Cardiologist Against INR Meters

[angietdrake]

Just wanted to find out if anyone else out there has a Cardiologist that refuses to let them augment regular lab checks with a home INR meter. I am 4 months post surgery and making an excellent recovery, except for one thing - my weekly INR check values have been swinging wildly from one extreme to the other. My doctor has recommended a range of 2.5 to 3.5, but over the last 4 months, I've only had 2 weekly checks within this range. All other checks have been above or below the recommended range.

I directly asked my Cardiologist for a prescription for an INR meter so that I could (possibly!) get my medical insurance to cover it for me before the 1st of the year, when our annual deductible starts all over again. But she refused my request, stating that it was against "hospital protocol" to prescribe an INR meter for anyone that wasn't already stabilized. To which my husband responded that it seemed like their "protocol" was missing at least half the utility that a meter like this could provide.

After thinking about it awhile, I believe she thinks I will stop going to my weekly lab checks if I can do the testing at home. I tried to reassure her that this was not the case, but that my husband and I simply wanted to plot my daily INR values against a Food Log to see what it was in my diet that is causing such wild fluctuations in my weekly INR checks. She stated that if we wanted more data to compare with my Food Log, she would order more frequent lab checks. Unfortunately, the one lab clinic that is close to where I live is only open Tue. and Wed. of every week. To get more lab testing, I'd have to drive 25 miles round trip for any other day of the week.

So, if anyone out there has had a similar experience with their Cardiologist, I'd sure like to hear from you. In particular, how did you get your situation resolved?

 

[pellicle]

seems to be a problem that is unique (in the developed world) to the USA

My view is (and I'm not American) to just grab one off eBay in good order (and you do find them) and buy the strips and just test yourself anyway. As you say it can be annoying an onerous to go to labs.

It seems quite anachronistic to me to not encourage self testing, I mean imagine telling a diabetic they had to get a blood draw? If they screw up their dose of insulin its equally problematic (possibly even fatal). Perhaps you could take that approach (comparing to a diabetic) with your cardiologist?

Anyway when you do get one, try reading the threads here on testing, as some people find getting a sample frustrating at first. If you get a used machine (often unused because the elderly patient it was bought for never used it) make sure you get a current model that has strips available for it. For instance I use a Coaguchek XS and its important to get the "XS" model as there was an earlier model which is no longer supported with strips.

Best Wishes


PS you say:

but that my husband and I simply wanted to plot my daily INR values against a Food Log to see what it was in my diet that is causing such wild fluctuations in my weekly INR checks.

I'd agree you do that you will need daily measurements as you will just not see the fluctuations when measuring weekly. If you have 'wild fluctuations to sort out its good to see. I measure weekly and I'm totally certain that what I ate 4 days ago has no effect on my INR now. There is an excellent thread to read on that here:
http://www.valvereplacement.org/forums/showthread.php?42132-NovembINR&p=544019#post544019

may I ask, what is wild? This for instance is a recent graph of my INR

and I do not think these are wild fluctuations (although some may) as I've seen users with greater variation.

Also, its common that your INR will vary more in the earlier days post op than (say) a year later.

 

[AZ Don]

There was a Mayo clinic presentation that spoke to the differences in outcomes of mechanical vs. biological valves. Probably the most compelling point in the presentation is the improvement in outcomes for those that regularly self test. You could research the evidence and bring it to your Cardiologist and try to persuade her, you could ask another Dr., but if I were you I would follow Pellicle's advise and just buy one yourself if you can. In any case I would pursue this until you can self test.

 

[pellicle]

AZDon, good idea
here is a research starter for you

http://circ.ahajournals.org/content/126/5/e52.full

A review of self-testing and self-dosing studies found several potential benefits.2 In addition to the ease of testing at home or while traveling, self-testing reduced the stress of management and improved quality of life. The review also found a 26% lower risk of death and a 42% lower rate of major blood clotting events.

http://www.stoptheclot.org/news/article360.htm

Jack Ansell MD, Chair of National Blood Clot Alliance (NBCA) Medical & Scientific Advisory Board is a dedicated proponent of INR patient self-testing or self-management to the extent that he re-titled his presentation at the Anticoagulation Forum in Phoenix, AZ to reflect his vision of the changes or progression he foresees in anticoagulation management.

He called his talk, “The Patient as Anticoagulation Specialist of the Future,” and he suggested that the future is now.


