Was diagnosed with DVT and PE 2 months back and wanted to ask what to do about feelings that I may still be clotting while on Warfarin. Clinic and GP are cynical about it as I have been in range but the feelings I have are very similar to what I got in my other leg when I got my first DVT. Lots and lots of people in forums testify to continuing to clot needing to change dosage or the type of Anti-coag. Just don't know how the clinic can be so dismissive. Feelings are mild to medium tightness etc.
1. GP surgery is only taking over phone app and very dismissive.
2. Would A&E bother with someone saying they've got mild/medium discomfort?
I suppose what I'd really like is for a scan of my other leg and if I'm proven correct to then consider changing my meds.
How likely is this?
Also starting to feel like Warfarin is making me feel sick and bloated. Tummy gurgling and just not feeling right. Didn't have that at all before the meds. Reckon it started a month in. Limbs feel weak, tummy not right and feel slightly nauseous. Anyone else feel that?
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Worse feeling I had was uncontrollable shivers and feeling similar to what you get when adrenaline is pumping around your body after a sudden shock or fright. I'd feel nauseous and had loss of appetite. Lasting for hours at a time I eventually went into A&E about it. Doctor theorised it as anxiety. While I do accept that is possible, I fear serious consequences if they were wrong. After feeling around my tummy, listening to my breathing and an ECG, I was sent on my way.
Thankfully those terrible feelings largely subsided except for 2-3 more sporadic episodes.
I hear people talk of a Vagal nerve too as being a possible culprit for crazy feelings
If you are taking medication religiously then you are in the safest place possible but if you are worried ring your gp up.
Well, I’ve been on warfarin since 1998 and the only time that I have any problems with my INR being too low (that’s when blood becomes thicker and there is risk of clotting) is when my diet has included a lot of salads and green vegetables as it’s the vitK that affects my experience of low INR reading. I have my own coagucheck machine which is a godsend as I can regulate it myself quite successfully if I have any worries.
I haven’t experienced any side effects on starting Warfarin except it has made my hair thinner as I’ve got older, unfortunately not my body!
My advice would be to continue to speak to your doctor about if your INR range could be looked at again considering your feelings and anxieties about it. Hope you find a good solution.
Hiya. Just got one of these Coagucheck self check devices. Got it 1 week ago and have wasted 5 of the 6 free strips! Blood volume never seems enough and it quickly throws an error. Down to my last one and very anxious not to waste it as well. As you know these strips aren't cheap. Almost threw it against the wall out of frustration. Had feelings that it could be defective or that is just a scam way of getting you to use loads of the test strips. It's as if you need a bucket load of blood. The Lancet that came with it hardly pierced my skin even on max setting. Just invested in another Lancet... Any tips and tricks much appreciated. Even to just know I'm not the only one to struggle with it. Hope it gets easier. Read so long forward to getting quick readings.
Hi, well done getting the Coagucheck. The trick is to just relax with it and not to get frustrated. It would be good if you could have a little look to see if there is someone on YouTube to watch them do it. You don’t need a load of blood. It’s getting comfortable with the placement of your machine and have everything laid out ready. Make sure your hands are warm. Don’t touch the test strip where the blood goes when placing it in the machine and don’t touch the area when placing your blood droplet on the test strip. What is the error message?
I order my strips from my doctor, (after persuasion) and it won’t hurt to ask, after all it’s to make sure you are kept well. Sometimes I pay for mine from eBay and they have been accurate when I have calibrated against my visits with the surgery nurse, not too expensive. You can request to have your INR done at your surgery once a week too until you feel confident with your own machine. Hope that helps.
I can't remember what it says exactly but it certainly is along the lines of the blood not being enough.
There is a video on YouTube that shows everything which I feel I follow but perhaps the critical moment when you transfer the sample off the finger to the strip is where there must be great sensitivity and technique involved. I've been trying to apply the blood from the side and I only touch the strip at that point. I'm either doing something wrong or the device is faulty. Never thought it would be so difficult.
HI, I self tested for over 15 years. Couple of tips, I had to change from pen lancet to individual lancets to get good amount of blood extracted. I asked the nurse at my surgery what they used and she recommmended as there are lots of different needle thicknesses and it was trial and error when I purchased online. Also ask your pharmacist, they may be able to advise and get a few samples in for you to try.
I have seen several people do the the test in different ways. I used to leave the device on the table and take my finger to the side of the stip and gently swipe the blood onto the capture area but in earlier times, I use to try and drop a blob of blood directly onto the strip which worked until my vision deteriorated.
