know ask my doctor.

Doing reading about vitamin k I understand about keeping my intake steady for good INR. But with not being able to eat a lot of then being to at times due to gastric problems I don't see how I can be regulated properly with 2-3 lab checks a week. And worse with not being even made aware of how V K impacts INR. I am on the Enoxaparin injections that they say protect me until my INR reaches good levels. Do you know if the INR test is an average over some time period or is just what it is at that specific time?

Thank you again. You have helped me to be able ask I hope the right questions.

PTS is just what happens to some people after a DVT. Usually it occurs a year or so after a DVT for some people where you get swelling, redness, some pain for people or heaviness. There is no test to diagnose it as far as I know. It’s diagnosed based in symptoms, history, timing, etc. I’m not sure if that’s changed though.

I think your INR is what is at that moment but it would likely not vary that much day to day unless you binged a bushel of spinach or something like that. Eventually as they tweak the dosage here and their to get in range you consistently stay in range you don’t need to test as much. I eventually tested monthly but it took a good while for me to get to that place. Everyone is different though. I would say the less you mess with your diet the better. If you start to eat differently to try to get your INR in range it just seems to make things less stable. Eat how you normally eat. If you find your diet is different right now because of your gut issues, that just means at some point once you are back on track they may need to make dosage adjustments to accommodate the diet change. Warfarin really is like that, where sometimes you chug along at a certain dosage for a while and then for whatever reason the dosage is no longer keeping your INR in range. It’s just a touchy drug.

This is all anecdotal by the way. Be sure to ask this stuff of your doctor for a true medical opinion.

Swelling for sure and pain along the vein in my thigh and not so much in my calf 2 weeks ago. And swelling this week in the whole leg same as 2 weeks ago but pain below the knee. But no redness. Don't know. See my GP in 2 weeks for a physical. I'll ask then.

Headed to the store so I'll get my regular stuff (baby spinach salad, garlic, ect.) Maybe move a bit more to an anti inflammatory diet than I was. Half of that is on my high in vitamin k list but now is the time to do that I guess.

Thank you again.

Hi, new here... diagnosed early this week with a DVT in my lower rt leg, below the knee... I am really stressed... yes, for sure about the DVT, but equally about the meds they want to put me on... and just how I should be treated... my Cardiologist, PCP and Endocrinologist all are really pushing Eliquis...

I am sort of an OCD/anxiety/depression sort, so this is a real kick in the teeth... but I read a TON about everything that affects me... OK, I am a little windy... :-)

I recommend you see a cardiologist... what does an oncologist have to do with DVTs? And your PCP, frankly, sounds like a loser... I can relate, I have had a heck of a time finding competent doctors who don't just listen for 5 minutes and whip out a prescription pad... if one med doesn't work, prescribe another...

Here is what I have found so far, just my opinions, I am not a Doc, do your own research:

Eliquis and Xarelto have really nasty side effect and risk profiles... and most have to stay on them for life... Warfarin is a little better, but a real hassle to keep in range, interactions, diet restrictions... and you still can have a PE (pulmonary embolism) on them... and the risk of a hemorrhagic stroke goes up.
Yet an anticoagulant is needed to stop the growth of DVT clots... one thing NONE of them do is to dissolve the clot. I also can't find anywhere where it is said they have any effect preventing a clot from "breaking off" and causing a PE... they keep the clot from growing, while supposedly, your natural Plasmin disintegrates the clot. There are drugs called thrombolytics (commonly known as clot busters), such as streptokinase and alteplase. I am surprised that none of your Docs recommended trying one as your clot has been around for a long time...

Here is where I am at... I am taking Nattokinase and Serrapeptase... and will soon be taking Lumbrokinase too... these enzymes are really interesting, but it is hard to find much info online... THIS is what makes them so interesting... they dissolve blood clots. Additionally, nattokinase has a anticoagulant action too, but does not cause the bleeding risk of the majors mentioned above. Here is a link that explains them... but it is unfortunately, not referenced for further study...
https://healthyeats-nl.blogspot.com/2014/04/a-bit-about-serrapeptase-nattokinase.html

The big question to me, is whether Nattokinase is a strong enough anticoagulant to keep my clot from growing... if so, I would not consider any of the major anticoagulant drugs... but I am not sure, so am stressed about it... I will take the enzymes in some fashion, with or without Warfarin... because they are clot busters, 4X as strong as Plasmin... and actually help your natural Plasmin work (activate), which, as said, none of the majors do at all. All my Docs Poo-poo anything not Big Pharma. I am still not sure what I will do... but I hope this gives you food for thought...
BTW: MY PCP is a disaster... he got frustrated at my reluctance to take a major AC drug, and then just blew me off... didn't even call me with the results of an initial INR test I took Thursday. I get a new PCP, but not till mid Nov.

