Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
26 year old female here, was diagnosed with an unexplained axillary blood clot 4 months ago. 2 months ago was hospitalized again with severe pelvic pain, thinking I had an iliac blood clot, turned out I have a very large mass on my ovary. Since then I've had quite a number of unpleasant symptoms related to that ovary.
I've since been seen by a gynecologist who wants to do surgery on me, but doesn't want to while I'm on blood thinners. He says we've only got 2 possibilities, endometriosis or cancer. I'm on week 4 of a 6 week daily monitoring program with him, to see if there are any patterns to my symptoms.
He wants me to see a vascular surgeon to have the clot taken care of, so I can come off coumadin and have my surgery for my ovary. He said if I am at an unbearable amount of pain he will do emergency surgery and just deal with the blood thinners, but would prefer to not have that added risk if it can be avoided.
My primary care does NOT want to push for vascular surgery, and would prefer I finish out the next 2 months of warfarin therapy before sending me to a surgeon. The problem is that my recent ultrasound has shown that the clot has grown. The vein that the clot is in it totally silent on the ultrasound when you reach the clot. Dead silence... the ultrasound tech thought she wasn't finding the vein at all, thought she was doing something wrong. Nope, it' s just totally blocked. No "whoosh" sound like on a normal vein.
4 months of warfarin therapy and sometimes lovenox injections, and my INR has been silly. It sat at an INR of 1 and a PT of around 12 for the first 3 months, then by the time I got up to 12 mg it suddenly spiked one week up to an INR of 4 and a PT of 36. My doctor freaked out and took me off coumadin entirely for 5 days, and had my blood drawn again on day 5. My INR was then down to 1.1 with a PT of 9. She freaked out again and put me back up to 10 mg.
She is very concerned about a pulmonary embolism. She calls me on the phone regularly to make sure I'm okay between my weekly appointments. When I was first hospitalized I had chest tenderness where the clot was fragmenting into my lung, so I know what kind of pain to look for. The weird thing is that while the clot is on the right, I often get twinges of pain on the left side of my chest, and I now wonder if that's to do with my heart.
I'm finally seeing a hematologist tomorrow. Between insurance, referrals, and a LONG waitlist, it took 4 months from my diagnosis to finally get into a hematologist.
I'm just so confused. My blood is a disaster, I have a gynecologist worried I have cancer, and I recently got diagnosed as prediabetic. I already eat no vitamin K, now I have to avoid even more things... I barely eat at all anymore.
I've always been VERY healthy. Ate very well, exercised 4 times a week, very fit, no drinking smoking or drugs... and in a 4 month span I've deteriorated into an internal disaster zone. I'm constantly exhausted, in pain, barely able to eat, and I'm getting frail from losing weight steadily.
I don't know what's going on.
I've since been seen by a gynecologist who wants to do surgery on me, but doesn't want to while I'm on blood thinners. He says we've only got 2 possibilities, endometriosis or cancer. I'm on week 4 of a 6 week daily monitoring program with him, to see if there are any patterns to my symptoms.
He wants me to see a vascular surgeon to have the clot taken care of, so I can come off coumadin and have my surgery for my ovary. He said if I am at an unbearable amount of pain he will do emergency surgery and just deal with the blood thinners, but would prefer to not have that added risk if it can be avoided.
My primary care does NOT want to push for vascular surgery, and would prefer I finish out the next 2 months of warfarin therapy before sending me to a surgeon. The problem is that my recent ultrasound has shown that the clot has grown. The vein that the clot is in it totally silent on the ultrasound when you reach the clot. Dead silence... the ultrasound tech thought she wasn't finding the vein at all, thought she was doing something wrong. Nope, it' s just totally blocked. No "whoosh" sound like on a normal vein.
4 months of warfarin therapy and sometimes lovenox injections, and my INR has been silly. It sat at an INR of 1 and a PT of around 12 for the first 3 months, then by the time I got up to 12 mg it suddenly spiked one week up to an INR of 4 and a PT of 36. My doctor freaked out and took me off coumadin entirely for 5 days, and had my blood drawn again on day 5. My INR was then down to 1.1 with a PT of 9. She freaked out again and put me back up to 10 mg.
She is very concerned about a pulmonary embolism. She calls me on the phone regularly to make sure I'm okay between my weekly appointments. When I was first hospitalized I had chest tenderness where the clot was fragmenting into my lung, so I know what kind of pain to look for. The weird thing is that while the clot is on the right, I often get twinges of pain on the left side of my chest, and I now wonder if that's to do with my heart.
I'm finally seeing a hematologist tomorrow. Between insurance, referrals, and a LONG waitlist, it took 4 months from my diagnosis to finally get into a hematologist.
I'm just so confused. My blood is a disaster, I have a gynecologist worried I have cancer, and I recently got diagnosed as prediabetic. I already eat no vitamin K, now I have to avoid even more things... I barely eat at all anymore.
