This stable INR business is really p...ing me off

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I'm having similar issue with unstable INR level. I got on-X mechanical valve on 6/21/2016. My blood INR was 2.4 last week but this Monday it came down to 1.9.
My cardiologist is trying to keep it between 2.5-3.0
They won't let me self manage for first 90 days, till my INR becomes stable, so I go to the lab every week for the checkup. My nurse told me that INR instability is because of the following factors:

1) I'm still on pain killers
2) my activity level is increasing- I walked 7500 steps yesterday.
3) my metabolism is way too high.
4) my body is getting used to warfarin.


I'm shuffling between 7.5 mg and 11.25 mg warfarin during the week with the next check scheduled for next Monday
 
Agian;n866109 said:
Hi Ryan, I live in Adelaide.

As you might have already read, I'm day 1 post op.


Good luck! I'm just past 3 months post opp so hit me up if you have any questions, help or just want someone to chat too. I log in several times each day!

It's so reasuring that most people seem to have been in a similar boat to me. I think most of my frustration came from the drs/nurses at the clinic questioning what I was eating/taking differently everytime my INR went up or down, without explaining that there are other factors that can influence it (for example, as outlined by vivekd above).

Thanks to the fantastic members of this forum, I am much more relaxed about the process now and what to expect.
 
Pellicle helped me too. With the self testing I wash my hands until the water feels too hot. Then I use the rubber band trick in Pellicle's video. I always get a beautiful drop of blood that way. I wasted several strips early on.

Just to give an idea of differences among people: My average daily dose since February (1 month post op) is about 9.5 mg. My range is 2 -3 and I stay there but I definitely fluctuate between the low 2s and high 2s.
 
I'm another Pellicle fan! And have found myself becoming something of an evangelist for self-testing, or indeed self-management. I had my replacement mechanical valve in September 2014 here in the UK, coincidentally the same month as our National Institute of Clinical Excellence published a report recommending self-testing as best practice for people with mechanical valves (results show a 42% reduction in thromboembolic events, and overall a 32% reduction in death through self-management - see https://www.nice.org.uk/guidance/dg14/documents/pointofcare-coagulometers-the-coaguchek-xs-system-and-the-inratio2-ptinr-monitor-diagnostics-assessment-report2)

My doctor was supportive of self-testing, and agreed to provide test strips for the Coagucheck XS at my first meeting with him after surgery, so I bought a meter and was self-testing within about a month of surgery.

My INR had its moments in the early weeks after starting Warfarin, but settled down quite quickly, and I would say is now generally quite stable - I am around 98% in range over the last year, with minor tweaks to doses if a weekly test shows getting close to one end or the other. I wonder what factors people think affect stability of INR? Are our weight and exercise levels factors? For myself I am, unfortunately, obese, but as a diabetic on insulin I am aware that SOME body fat is helpful, since injected insulin uses body fat to disperse slowly and steadily into the blood stream. Not enough fat and you can be a 'brittle diabetic' - at risk of hypos etc through small changes in insulin dose. Too much fat and the insulin dispersal is interfered with. Might something similar happen with Warfarin?

What other factors affect your INR? After initially thinking alcohol had quite a significant effect, more recent tests I carried out as a result of a discussion on here have found this is not the case. For me, the biggest impact seems to be the onset of a common cold, which significantly depresses my INR. I know we are all different, and I am not advocating mass weight gain among the mechanical valve community! Do other overweight forumites find their INR quite stable?
 
Hi

LondonAndy;n866186 said:
...coincidentally the same month as our National Institute of Clinical Excellence published a report recommending self-testing as best practice for people with mechanical valves (results show a 42% reduction in thromboembolic events, and overall a 32% reduction in death through self-management - see https://www.nice.org.uk/guidance/dg14/documents/pointofcare-coagulometers-the-coaguchek-xs-system-and-the-inratio2-ptinr-monitor-diagnostics-assessment-report2)
hey, nice link ... adding that to my evernote :)


... Do other overweight forumites find their INR quite stable?

this is a question that is quite interesting, as Vitamin K is fat soluable and so it would make sense that helps to even things out. I can only think of one other person I know has great difficulty in INR control and he's very fit with a very low fat ratio. There could indeed be something in this!
 
LondonAndy;n866195 said:
I was amused at the report stating "32% reduction in death" - just a few more medical innovations and we will be immortal!
That will doubtless be a "relative" reduction. Just like with this example: if you have a 1 in a million chance of winning the lottery and that changes to a 2 in a million chance that means there's a 100% increased chance of winning :)

Here's the medical explanation of relative versus absolute risk reduction in treatments, medics love using relative risk as it's much more impressive, especially when writing up studies: http://www.nps.org.au/glossary/absolute-risk-reduction-arr
 
I've seen a few papers, and references to other papers, that say that self testers are in range more consistently than patients who don't self test. I think that the reality is that self testers are in range even more consistently than the studies report.

And I think that the most poorly run anticoagulation clinics, using the most outdated protocols as they relate to frequency of testing probably have the BEST rate of patients whose INRs are within range.

