My INR 1.80 WORRIED that I could have another PE

Hi Mardie,

This soon after a PE you would still have pain (I did, where the original clots reached the pleura) and it does come and go.

Not sure if your target inr is the same as mine, but mine is supposed to be between 2.0 and 3.0. So an inr of 1.8 is not too far off.

When I first went on to warfarin, my inr was all over the place. Gradually, it became more stable, although it still has the odd wobble to keep me on my toes. In the early days and when it misbehaves, they test my inr weekly...your surgery should be doing the same.

There are a lot of myths about warfarin, I will try and debunk the ones I know of...

You can still have vitimin K foods. You just need to eat them consistently (i.e. steady amounts with no big variations).  Same goes for most foods...you can eat them ok, just don't suddenly increase or decrease something.

Alcohol is not much more of an issue if you are on warfarin than it is for anyone else. i.e. 2-3 units max. Same as above - no sudden binges. Also, alcohol generally reduces inr, not raises it.  Can't remember the reason off hand, but it is something odd like a smaller amount reduces it, but a large amount increases it.

People shout about it being a poison. It's not, it is a drug. Like any drug - too much is an issue. I would feel safer taking too much warfarin than too much paracetamol....

Your inr will vary - everyone's does. It's just that their's isn't being measured. Something as simple as a cold can raise it. Sometimes it will do the reverse (the body is a funny old mechanism). If you take antibiotics, they too may raise or lower it.

You generally can't feel if your inr is high or low, but you may notice it changing.  If mine drops suddenly, I get headaches. If mine goes up, I don't seem to notice.

If you are worried, ask the warfarin clinic nurses. The ones in my surgery are great.

HTH

Peter

Hi it is very natural to feel worried I had a massive PE nearly five years ago nothing proved as to why it happened I have been on warfarin nearly 5 years recently changed to apixaban three months ago. Like you my INR went up and down more down than up and dose changed accordingly. My advice is to take the advice given by your Gp and INR clinic I was having tests every week for months and months and dose changed accordingly. Again like yourself I wasn't eating food to contra indicate the warfarin lots of things can affect your INR level including stress. Try to stick to a well balanced diet as if you are not eating sufficiently this also has affect. There is light at the end of the tunnel so to speak I have been told I will be on anti coagulation for life and first off told recovery could take up to a year before you feel more like your normal self, be sure to try to keep calm relax and talk like you are doing to people that have had the same thing happen. I came across this page and found it very helpful. 

Keep well and best regards tracey xx

oh honey you are not paranoid you are normal and if I were you I would get myself to the ER and tell them you have pulmonary embolisms and you're having these pains. They will have to do a CT scan on you and you might find that your embolisms are gone as I did the same length of time I had them as you have. I had mine in November and in January I was back in the ER with chest pains and they immediately took me and did a CT scan and an echo and an ultrasound and they found it all of mine were gone. Even knowing that I still freak out if I have any kind of problem breathing. And I have been back in the hospital one other time and at one time about 2 months ago my INR was 1.5 and I was doing everything right. They adjusted my Coumadin and two weeks later it was 4.0! So they adjusted it again and Monday it was 2.5 which was perfect. But I go every two weeks and have been doing this since November. Well actually I entered the hospital on Halloween which is appropriate! But I was there for nine days and they got it to 2.3. The more often I have it checked the less anxiety I have but they have put me on an anti-anxiety medication because my doctor puts everyone on this , those like you and I who survive the initial PEs. Do not and I mean do not be intimidated for your fears. This is you it is your life and it is up to you to take charge so, if you are still scared and that concerned than a visit to the ER would not be out of line. Good luck and I know you did not expect a book for an answer! Stay in touch as this is a good site!

A symptom (or side effect) of PEs is anxiety. It is one of the symptoms that aids diagnosis and something that almost every PE patient suffers from for a while after diagnosis. Just do a straw poll on here and you will see incidence of anxiety is unusually high.   Not sure how effective anxiety meds would be combatting this.

Also, some of the modern anxiety medications can be a nightmare to come off, so you may be trading one issue for another. If you do go that direction, have a chat with your doctor about how to stop taking them them as well as starting them.

HTH

Peter