I've always been VERY healthy. Ate very well, exercised 4 times a week, very fit, no drinking smoking or drugs... and in a 4 month span I've deteriorated into an internal disaster zone. I'm constantly exhausted, in pain, barely able to eat, and I'm getting frail from losing weight steadily.
I don't know what's going on.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Tell the hematologist everything that's going on, the trouble with your INR, the recent scan, the cancer concern, all of it. I don't think vascular surgery is always the answer but the hema may be able to help go through the pros and cons with that and just overall help get a handle on things.
Hope you get some help.
Losing weight is not the answer stabilizing your INR.
I struggled with the food issue for a few months but now I just eat what I want. I do stay away from spinach, kale, broccoli as I tended to eat way too much of that.
With respect to the variable INR, then Im not sure what to suggest. Perhaps one option would be to switch to another anticoagulant that does not require INR monitoring. Would that be possible? Also, if the clot is growing, I would perhaps suggest to your doctor whether the dose can be increased. As an example, if you will inject heparin (Lovenox) dose for around 70kg person, then get a dose for a person that is 100 kg, as an example.
Do you have confidence in the ultrasound technician when he/she stated that the clos is getting bigger? I mean, the ultrasound technician did not find the vein in the beginning.
I would think the most urgent step is to rule out cancer? It could be a non-cancerous tuumor of some sort, that can be removed at some stage. But to my mind, this is important to check out. You may have to stop take the blood thinners for a short during it. Perhaps you can stop taking warfarin and while it leaves the body in some days, take lovenox. You can then stop taking heparin/lovenox 24 hrs before the biopsy, but it is really quick to leave the body. Im sure the doctors told you that cancer is a high risk factor for a DVT/PE
The question is also to rule out if the clot in your Iliac vein is truly increasing, although you are on (although variable INR) warfarin. If it is increasing, then I think this needs to be looked into. I guess what your primary doctor thinks is that the body will slowly break down your clots naturally while on anticoagulation. However, if the clot is truly increasing, then either it needs to be directly removed (which can be big operation) or the vein stented, or the warfarin dose needs to be enlarged or switch to another anticoagulant and see how it goes. .
I share the concern with your doctors of the risk of PE if the clot is truly enlarging. By the way, did you have a previous PE?
I really wish you all the best of luck, and I really hope this is not a cancer. If the cancer can be ruled out and this is endometriosis, then there is not much you can do about that apart from reducing symptoms, but then at least, the focus can be shifted to the clotting issues. Good luck and keep posting..
Saw my hematologist/oncologist who was shockingly cold with me. Said she can do nothing for me until I have been on coumadin for 3 more months, said my bloodwork is pathetic, and told me to go back to my doctor and get my INR to therapeutic range. She had no interest in actually HELPING my INR, just said she has nothing for me until I spend 3 months being stable, and then taken off coumadin for 6 weeks at which point she would run tests. The one bit of advice she offered was putting me on Xarelto instead. I spoke with my primary care today and got my blood drawn, she will call me tomorrow after she talks with my hematologist/oncologist, and also the imaging center.
As far as the ultrasound tech goes, I would not necessarily trust HER... but she had the senior tech come in and double check her work because she was concerned about what she was seeing.
I'm back to my gynecologist in 8 days, at which point he will go over my 6 week chart of daily symptom monitoring and will review my imaging to decide what course of action to take. He was pushing for surgery, but my primary care wants to put the brakes on that. But if he ends up thinking that it's too risky to wait, he will do a laparoscopy regardless... but he would much prefer that my clot be taken care of, coumadin stopped, and THEN address my ovary... that way we take care of all the problems while reducing my surgical risks.
January is the latest that anyone is willing to wait, but I hate the waiting game... Using lovenox injections while prepping for a surgery is actually a good idea. So long as I'm carefully monitored after a laparoscopy, I think that would be okay.
The clot is hurting quite a bit today, it always alarms me. While the clot did originally fragment into my lung and cause a bit of chest pain when I breathed, I was not diagnosed with a PE.
I want to ask, a radiologist diagnosed that your clot was growing, not the ultrasound tech, correct? Techs aren't always the best at really knowing what's going on. I mean, sometimes a DVT is obvious on the ultrasound but the radiologist really needs to make the call.
Also, sometimes doctors will suggest putting a temporary filter in for the surgery if your risk of clots is great. I have an aunt who had abdominal surgery and she had a history of superficial clots so they suggested a temporary filter because of the surgery, as a just in case measure, to prevent PEs.
There's really nothing anyone can do to help with your INR except you need to have a consistent, healthy diet, and your doc needs to manage your INR better. I'm sorry, but I do think that's the problem. It's not unusual at all to have a stubborn INR. For some people, it just takes a while to get where it needs to be. But, I think some doctors are much better at dosing and managing your INR. I left my last doc because once my INR did finally get to in range, it never stayed their because she would constantly over correct my dosage. So I found another doctor and within a month or two I was stable. I've been stable for the most part with some occasional blips, for the last several years now.