Here's why:

Anticoagulation clinics schedule repeat testing. If a patient's INR is 'consistent' or 'consistently in range,' these clinics often switch frequency of testing from twice month to monthly, to every other month, and sometimes to EVERY THREE MONTHS. The assumptions are that 1) if a patient's INR has been consistently in range the past few tests, nothing will change between testing, 2) if the patients INR is going to be stable between tests, it will save money to not have to repeat an unnecessary test 3) these overworked clinics have more important things to do than to counsel patients whose INRs are always in range and 4) if a patient doesn't return, the patient must have gone to another clinic, so he or she is removed from the database for non-compliance or because he or she 'dropped out' of the program. No follow-up on the patient's status is performed - he or she is just removed from the list of active patients.

What they seem to overlook is that 1) it only takes a week or so for a person with an INR below 2.0 to form and throw a clot (and possibly die), 2) although possibly not as likely, the damage from too HIGH an INR could be potentially life threatening and may not take very long to exhibit symptoms, and 3) if a person with either situation exhibits the symptoms (and doesn't die), the person will probably switch clinics or be unable to continue as an outpatient. There are many factors that can cause a person's INR to change rapidly. Diet is one, the use of antibiotics is another, even certain 'organic' supplements can cause changes in INR. Although these clinics are aware of this, they still seem, illogically, to be happy with monthly or even less frequent testing.

I'm a strong advocate for weekly self testing, although I don't always test this frequently. It's the only way to know, week to week, that my INR is in a safe range.

---

As far as 'used' meters are concerned, I don't think that I'd usually worry about the meter's lifespan. The CoaguChek XS is designed for use in doctor's offices, and also for self-testers. So are the others. These meters are designed with a lifespan of hundreds of tests.

Even if you test weekly, the number of tests you'll run in three years may still be fewer than the number of tests run in a clinic or doctor's office in a few days or weeks.

Many of the used meters probably had minimal use. Some meters may come from people who had them, but died of old age or other issues (and the heirs have no use for them, so they offer them for sale). Some may be medical 'surplus' - coming from clinics, doctor's offices, or hospitals that have replaced them with the same meter (but can no longer deduct the cost of the 'old' meter from its taxes) and sold them to re-marketers.

I've acquired most of my meters used -- I only got one direct from the manufacturer, but only because I implicated this manufacturer's defective meter as causing a TIA because of inaccurate test results.

If you buy a meter, it's good to ask for a right to return the meter (fifteen days or so), if it doesn't work. It's good to check the meter's results against a blood test. Realize that the meter and the blood draw will probably not agree - that's just the nature of the testing method. And, if you know someone with the same meter, perhaps comparing your results to the other meter would be of value.

Self-test. It could save your life...
 
Very good points and I agree 100%! It worries me a bit that my INR was below 2 for at least 1 week, but also luck in a way, as just before I dropped down they were talking about doing monthly testing. Imagine that! Going to monthly testing then my INR goes super low... Anyway, and as a novice who was guided by their advice I wasn't going to question them. I thought it was a good thing advancing to monthly testing! I know better now. Will keep going weekly until I get my home testing device. As you said, it could save my life!
 
Hi

Ryanvs;n866234 said:
%! It worries me a bit that my INR was below 2 for at least 1 week,

Don't get too worried about it. The results of the GELIA study suggest that INR like 1.7 is not dangerous for low risk valves like you have
 
Mine is an older generation, higher risk valve. Newer ones have less risk of clots.

In my case, I had a meter that told me 2.6, and I had a TIA. In the hospital, the INR was reportedly 1.6 or 1.7 -- low enough to produce the clot that gave me my TIA.

Personally, although I preach weekly testing, I don't always practice what I preach.

Years ago - 2006 - 2009, I didn't know about this forum. I wasn't clear on the importance of regular testing. Stupidly, I went for nearly three years without testing - but kept my dose where it was when I HAD been tested. I developed what appeared to be a 'wart' on my left cheek, next to my nose. It was too close to my eye to mess with. I had no doctors, but I still had a supply of warfarin.

When I was finally able to get a meter and self-test, I increased my dose - and the 'wart' went away. I'm convinced that, somehow, the clot(s) that may have come from my valve coalesced into the facial 'wart.' This small blockage kept the clot from advancing into my brain.

When I started testing, increased my dosage, and raised my INR, the 'wart' went away.

I have an idea why I was spared what could have been a fatal stroke - am convinced that clots WERE blocked at that time - and continue to be driven to see that people who need testing - regardless of financial means - CAN be tested.

As Pellicle said, with a newer valve, the risks of a sub-2.0 INR are lower than the risks for people with the earlier generation valves (well, he didn't say that, exactly), but a week below 2.0 probably isn't that big a deal. (However, there is STILL a lower limit for the newer valves, and this should be respected).
 
Protimenow;n866429 said:
(However, there is STILL a lower limit for the newer valves, and this should be respected).

and even I shoot for a mean of 2.5 and make effort to steer back if it dips below 2
 
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