Sorry for the LONG winded first post!

Thank you Tuson for the information. I have read about clot busting injections. And my PCP has been super nice about all this other than not doing anything about the meds killing my stomach.
I am off the Enoxaparin injections and he did change another med I was on finally. Feeling a bit better. I too do not understand why I'm going to a cancer doctor and not a circulatory doc. That is the first thing on my list when I see my PCP in a week. Cancer doc did not check for cancer this time like he did 2 years ago. I shattered my left heel back in 1985. And have had constant pain in some form or another since then. Been to countless doctors for it and all just check the pulse in my ankle and said it was fine. Cancer doctor said clots do not go away. Your body can shrink them then scar tissue is formed over them. So I think maybe his point of view is that the clot is all or mostly scar tissue from 30 plus years of untreated clots built up from my ankle to my groin. And nothing really can be done for the scar tissue. So my blood is super sticky and will not desolve new clots. And with meds it is thinned to where it will desolve new blood clots. But what if a peice of scar tissue breaks off? I have an appointment in Novemeber for another Ultra sound of my left leg. Then an appointment to remove the filter. My calf has been bothering me but the pain and some of the sweeling in my upper leg is gone. No help from the cancer doc. PCP said only thing to do is to check myself into a hospital. Really consider that last night as the pain keept me up all night. Thing is it cost me $500 to go to the ER and I am worried they will take my money then say I'm on meds and just tell me to see my doctors and kick me out without doing anything. Last 2 Inr's were 2.6 and 2.2. Another next week. I agree I need to fire the cancer doctor. I checked him out and he has bad reviews from cancer patients.

FYI: hematologists are often oncologists as well. Not at all unusual to be referred to a hematologist who happens to also work in oncology.

Also I’ve been on both warfarin and xarelto. I had more side affects from warfarin but they were not serious. I’ve been on xarelto for a few years now. No issues what so ever.

Get a medical opinion. I don’t believe scar tissue breaks off. I mean if you cut your skin and have a scar, the scar is part of your tissue. It’s not going anywhere.

rmb thank you for your reply. I had no issues from Xarelto either. Went to the ER but that went as expected. I did find this:

Chronic Venous Obstruction
The standard treatment of deep vein thrombosis (DVT) is anticoagulants (blood thinners). Following treatment of a clot in the deep veins with anticoagulants, the clot may resolve or, it may turn into scar tissue inside the vein. The scar tissue in the vein can cause either damage to the valves leading to backward flow or a blockage in the vein resulting in poor return of blood to the heart. The blockage in the veins is called chronic venous obstruction.

ER did the same grab my foot and say I had a good pulse that I have heard countless times over the last 30 plus years. But this time I know I have a clot or scar tissue from clot(s). The above does not say any thing about if untreated clots also turn into scar tissue. But seems likely to me. ER doc said she never heard of clots turning into or being covered with scar tissue. The above did say Ultrasound was not detailed enough to always show an obstruction. Thing is if the cancer doc is correct and the image of the clot is mostly scar tissue causeing my current symptoms isn't my current treatment just letting more scar tissue build up given my history of this? Shouldn't I have been put on clot disolving meds as Tuson has noted instead of thinners that will allow any current clots to turn into additional scar tissue? If this scar tissue I have now is the exact same as I had 2 years ago (no new clots or scar build up) why did I have symptoms again and why did they go away 2 years ago? Why did I have symptoms 2 years ago. Why switch me to Warfarin and not leave me on Xarelto. Seems to me that I really need to look for another specialist. One who deals with veins. I don't know and still can't get an understanding of this. As to why the swelling and pain went away 2 years ago and why it returned 3 weeks ago and even why it went away after I was switched to Warfarin and has now returned in my calf. If this is CVO that would seem to requier additional scar tisue buiild up or clots. ER doc ask if I would agree to surgery to my clot (or obstruction) and was going to admit me then came back to say due to the holiday weekend no one was available so just released me and said she would make recomendations and for me to follow up and contact both doc's Tuesday. Maybe my ER visit will get thing moving over the current just switch to Warfarin and wait and see. I really am tired of being sick on Warfarin and not having a clear picture of where this is going and an expected result.