I only have a couple things to add to all this. First, the doctor managing your warfarin is an idiot. The half life of warfarin is only 3-4 days, so having you hold for five days means you're going to be back to a normal INR, which you were. She should not have held that long. I drop about two points if I hold my dose for a day... and that might have been enough for you too. She needs to stop freaking out and do some minor adjustments... clearly has no experience with this. I would switch primary docs ASAP, if possible. If not possible, consider the switch the Lovenox or Xarelto to get things under control with your clot. It's no surprise that it might be growing, with your INR bottoming out like that.
Second, what do YOU want to do? All your posts, you say what everyone else wants you to do, but what does your gut tell you? If you feel like the ovary is the most critical, regroup and figure out how you can get that surgery. If your INR keeps bottoming out anyway, I don't think it'll hurt to go off completely for 24 hours for surgery. But, you'd want to talk through the clot risks and discuss preventative measure like Lovenox ASAP after surgery and filters.
If you think the clot is the most critical thing, then get your medicine sorted out. Get a new doc if you're going to stay on warfarin. Maybe get a new doc regardless and get on Xarelto or Lovenox long-term. That'll let you cater your diet to the prediabetes and you won't have to worry so much about Vit K. (Although, really, you don't have to worry about K anyway... just eat like you normally eat and let them adjust your dose to your *life*.)
You're definitely between a rock and a hard place, but think about what your gut tells you on what you want to deal with first and go after that. What's causing the most stress? Go after that and get it figured out.
Hang in there... I'll keep a good though that you get some good news soon.
P.S. Sounds like the hema was a jerk too... ugh!
I would ask the GYN why he thinks its one of 2 things ie endometriosis or cancer. Did he run lab work that indicated cancer? Could it be a benign ovarian cyst?
Also do you have the ultrasound report from your most recent ultrasound on your arm? That's what I would want to see versus a tech's opinion.
Be sure to ask a lot of questions about diagnosis, options and proper treatment to help you make a more informed decision. I hope everything gets resolved for you soon.
J
My INR has somewhat stabilized now. Mid November I was at a 2.1 after doing blood draws every week. For the first time ever she waited 2 weeks, and did a draw December 3rd, my INR was a 2.0. She seems to be pleased with my current dosage and doesn't want to see me again until January, at which point in time I will have been on coumadin for 6 months and she will do a final ultrasound to see if the clot is still there. Tenderness in my arm has decreased overall so I think the clot is finally going away!!
Had an ultrasound done on my ovary again and the gynecologist moved up my appointment from January to next week, which is a bit worrisome, but all in all I want to get this taken care of. If he suggests surgery again I won't put it off anymore. I just want this thing out of me. The pain has gotten worse.
My weight loss has continued to worsen. I felt I was doing better with my eating over the past 2 weeks, concentrating on adequate calorie counts, but in the past 14 days I have lost another 5 pounds. My pants don't fit anymore. My BMI is now at 18 and coworkers are starting to worry and comment that I am wasting away. I've begun to add in protein and nutritional shakes to try to help, to no avail.
What's going on with you?
There are many ways to increase your calorie intake. How about Hagen Dazs ice cream. It's got 1200 calories in each pint.
Not making light of your situation here but there really are ways to stop the weight loss.
My wife has a little cousin with cystic fibrosis, and she doesn't produce pancreatic lypase. She has to take 8 pills with every meal so replace it, otherwise she can't digest fat. She's tiny, and has always struggled to gain weight.
There are lots of reasons people can't gain weight, even if they try.
JelloLynn, I'm glad to hear that the situation with your blood seems to have stabilized a bit, and I really hope that your doctors are efficiently working through everything else so that you'll feel better soon.
Hang in their JelloLynn and keep us posted when you can.
Jello should see a doctor immediately if there is an underlying problem.
A BMI of 18 is low. Anything under 18 is dangerous.
My gynecologist got my results back from my pelvic ultrasound and is scheduling me for surgery. 2 growths on my right ovary and a small one on my left ovary. They appear fluid filled so that's good. He will try to simply remove the growths but if my right ovary looks particularly nasty when he gets in he may remove it. He thinks my left ovary will be fine.
Haven't had my PreOp appointment yet with my primary care to find out what we will do about my blood thinners. I have just about reached the 6 months mark with coumadin anyway, so I suppose this is just about the right time to be doing something about that anyway!
I'm accustomed to eating 2000 calories a day and doing strength training. I always ate well. But now I've got my Vitamin K restrictions coupled with my prediabetes diagnosis, so eating foods that are safe for me takes considerable effort. I try to continually eat small snacks throughout the day rather than break my eating up into big meals.
I know that my weight dropping has been documented, since my nurses have commented on it, but I think that is the least of my doctor's worries. My thyroid tests earlier this year were totally fine! I am going to guess that my body is stressed about all the weird things happening to it, and this is simply a byproduct of that,and that I just need to focus on getting back to normal.
I am scared about having surgery, I've never had one before, but I am relieved that it is happening. It's the big movement I need in getting myself back to normal. Start off 2016 with a bang!