"high" INR

[Gnusgal]

Alright, based on the information I've gathered here on this forum, it's more dangerous to have a LOW INR than a HIGH one. Am I right in assuming this? Well, two Fridays ago my INR was 2.6 (my target range is 2.5-3.5), so my doc was happy and left things alone (first time since I started!). Then this past Friday my INR raised to 3.6. I know EXACTLY why it changed. I didn't eat as much vit. K as I had the week before. As a matter of fact, I think I had very little because we were trying new recipes and eating out most of the week. So when my card's PA told me the number I told him this and said that I would be sure to eat more vit. K this week. But they changed my dose anyway. It isn't really much of a change. I had been alternating between 8 and 10 mg and they changed me to 9 mg every day. I don't really see much of a difference in these dosages, so I'm not complaining much about that, but it annoys me that the PA said that 3.6 was a "dangerous" INR, and we needed to try to get it back in my range, when everything I read here indicates that 3.6 is not really dangerous, it's when you get WAY beyond the range. I can't wait until I have my own test kit so I don't have to deal with this all the time.

Thanks, I just needed to vent...

 

[ILoVeNY25]

Hi Niki,

As others will agree with me, 3.6 is not a "high" INR. You're in the 2.5-3.5 range, 3.6 is not high. I believe you should go with what your doctor says, but many of us have had high readings, Mine was once 7.1. I'm currently battling with my INR as well, though I've been dangerously low, as low as 1.4, Last week was the first time I've been over 2.0 since July, I was at 3.5 exactly. My surgeon and cardio want me to be on the higher end, He said if I'm at 5.something, It's better than being at my 1.7-1.9 regular level. He said if my gums start bleeding, That's good and that's where he wants me to be. Every person is different and you should speak to you cardio. Since I'm a "triple" valver, they belive I should be at a higher 3.0-4.5 range, due to my INR histories. I would not be worried about your reading and make sure you get tested again soon to see how the adjustments are going, Good luck and take care!

 

[Nancy]

If your INR is in the higher range, 2.5-3.5, sometimes you have to remind medical folks of that fact. There are other valvers who are in a lower range (not double, triple or mitral valvers). I have found that when there are people other than my husband's regular doc (say, if he's on vacation), they don't know his range. I've had to remind different people on several occasions that he's a double valver. They don't like to read the chart for some reason, and some of them have assumed that he is a CABG person with afib. They always give me a hard time. It's important to keep in mind that not everyone knows about the therapeutic range for mitrals, double and triple valvers.

One of the most difficult times is when you're in the hospital and there are lots of different people doing the pro-times.

 

[Gnusgal]

I'm not worried about my INR at all. I was actually quite pleased with it. I'm annoyed with my card for being worried about it.

Also, they are aware of the range. But they seem to feel it is a very STRICT range, and being anywhere over 3.5 is supposedly "bad." At least that is the impression I got. One time I got to 3.9 and they went crazy. But I am not worried in the least about a reading of 3.6. I'll be having my blood checked again on Thursday, so I'll let you all know what happens.

Thanks,

 

[LUVMyBirman]

Hi Nicki,

3.6 is a blessing in my book.

We have a pharmacist that frequents this site. His name is AL...he also regulates patients like us on Coumadin.

I self monitor and also have been self regulating for almost two years now. Prior to..... I had a Coumadin nurse that would change my dose everytime the wind blew. Perfect example would be a 3.6 INR. She would automatically adjust me down. You can guess what happened the following week. 2.6 or so.

If you graph your INR and dosing on a spreadsheet.... Over time you will see where your level should be. Have to admit, it took me over a year to figure out how awfully managed I was.

My new cardiologist requires me to call in my readings every 2-3 weeks. This will aide them in the event I am hospitalized, which I do agree with.

Good luck

 

[Guest]

I have statistics to show that if your INR is 5 or less for 28 days or less, then you have no greater chance of bleeding than if your INR were at some lower number for the same period of time.

The PA who changed the warfarin INR at 3.6 demonstrated twice that he/she doesn't understand warfarin.
1. The INR test is not so accurate that you are sure that it is actually 3.6 and would not be 3.5 if you tested it again.
2. A dose change from 10X3 = 30 plus 8X4 = 32 or 62 mg/wk
to 9X7 = 63. Is actually an increase.

Your care is worse than no care.

Looking at this too, you are probably using 2 or 3 different strengths of warfarin - or else taking lots of 1 or 2 mg tablets. This costs you extra money. If they really knew what they were doing, they would figure out a dose that you could reach by taking one-half tablet, one tablet or one and one-half tablets but they would all be the same strength to save you money.