Data show that patients do better when they self-test/self-manage and adjust doses of their blood thinner as needed.
Dr. Ansell believes that the current available technology makes the patient as the orchestrator of his or her anticoagulation an ultimate goal in healthcare

http://www.medscape.com/viewarticle/802092

A recent study published in the Lancet reports a 50% reduction in thromboembolic events among patients who self-monitor their INR and self-manage their warfarin dosing. Why aren't these practices more common?

http://www.ncbi.nlm.nih.gov/pubmed/15638860

Patients were randomized to weekly self-testing or continuing 4-weekly hospital laboratory monitoring of INR. Comparison of INRs (n = 234) showed no significant differences between the CoaguChek (median INR 3.02) and laboratory testing (median INR 3.07). There was excellent correlation between the two methods (r = 0.95), with 85% of CoaguChek results within 0.5 INR units of the laboratory method. On four occasions, differences of >1 unit INR were obtained, but in each case the patient's anticoagulation was unstable (INR >4.5 by both methods) and the differences in INR would not have altered patient management. 87% of patients found self-testing straightforward, 87% were confident in the result they obtained and 77% preferred self-testing. We conclude that PST is a reliable alternative to hospital clinic attendance and is acceptable to the majority of suitably trained patients

one more
http://www.anticoagulationeurope.org/files/files/booklets/Ireland self-testing.pdf

There have been several trials that have shown benefits from self- testing compared to conventional management.
The importance of good quality anticoagulation control cannot be over emphasised, as it has been shown that poor control, with a high percentage of INR’s outside the therapeutic range is a major independent risk factor for reduced long-term survival, particularly after valve replacement.

and of course wikipedia...
http://en.wikipedia.org/wiki/INR_self-monitoring

 

[dick0236]

So, if anyone out there has had a similar experience with their Cardiologist, I'd sure like to hear from you. In particular, how did you get your situation resolved?

I have had a similar experience with Cardios and GP's in Kentucky. I finally went to ebay and bought a meter($700) and strips($4) without a prescription. I self test weekly and go to my GP's lab for monthly checks. I use the lab tests to validate my "at home" tests. You may have difficulty getting insurance to cover both lab AND self-testing even if your doctor approved.

PS: I have never been able to use a diet log or diet history to figure out INR swings. I just try to be reasonably consistent with my diet and try to include some greens whenever possible. I make small changes when adjusting warfarin to keep from starting a "yo-yoing" effect. Any INR within, or close to, my range(2.5-3.5) is fine with me. A good approach to INR management is.....dose the diet and do not diet the dose. After a little while, INR management is a "piece of cake".

 

[newmitral]

Just wanted to find out if anyone else out there has a Cardiologist that refuses to let them augment regular lab checks with a home INR meter. .....

So, if anyone out there has had a similar experience with their Cardiologist, I'd sure like to hear from you. In particular, how did you get your situation resolved?

Hello angietdrake,

Although I did have an INR home-test meter prescribed by my doctor through my insurance I just returned it.

Don't get me wrong, I think home INR testing is the best thing since sliced bread for us valvers, but the economics strongly favor buying your own meter and home testing outside of, and in addition to, testing through your insurance.

The home testing service only leases you the meter through insurance, for about $200 a month negotiated insurance "reduced" rates. Typically, after a few months of that charge hitting your insurance deductible, it is much cheaper to buy your own meter and strips, which is what I did.

For a while, I tested using my own meter in parallel with lab blood-draw INR tests, and the insurance provided meter, so I was confident that my ebay purchased meter was giving me accurate test results before returning the "official" meter to the insurance home-test company. Although I returned my insurance provided meter, I am continuing to test weekly with my own meter. My doctor is in full agreement with my decision and I just fax him my weekly home-test INR result summary once a month.

I am strongly in favor of home INR testing, but the insurance costs are so badly skewed, that it is much more economical to buy your own home test meter and strips and let the insurance continue to pay for the monthly (or whatever your doctor prescribes) lab tests. You can then test at home on your own nickle (actually about $5) as often as you see fit.

So, before you spend a lot of time and effort trying to get your doctor to prescribe a meter, you might want to check out the costs through your insurance plan. It might be much cheaper for you to buy your own meter and do your home-testing independent of your insurance.

Good luck with whatever you end up doing.