I understand clot busting meds for DVTs would have to be administered shortly after diagnosis fit them to be effective. Maybe they’ve improved in that though over the years.

I’m not sure an ER doctor is the best kind of doctor to get advice from on this since they are practiced at addressing an immediate issue and then referring you to a specialist if needed.

rmb, that was my point. I maybe should have been put on clot disolving meds weeks ago when I had upper leg symptoms. But I am not sure. As all swelling was gone and then returned but with pain in my calf and not along the vein in my upper thigh/groin.

Exactly why I wrestled with going to the ER. I am not a big ER fan. One it is expensive and two those docs have a lot to do with folks in very bad shape. So unless I am carried in or ordered ny a doc to do so I just wait to contact my PCP or go to a walk in urgent care center. As the information from the site I posted previously stated sonagram is not detailed enough in many cases to show CVO. And maybe that is why they were going to admit me for more testing and maybe placing a stint or bypassing a section of my vein. But as it was a holiday weekend that was not possible over the weekend so maybe that is what the ER doc is recomending to my PCP and the cancer doc. I still don't know for sure. But it is not improving in my calf and is getting worse.

Yeah not sure either. I don’t know in what circumstances they administer clot busting meds for a DVT. I’ve met a handful of people on this forum who’ve had it, same with stints, just a handful, and some where it was successful and some where it was not. So I’m not sure how that’s determined. I’m sorry this is happening to you. Frustrating.

Thank you rmb. Yes really frustrating as the cancer doc seems not to have time or want to do much and just pushes me back to PCP who seems not to have the ability to treat me. Difficult for my PCP I would think. PCP has been trying and I have been spending a lot of time with him and his nurse off the books so I don't know. Still waiting to hear back from cancer doc's office. They are pulling the ER records for him to review. Just bad luck things worsened late Friday night on a holliday weekend. I'm sure everything is backed up and nothing is going to be done anytime soon. And I fear the cancer doc won't do anything. If he doesn't do anything this time I will switch to someone else. Probably will switch to someone else anyway. That was the plan just before this calf pain started. Cancer doc would need a 180 turn arround and knock it out of the ballpark for me to keep him. But changing now would just mean a even longer wait. My fault I guess for not switching 2 years ago.

@JLH443, I know it’s been a while since your last comment on here, but I want to check in and add some information that I hope can be of help to you and others.
First of all, the enzymes that Tucson mentioned they’re taking to dissolve their blood clots are not able to be properly monitored for effectiveness, which is a BIG reason most medical professionals don’t mention or recommend them. There are medications that certain trained specialists, like Interventional Radiologists, can administer during minimally invasive procedures to help break up blood clots. I actually had it done in the Spring of 2014, a full year after my DVT was diagnosed.

Secondly, hematologists specialize in blood disorders which include genetic and acquired blood clotting disorders that can cause or contribute to the formation of blood clots. They can educate you about the various known genetic and acquired disorders and perform the proper lab testing to check for and diagnose them.

Also, considering your specific issues, I would definitely recommend consulting with a knowledgeable Interventional Radiologist so they can evaluate your vascular system for possible obstructions or compression of veins, like the iliac veins in the pelvis (more commonly known as May Thurner Syndrome).

I’m going to add a post to the board about myself and my personal experience over the last 8 years in the hopes it might help others in similar situations. I hope you’re doing well.

Hey, thanks for checking. As I posted the Hematologist did check for cancer with my first go round but that was all and no more testing seems to be done just treatment. I did have to go off Warfarin for a surgery in April and developed PTS. Now I am on Tramadol to reduce my leg pain enough so I can sleep. Back on Warfarin 10mg daily. Just waiting for the next problem to happen. Been to see a Radiologist, Vascular Surgeon, and another Hematologist and they all say get out and don't come back. With the PTS I can only walk about 1/2 as far as I could in May of this year. Even went to a pain management office to see about some other way to block the pain or different medications and they declined kicking me back to my GP.

From what I have read I would suspect the next problem will be leg ulcers.