 

[Granbonny]

Thanks Al

Thanks Al

For being here to help out with us coumadin takers. I did my home test yesterday... It was a 4.0..highest ever.. But thanks to your posting..drove to store and bought some greens..We just came in from a motorhome trip..don't remember eating anything green, ect. Had some coleslaw last night..maybe a sald tonight and will test again Monday. Not suppose to call in for another week. Thank goodness for the home testing.....Bonnie

 

[Guest]

It is amazing how much we have all learned from each other over the past year, isn't it.

I'm looking forward to Las Vegas.

 

[Gnusgal]

I know I, for one, would have NO CLUE how clueless my card is about INR if it weren't for you, Al. I'm still unsure of how to handle it, but hopefully when I get my home tester I won't have to worry about it so much. I also need to ask for a prescription for some 3s or 4s. Right now I only have 5s and 1s that I combine to add up to 9 right now, and from what you said before, Al, it's not a good idea to be taking so many different pills (because of slight differences in dosage?).

Going in to have my INR checked this afternoon. Keep your fingers crossed that "the powers that be" will be satisfied enough to keep my dosage the same instead of screwing around with them, yet again... (of course, I won't know the results until who knows when)

 

[Sunshine susan]

I've been on coumadin for 3+years now and go to a "coumadin clinic" in my cardio's office. I'm fairly "regular" (between 2.5 and 3.5) but when it goes up a little over that, the nurse doesn't mind at all and says to just eat a dark green salad or two (the iceberg type lettuce does't have much Vit K, it's the dark greens). She gets more concerned when it goes down on the low end and is more likely to adjust my does at that point. I'm very happy with the "service" but still want my own machine. Good luck! Susan

 

[Guest]

That person is doing their job correctly. They understand warfarin and its risks.

 

[Gnusgal]

More evidence that my card's office doesn't understand coumadin. I had my INR tested on Friday, got a call from the card on call saying it was 3.5. I'm thinking "good, it's in range, they'll leave it alone." Nope. It's "on the high end" so he lowers my dosage from 9mg to 8mg. I told him that I've been sick this week and not eating quite as well, and started antibiotics on Wed. He agreed that the antibiotics could have effected my numbers, but wanted me to change the dose and retest on Monday. So now I'm REALLY wanting my home tester so I can stop dealing with these (for lack of a better term) idiots. Don't get me wrong, I love my cardiologist and would never change to someone new, but it seems very obvious that they are not familiar enough with coumadin to be the one managing my dosages. Besides the fact that (since Fridays are the easiest days for me to get to the lab) I end up talking to different doctors each time I have a test done, which I'm sure they are all at different levels of knowledge pertaining to this area.

On a slightly brighter note, I got a call from QAS this week to let me know they were working on my order and would start talking to insurance. The only problem is that I'm changing policies (same insurance company, one of the other options) on Oct. 1, so I will have to meet a new deductable Which means I'll probably end up having to pay for the majority of the machine myself. Fortunately, Greg did say we can work out a payment plan. I'm not too terribly worried about it, because I know that in the long run it will be worth it. Though we really don't have ANY extra money, much less an extra $2000. Right now I'm the only employed person in the house, as my husband is going back to school. Fortunately, both our families are very generous and would help us out if we really need it.

 

[Sierra Bob]

My target INR is 3.0 to 4.0. My "acceptable" INR is 2.5 to 4.5 and my cardiologist is not overly concerned if it reaches 5.0. He is more concerned with a stroke than with some minor bleeding, as am I. Obviously, if my INR is 2.5, I would increase the dosage, or cut back on greens. By the same token, if it is over 4.0, I would make an adjustment in the greens, or Coumadin.

In 2.000 when my GP was monitoring my INR, it reached 11.6 and I spent eight days in the hospital with internal bleeding and an unsuspected case of pneumonia. Needless to say, my GP no longer monitors my INR. I do, with the Protime Microcoagulation System, thanks to this group. After doing this for two years, I find it fairly easy to make the necessary adjustment in greens or Coumadin.

 

[Guest]

Sierra Bob, Have you had a clot while your INR was 3.0 or higher? The reason I ask is that the American College of Chest Physicians has no recommendation for an acceptable range to be as high as 4.0 and certainly nothing as high as 4.5.

I have written that I do not worry about INRs up to 5.0 WHEN the person is staying there for 28 days or less.

The INR is like driving a car. The higher the INR (like speed) and the longer you stay there, the more likely you are to have a wreck.

A few years may not be long enough to see a major bleed at 4.0 or 4.5 but you are talking about a lifetime.

Prior to 1990 the INR system was not used, and people were often kept at what we now know to be too high levels. But looking back at what was done, the experts found that staying at higher than 3.5 year in and year out prevented no clots but did increase the risk of serious bleeding. This is why if you talk to people who took warfarin before 1990 you hear all sorts of horror stories about people bleeding.