 

[tom in MO]

From the little i've gathered, most doctors don't want home testing until about the forth month. I got my home tester in the fifth month. Couldn't find out why though. Some people have had cardios that did not really support home testing, nobody really said why. Ask your cardio more questions.

Although food logs for warfarin users are touted in older literature, they are not generally used now. Warfarin and inr changes take days, thats why testing every day is not useful, so it is hard, or not feasible, to establish a casual relationship with a food log.

 

[dwhist]

First, I was told I had to wait 3 months until my insurance would cover the meter. I think I was pretty stable after 3 months. Cardiologist was happy to give me prescription for the meter. He is part of a large group of cardiologists in the area and they have 2 people, who are great, that work the Coumadin clinic. Whether it is blood drawn or the meter reading emailed to meter company n and forwarded to them, they call and go over any changes. They have told me that in Europe people do the adjusting on their own. I am at the point where I know exactly what change to make. I am in a range of 30mg to 35 mg a week and make very small changes every few weeks.

After 2 years renting the device, I am calling tomorrow to see about returning it as the deductible this year is a killer. For the deductible I can buy my own on ebay. So unless they give the meter to me for free or they agree to accept what insurance company gives them, I am planning on returning it and going to ebay. Will do the monthly draws.

I do have a father who had valve replaced 15 years ago that just does monthly testing and we both take the same amount of medicine. So, it should work out.

If doc will not work with you, I would look at getting a new one on ebay and doing your own. Note the first few times you use it, drawing the blood can be an issue. Many posts here on best way to do it. All you have to do is search or ask and you will get the info you need.

 

[chaconne]

I've had a similar experience as you except that instead of my cardiologist being against it, my INR clinic is. My cardio is supportive but he can't do much since the clinic decides on matters like this. I ended up buying an INRatio2 meter on Ebay for $350. It came with a crack in the strip foundation but doesn't seem to affect the readings. So far, 7 comparisons with lab draws have been within +- 0.1. Even though I still have regular lab draws, I find it comforting to know I have a meter that I could use if I didn't have access to a lab and needed to know, or like you plan to do - find out what affects INR. Besides, the lab has me testing only every 2 months when they consider me "stable".

 

[charlieecho]

I got a similar reaction from my Dr. Angie. They just didn't have any patient that was currently doing in home monitoring according to them. They didn't really fuss about it they just acted like they knew nothing of them. So what we did was bring it with me the next 2 or 3 times I checked my INR there at their lab so we could compare the two. There was some slight variation of course but nothing that far off. I now test once a month and just text the nurse my results. Much easier then taking 1-2 hours of my time during the day to go to a lab to draw blood, and it doesn't hurt as much either lol.

EDIT:
Remember it's YOUR choice on what you do. They can't make you do anything. If it doesn't make financial sense to go to a lab then do a home monitoring system. There is absolutely no reason why lab testing is superior to a home monitoring kit when testing for INR.

 

[Lynlw]

Just wanted to find out if anyone else out there has a Cardiologist that refuses to let them augment regular lab checks with a home INR meter. I am 4 months post surgery and making an excellent recovery, except for one thing - my weekly INR check values have been swinging wildly from one extreme to the other. My doctor has recommended a range of 2.5 to 3.5, but over the last 4 months, I've only had 2 weekly checks within this range. All other checks have been above or below the recommended range.

I directly asked my Cardiologist for a prescription for an INR meter so that I could (possibly!) get my medical insurance to cover it for me before the 1st of the year, when our annual deductible starts all over again. But she refused my request, stating that it was against "hospital protocol" to prescribe an INR meter for anyone that wasn't already stabilized. To which my husband responded that it seemed like their "protocol" was missing at least half the utility that a meter like this could provide.

After thinking about it awhile, I believe she thinks I will stop going to my weekly lab checks if I can do the testing at home. I tried to reassure her that this was not the case, but that my husband and I simply wanted to plot my daily INR values against a Food Log to see what it was in my diet that is causing such wild fluctuations in my weekly INR checks. She stated that if we wanted more data to compare with my Food Log, she would order more frequent lab checks. Unfortunately, the one lab clinic that is close to where I live is only open Tue. and Wed. of every week. To get more lab testing, I'd have to drive 25 miles round trip for any other day of the week.

So, if anyone out there has had a similar experience with their Cardiologist, I'd sure like to hear from you. In particular, how did you get your situation resolved?