I always washed my hands in very warm water, dried them and then shaked them to encourage getting the blood down to the tips and whilst probably not good pratice, once I had pricked the skin, gently massaged the finger to encourage blood flow (technically known as milking the finger) I also used to change fingers from test to test to prevent sensitivity of finger tips.
I no longer self test as I am now on one of the new drugs but would heartedly recommend and also had another much younger family member who benefitted for many years. Good luck
I have since managed to get it to work by doing exactly what you said. I bought a different Lancet and now drop the blood from the top. Doing it from the side seemed to need more blood than from the top.
Now, I do the following; after turning the machine on, making sure my finger is nice and warm. I then prick my finger first trying to get an enough drop of blood then I press M" button on the monitor where it would bring a drop of blood on the top of the screen and wait for the bleep.
From the sound of the bleep you'll have about 30 seconds or so to do it but remember by this time you would've already drawn the blood from your finger anyway.
Hope this helps.
Also another thing, are you not getting the strips from NHS...?
If you are concerned go to A&E – you shouldn’t feel embarrassed, scared or like your wasting peoples time, you have a diagnosed health issue.
Diagnosed end of November, put on Apixaban – everything was OK.
Two weeks ago (same leg as original VTE) started to feel heavy + tight, took myself down to A&E, ultrasound confirmed next day another (different) DVT in same leg (original site was clear).
You know you – and if something feels amiss, get it checked. Please!
I went to A+E with the same symptoms as the first clot but due to the results of the D-dimer I was refused further investigation/scans. Was told the treatment is the same so it’s not worth the radiation risks to confirm the diagnosis.
...this is probably the most plausible question any one who previously had a clot and been on anticoagulant since should be asking; I had my first clot in 1994 and for the next 20 years I asked every GP, Doctor and Consultants the same question and they all said "...no you can't re-clot" in 2016 and 2017 I found out how wrong this was. So I'd take it with a pinch of salt what the GP says...
Wonder if it's ignorance or straight up lies. Find it hard to believe the Consultants would be ignorant to the facts. I'm assuming the biggest cause for re-clotting while on Warfarin at least is if INR drops low. Which is very likely if you're not consistent with your diet and have blood draws more than a few weeks apart.
Warfarin can make you bleed internally and you don'tknow until you look like you're 9 months pregnant and in pain. I have had 5 blood clots in the last 2 years. Each time I was on a blood thinner. I was put on warfarin a couple of months ago. I almost bled to death internally. I'll never take it again.
OMG Please go to an emergency room right away and get checked. I have a small Out-Patient emergency room clinic close to my home. They have caught things that the doctor has blown off. First, Warfarin almost killed me. I slowly began to bleed internally, through the stomach muscles. I developed a hematoma in my stomach on the left side. My stomach hurt to the touch and I was very bloated. I had no clue what was going on. I was lethargic and lucky if I could get out of bed every once in a while. I got to where I was so miserable I went to my neighborhood emergency clinic. They pulled all the shots examining me, and then called an ambulance to transport me to the hospital. The doctor said had I waited longer I could have died.I stayed hospitalized for 8 days due to internal bleeding. And yes, you still can get blood clots. I got 4 more after my first one and while on my blood thinner. I've learned to listen to myself now. I was the worst about thinking oh it"ll go away. Find a great out-patient emergency room clinic near you and go every time you think somethings not right. I don't go to the hospital ER because of the 4 to 5 hour wait time. I'm in and out usually in an hour at my ER clinic. The doctor knows me by my first name and he knows my condition. He takes me seriously. He will always be my first line of defense. He has called the ambulance to transport me two times because of the serious nature. PLEASE get off Warfarin, it is a dangerous drug. There are many others that you can use. Once I got off Warfarin, I felt human again. The lethargic feeling it gave me was over whelming. I honestly couldn't get up to walk sometimes. Good Luck I hope you see this!
I’ve gone to ER and told them my suspicions, on two different occasions, of having a blood clot in my legs, Even though there were no visible signs, but my legs felt bruised, I had an ultrasound done. Both times I was correct, I’ve now had a DVT in both legs. The first time I was not on A blood thinner, however, when I got the second DVT after surgery I was on Eliquis… The dose was too low and the blood clot grew, which I knew because I now had swelling and discoloration on my ankle… my surgeon blew it off, but Hematologist sent me back for another ultrasound to confirm that it had grown. I was taken off the Eliquis and put on warfarin. I also have Afib now… they self monitor at home, which I’m very comfortable with.
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