If you had a clot at an INR between 3.0 and 3.5 this is a different story because it happens so rarely that there is no good evidence as to wht you recommended range should be. But is you haven't, you should have a serious talk with your doctor about lowering the acceptable range.

I have served as an expert witness in several lawsuits regarding warfarin and I can almost assure assure you that you are worth more to your family dead than alive. If you died of a hemorrhage, a lawsuit against that doctor would be a sure win.

 

[Gnusgal]

And it just keeps going...

And it just keeps going...

Well, now I'm really confused... On 9/13 my INR was 3.6, so they changed my dosage from alternating 8/10 mg to 9mg every day. The next week (9/20) my INR was 3.5 and they, yet again, changed my dosage (to 8 mg). Now, three days after the change (is this too soon to tell anything?) I am UP to 3.8. THIS doctor (remember, I always end up with the on-call doctor each time because I can't get my blood checked until after 5 o'clock.) dropped me to 6 mg! Isn't this too much of a drop??? I don't want to end up with my INR shooting way down. I remember someone saying something about a rule of 10%, or something like that... But it was early in my exploration of this site, so I don't remember quite right. Why would this doctor feel that dropping my dosage 2 mg would be the right thing to do??? Should I actually follow her directions or what?

Man, I'm really starting to regret this surgery...

 

[Guest]

You are not the only one having trouble - not by many thousands of people.

AstraZeneca is trying to bring out a new drug to replace warfarin. They have to prove to the FDA that it is superior to warfarin. They based the amount of improvement they needed on the complication rate reported in medical journals. When they ran the study, they showed no improvement over warfarin. Why? Because the complication rate was based on physicians managing warfarin. The study compared the new drug to warfarin managed by clinics like mine. We do so much better at managing warfarin than doctors that they couldn't show any improvement.

I had a cardiologist tell me that he was glad that I was monitoring warfarin for his patients because he did not feel that he did all of his specialized training just to keep monitoring warfarin. He was a great guy to work with becausehe knew his limitations and knew how to work around them.

 

[JimL]

Obviously, Niki, if you can get to a clinic run by Al, or someone competent like him, you'll get better treatment. The nurse who checks my INR, Jackie, is excellent, and understands what she is doing.
But apparently many doctors don't. I started self-dosing myself in the first week or so out of the hospital. I realized I had to take control of my own coumadin management when the surgeon gave me a dosage change that would have put me almost to an INR of 4; I told his nurse No, I wasn't going to take that, and then told her what I was going to take, and my INR stayed right in its range.
Currently, I take 41 mg per week, and my INR slowly climbs. So some weeks I take 40 mg, and my INR slowly falls. That's sure to change, but I know what to do when it does. I sure wouldn't want to change my dosage by 14 mg per week!

 

[Sierra Bob]

Hi Al---Thanks very much for the reply to my post. Sorry about the delay in answering your question, but we had to go to the SF Bay Area.

No, I have never had a clot. I did not mean to imply that my cardiologist is unconcerned at the INR high range of 4.0 to 4.5. As I indicated previously, I was to adjust my vitamin K or Coumadin intake to lower it to below 4.0.

The following is the specific recommendation by my cardiologist to my GP whom was monitoring my INR at the time: "I would recommend an INR of 3.0 to 4.5 but would allow the INR to drift to as low as 2.5 which is the lower lying limits of acceptable in some of the literature." He verbally told me to keep my INR between 3.0 and 4.0, but 2.5 to 4.5 was "okay" and he wouldn't be concerned with an occasional 5.0. This is certainly different than what you are telling me!!!! Actually, I try to keep it between 2.5 and 3.0 as at any higher level I am easily bruised.

I have never had a lot of confidence in my cardiologist other than the fact he probably saved my life by arranging for immediate open-heart surgery for my quadruple by-pass and aortic valve replacement. I was very disappointed to learn about my St. Jude aortic valve with the Silzone coated sewing cuff through this VR Forum rather than from my cardiologist. I would seriously consider changing cardiologists if there was an alternative here in the Sierras.

I will certainly discuss my INR range with him at my next echogram and stress test. Thanks again, Sierra Bob

 

[Gnusgal]

Woo-hoo!

Woo-hoo!

Well, I finally hit 3.0 on my INR. Which I'm thrilled about, BUT I'm not real thrilled with the on-call doc's instructions. No, she didn't change my dosage (that would REALLY be dumb), but she told me to re-test in a MONTH???? That seems rediculous when I haven't been the same # twice (or even close). The scary thing is, if I hadn't found this site, I wouldn't even question it (well, maybe I would, but I'm not sure). I will definately be calling my card's PA on Monday morning to reccommend that I get it sooner than that (one week, would be my preferance). I'll let you know.

I can't wait to get my ProTime machine!

 

[Granbonny]

Last surgery?

Last surgery?

Niki, I think someone ask you before, but when was your last surgery?...Bonnie