Am I reading this correctly your doctor is NOT against home testing, but wants you to be stable a couple times before they will give you a prescription for one? If that is the case it stinks, and as you said it probably be easier to get/stay in range if you could test a couple times a week until you are "stable". So kind of a catch 22, but I think that is pretty common to either wait a few months and/or the persons INR is "stable"
So I could be wrong but it seems they understand the benefits of home testing, so you dont really have to take all the articles about the benefits, like you would if your doctor was against home testing in general
like in some cases.

When you say you are swinging wildly, like others asked what have your INRs been, are you above below 2-4 or just out of your "range" of 2.5-3.5 IF your usually inside the 2-4 range I would ask exactly what they want to be considered "stable", since chances are your within the acceptable standard of deviation for the test. Also are they changing your dose often if you are a little above or below the range? Or just making small changes if any?

Now IF you are going outside that (2-4ish ) range since it has been 4 months, even tho it isn't the most helpful option maybe doing a couple weeks w/ the tues -thurs lab so you can see if you see anyhing with your food log comparison. At least if you hope to have insurance cover the machine and supplies and not pay you of pocket. Altho there is a pretty good chance it isnt something you are eating and not eating that is making a difference, you really have to eat a ton of most things high in vit k to make any difference, which is one of the reasons they say to "dose the diet and dont diet the dose"

Hopefully things go more stable soon and you can start home tesing.

 

[Protimenow]

A few things:

First -- Charlecho -- if you have a machine, you SHOULD be testing WEEKLY. If your INR drops below range between tests, you can have a stroke in less than a week below range -- testing every month won't reveal this problem. It's worth your well being to be testing more often than once a month. (I haven't always followed this advice, but kick myself in the butt when I haven't).

There are apparently some insurers who won't approve a meter for 90 days following surgery. I'm not sure of the reasons, but I've seen some on this forum complaining about it.

As others have noted, I wouldn't be particularly concerned about a food diary. At one time there was a now-disproven fear that ANY Vitamin K will bring the INR into dangerous levels, and there was even a 'Coumadin Cookbook' that avoided Vitamin K in foods. Our bodies NEED Vitamin K for things in addition to clotting, and it's been shown that Vitamin K, in small amounts, can actually be helpful in stabilizing INR.

I've bought my meters on eBay (with the exception of an InRatio 2 that Alere sent me after I had a TIA and attributed it to inflated values that I got from an InRatio), and I've been generally satisfied with self-testing. My most trusted meter, after significant testing and comparisons to blood draws, is the Coag-Sense, with CoaguChek XS taking second place.

I have monthly blood draws and usually test every week, and certainly shortly before or after my blood draws. My Anticoagulation Clinic now only wants to see me every three months. They used to oppose home testing on meters that they 'can't calibrate,' but gave up.

Before I was enrolled in the anticoagulation clinic, I was able to get prescriptions for warfarin from my doctor, who I showed YEARS of records on test date, machine, dose, result, and any factors that may have been related to any changes in INR. Keeping your own INR Diary is useful as a historical record, and also helpful for tracking your values and the effect of any (minor) changes you may make to your dosing.

Self-testing is empowering. Occasional comparison to lab values is useful (though not all labe are necessarily all that accurate, either). It may make sense to buy your own meters and supplies, so you can stay on top of your INR and not be subject to the crazy monthly or every-other-month schedule that some doctors or clinics may still think are appropriate.

 

[angietdrake]

Just wanted to say "Thanks" to all respondents who took the time to share their thoughts and experiences. My husband and I appreciated the information. Over the last four months, I've only had 3 weekly lab checks within the 2.5 - 3.5 range. Other readings have ranged from 1.8 to 4.5. My doctor keeps chasing my INR level by repeatedly adjusting my daily dose of Jantoven, up and down, frequently using the same dosages that produce markedly different results, but won't look at factors in my diet. It is crystal clear by now that my body reacts much faster to dietary changes than to dose changes. This is why my husband is now tracking what I eat for each meal in between INR checks and plotting vit.-K content against INR levels. Given enough time and data, he thinks we will find a correlation. But, it sure would have helped the process to have INR measurements each day to plot the Vit.-K data against. Just can't figure out why my doctor refuses to assist us in this endeavor.

