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.
-
Look at what my best friend did with my picture!
-
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.
Im glad to hear that you will undergo this operation. Does the gynecologist have any further information about this growth, e.g. are these benign? Is he confident that removing these will clear the problem? Further, has there been any evaluation regarding whether the weight loss is associated to these growths. Did the Pelvic ultrasound show anything?
With respect to previous response from Jeremy, then for INR of 9, the correct thing to discontinue warfarin for 5 days (or similar, depending on the K-vitamin metabolism in the patient), but warfarin has a half life of 20-60 hours, so it takes long time to leave the body, and thus to lower the INR. The bleeding risk at INR of 9 is high (especially for older patients).
Wish you all the best of luck with the surgery. It is important to remove these growths, and then look seriously in the the clotting and weight loss issues (although all these may be somehow linked).
Thanks for the correction. I should have read better the original message. I agree, 5 days to correct INR of 4 is too much.
If interested:
http://www.pharmaceutical-journal.com/learning/learning-article/how-to-treat-a-patient-whose-inr-is-too-high/10965810.article
For now we will just manage my ovary pain with tramadol. Not happy about it but there's nothing I can do.
6 months on coumadin. My INR was 2.0 in early December, and was 2.1 when my doctor retested me 2 days ago so she is pleased.
Had an ultrasound done yesterday on my arm, the clot is still there. No idea if it's any bigger or smaller, won't know for a few days. I'm getting pretty frustrated at having a clot hang out in my arm for 6 months. I don't know why my doctor won't let me see a vascular surgeon.
I'm seeing a new hematologist in 3 weeks since my last one was horribly rude to me. I know I will need to be off coumadin to do the genetic testing. Does anyone know exactly how long I have to be off of it for, in order to do these tests? Can I be on a different blood thinner at that time, or no blood thinners at all? The rude hematologist told me it is a waste of time for her to see me until I have been off coumadin for a month. Is a month the standard time? I asked my doctor if she can take me off the coumadin or put me on something else in preparation for getting tested with the hematologist, because the last thing I want to do is wait 3 weeks for this appointment, and then wait another month after that until I can get testing. Unfortunately my doctor said "Let's wait and see what your hematologist says".
"WAIT" is my doctor's favorite word. All we do is wait. Wait and see.
What a situation. Do you need a permission from your doctor to see a vascular surgeon? Would you be able to contact a vascular surgeon directly? I do not know what to suggest, apart trying to get another opinion.
Obviously, your doctor wants to wait until the clot gets more or less dissolved before doing this operation. Unfortunately, this mean that you have to live with the ovary pain for some time. The risk of bleeding would be indeed high during this operation while on antioagulaiton. However, the question is whether you can keep the time off anticoagulaiton as short as possible, and thus you can undergo the operation. As an example, you could switch from warfarin to heparin that has much shorter half-life for about 2-3 weeks until the warfarin has left the body. Then you go off heparin 24hrs before the operation, but this medicine is really quick to break down. After the operation, then Im not sure when you can start again on heparin, but that depends on the rsk of bleeding. By swithing to heparin from warfarin, you may only have to be one to few days off anticoagulation, and this short time may not increase so much the risk of clotting. Perhaps this option can be discussed.
With respect to when is testing possible, then because the half-life of warfarin is so long, then you would have to wait some time until your body has broken down the warfarin. How long time it takes depends from person to person. I would think that warfarin should be completely broken down within a month, and probably well before that time. On the other hand, you do not stop taking anticoagulants until your risk of reclotting is low, and as you are protected by the anticoagulants, it may not be necessary to know about genetic clotting factors while on it. To do a reliable test for most (not all) genetic factors, you need to be off anticoagulation. Also, it is important to realise that even though you have underlying genetic clotting factors, it does not necessarily mean that they are important in causing clotting. The fact is that large part of the world population has some type of genetic mutation that promotes clotting but never clot. Basically, there are some people that are more prone to clot than others, and the exact cause is in many cases never found.