 

[Protimenow]

It looks like your doctor has you on what is often referred to as a 'Roller Coaster', changing the doses frequently, while not giving a stable dose enough time to really demonstrate its effect on your INR. Changes should be slight - and infrequent. If you try to maintain a fairly consistent diet - don't sweat the Vitamin K too much - but NOT change the dose more often than once a week, and only slightly at that time (unless your INR is REALLY out of range), you and your (shall I suggest it?- ignorant) doctor may help you to find the dose that works for you. As long as your INR is above the minimum - in the 2+ range, you are probbly fairly safe -- if it heads into the 4s, some leafy greens should help to bring it down, but speaking from experience, I'd rather risk a little extra bruising than I would a stroke.

If you can, talk your doctor into being GRADUAL with the changes, and waiting a week between any major changes - unless your INR is below 2. This should help your INR to stabilize and help you to find the sweet spot. There may still be necessary tweaking and occasional minor changes, but no roller coaster like the one you are on now.

 

[big_L]

After my recent conversations with Roche, I'm sticking with my eBay meter and buying the strips myself. My insurance won't pay for both home testing and lab testing. Further, Roche won't "let you' change your test frequency without a new prescription from your cardio. No thank you. I'm sticking with the lab testing at the frequency that my coumadin clinic orders and supplanting with with my own home testing. It's cheaper to buy the strips myself than pay all the deductibles etc. if the insurance covers it.

 

[angietdrake]

Thank you all for your replies. I guess, I have to go to eBay and see what I can find.

 

[Gail in Ca]

I'm surprised at your cardio's opinion. My surgeon and cardio both suggested I get my own meter after my mechanical valve surgery in '00!
I have had 3 types and I like the latest one I got, the coaguchek xs. My insurance paid all but $50 for the meter. Now, with my newest ppo insurance, my strips would cost too much, so I got the last batch on ebay for $225/48 strips. I rarely test at the lab anymore. Will your pcp give you a rx for a meter? Or does it have to come from the cardiologist? Maybe your surgeon would give you a medically necessary rx for a meter. If you do get your own meter and strips be sure to be aware of the expiration date of the strips, so you will use them before they expire! I find I like having more strips than the insurance will pay for (usually only 12 strips or 90 day supply).
You never know when you will be needing to test more than once a week.

 

[Freddie]

I think monitoring your "k" intake is going to drive you crazy, it didn't work well for me.

I bet after 6 months everything will work itself out, cause I too had a heck of a time trying to get my INR steady within the sweet spot. You may want to approach your Cardio or doctor again after a year.

That being said.................
your Cardio doesn't like home monitoring, but your doctor does? I had the reverse effect.

When I decided to go head-to-head with my doctor who was against home monitoring, I brought copies of mega information from the internet and presented all of it to my doctor. Although not pleased with the all the information I had complied from some awesome members from here, my doctor did agree to look at them after stating; 'even though it had been said/written that home monitors were not reliable and were often reading an higher INR' I responded; "take a closer look at the Mayo Clinic (I think) the New York Times and the paper from Toronto General"; one of those three names raised an eyebrow.

In my case all of this didn't help, but it's worth a try. If anything it will show the doctor that you're educated with this INR stuff and you know what you're talking about.
For me, in the end my Cardio was more than happy to give me a prescription for what I needed with no questions asked......I just showed him the pamphlet, maybe your doctor will do the same? Oh and I also got a little more respect from my doctor.

Good Luck

 

[angietdrake]

Thanks for sharing your experience with us! When my cardiologist refused to prescribe an INR meter, my husband asked to put a Statement of Patient & Family concerns in my medical record to document our reasons for asking for a meter. The cardiologist somehow interpreted our "concerns" as a threat and has refused all our attempts to clarify her misunderstanding. So now, we have to find a new cardiologist for me! In the meantime, my husband has used an Excel spreadsheet to closely track the correlation between the vit-K content of what I eat, and my weekly INR lab check reports. After about 4 weeks of tracking and analyzing on our own, I think we are beginning to get a handle on precisely what it is in my diet that causes such wild swings up and down on my weekly lab checks. Too bad we don't have a cardiologist that we can share the data with.

 

[clay_from_nj]

After about 4 weeks of tracking and analyzing on our own, I think we are beginning to get a handle on precisely what it is in my diet that causes such wild swings up and down on my weekly lab checks..

Would you mind sharing with us just what that is?