My only advice is that get another opinion. Perhaps you could try to talk to a vascular surgeon. Hopefully the new hematologist wlll provide useful answers, and hopefully will give you a clearance to undergo the ovarian surgery so you do not have to live for the next weeks in pain.
So he took me off blood thinners. I had blood drawn today for 19 different hypercoagulable tests. The phlebotomist was stunned, she'd never had to draw that much blood in one go. 20 vials to start, which she would later divide down into 32 total tubes. After I got home she called back and asked me to come back in as she needed three more vials.
She had quite the conversation on the phone with my doctor before drawing my blood, as this is the largest order she has ever done. Out of all the tests, she had only ever drawn for 2 of them before. The other 17 she has never even had a patient walk in the door for. My hematologist is not kidding around it seems, and is testing for every far flung obscure reason for clotting he can possibly think of.
The results will be available in about a week, but the receptionist at my hematology office says they cannot get me in until the end of the month. Seems quite excessive to wait that long just for me to be told some blood results, but all I can do in the meantime is continue to call and check for cancellations for earlier days.
If the tests come back showing nothing, I can finally be approved for surgery on my ovaries. YAY!!
When did you come off warfarin? There's usually a wait of 4-6 weeks after coming off warfarin and before drawing blood for clotting factors, since warfarin can affect the results of some (but not most) of the tests. Maybe your hema figures he'll just re-rest if he needs to later. Getting you on to your ovary surgery is probably priority at this point.
SO glad to hear that things are getting done for you! Hang in there, you'll get through all this chaos and come out better on the other side!
I was surprised when I found out that the hematologist did not have on site blood work. My primary doctor does all blood work on site, so being sent to a lab site was a bit different. I think most people who have to get such large scale bloodwork done likely do have it done on site with their hematologist, that would explain why she was so alarmed by my order! Haha.
The hematologist is totally on board with getting my ovaries fixed and has no desire to waste time. He was quite annoyed when I told him I have been in limbo for 7 months. He pulled out his cell phone and immediately called up my doctor and kind of lost his temper trying to figure out what the heck kind of wonky treatment I've been getting all this time.
It's a relief to have a doctor who is fighting for me. I'm finally seeing the silver lining to all of this :)
I am glad you found a doctor, i.e the hematologist, which is taking the right course of action. It is incredible that your previous doctor kept you with this problem for whole 7 months.
Good luck
I have hyperhomocysteinemia. The hematologist says I have a mutant gene that has caused elevated homocysteine in my blood, which can lead to clotting.
Says all I need for this is to take folic acid daily. Easy!!
Relieved to finally know WHY I went through this, and to learn that it is a mild case :)
Working on scheduling my laparoscopy finally, and am so excited to have my full range of foods back now that I'm off coumadin. And a natural source of folic acid is LEAFY GREENS!! Yay!!
Maybe you can finally get moved through and past all of this.
I take folic acid daily for a different health issue. It's cheap and easy. Can't be mad at that.
Glad you can start moving forward!
I had my laparoscopic surgery performed 3 days ago. Was in the hospital for 3 days total. All endometriosis removed.
On the last day, I started having issues with my IV, it was leaking blood and fluid all day, and sending pain up my arm. The nurses weren't concerned so I brushed it off.
Looks like that happened because the the IV catheter broke off inside my arm. I went to the ER yesterday and have been diagnosed with a foreign body in my arm vein, AND clotting around it. The ER doctors were alarmed and didn't know what to do, so they consulted a vascular surgeon to see what they should do about it, and the surgeon said that he'd be able to take care of that in his office outside the hospital and to call his office to make an appointment. I was then sent home.
I called today, the office cannot get me in for a month. Yay.
I'm pretty darn scared that I get to have this long piece of plastic in my vein for a month, with a clot just slowly building up on it. Apparently if it were that big a deal they wouldn't have let me go, but still, this is pretty stressful.