'Coumadin Clinic?' Maddening

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Protimenow

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I called my PCP and asked for a standing order for a PT/INR blood draw. He claimed tto have issued the order. He also DEMANDED thatI go to a 'coumadin clinic.' At the clinic, according to the girl on the phone, they'll test my INR and tell me what dose to take.

I told her that I've been self-testing and self-managing for 11 years - and that the only reason I wanted blood draws was to check my meters.

These fools were insistent that I go to their 'clinic' for management. I don't know where the hell it is, or how much time I would waste going there and back (or how much money it costs this HMO to run extraneous tests), but at least I'll have another meter or blood draw to compare to mine.

BTW - I've been comparing my two meters - Coag-Sense and CoaguChek XS to each other, with daily tests (running me out of strips), and to the hospital's results, in an attempt to see where the results of the two meters diverge. I'll report on anything significant in a week or so. I might report it after another blood draw). This has nothing to do with a 'clinic' but I wanted to do an update somewhere.
 
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Protimenow

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I haven't lost any sleep over it. It was surprising to me how few people who take warfarin self-test, and how many fewer still, self-manage.

As I said in a different thread, my doctors, my phlebotomists, the nurses, and others were amazed that I self-test. They hadn't heard of this before. One phlebotomist asked if I had to draw blood to do the test. When I compared it to a blood glucose exam (small incision in fingertip, drop of blood put onto strip), the phlebotomist understood.

Doctors seem to think that a) warfarin management is something of a black art, only to be attended to by specialists or by THEM, b) that ALL patients are either too stupid or clumsy to take their own blood and c) nobody, other than them or specially trained people at the clinic could possibly manage their warfarin.

The PCP's insistence that I go to a 'coumadin clinic' (sounds like it's a clinic for sick coumadin) supports the previous paragraph.
 

LondonAndy

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I wonder how many other countries are like the US? Possibly quite widespread where healthcare is predominantly private?
 

Protimenow

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In the United States, I know of at least two 'services' that provide their clients with a monitor for home testing. The companies are Roche (which apparently always owns the meter, and provides testing supplies) and Alere (ditto). The client tests the INR and calls the results in to the company. (The new Roche Vantus might send results over the Internet - but I'm not sure about this). The services then send the results to the doctor. The services apparently get paid pretty handsomely for this, and I'm sure that the doctors' offices charge well for 'reading' the results and, perhaps, changing warfarin dosage.

LondonAndy - you would know better than I do about the British health care system - but I've heard of papers from the healthcare system (or somewhere) that states that weekly self-testing provides the longest period of in range INRs. To me, this suggests that there are a LOT of self-testers, and that the healthcare system probably provides meters and supplies to those on warfarin. But I could be wrong.

It would be interesting, as you've already said, to see how countries othet than the U.S. do it.
 

LondonAndy

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LondonAndy - you would know better than I do about the British health care system - but I've heard of papers from the healthcare system (or somewhere) that states that weekly self-testing provides the longest period of in range INRs. To me, this suggests that there are a LOT of self-testers, and that the healthcare system probably provides meters and supplies to those on warfarin. But I could be wrong.

It would be interesting, as you've already said, to see how countries other than the U.S. do it.
Well, self testing is increasingly encouraged here, for those capable, but my personal experience is that self managing is less so - not that I have discussed this with other Brits, and would be interested in their experience. So I self manage secretly I suppose, by testing weekly and adjusting my own dose, and email a reading to my clinic at frequencies that they specify and which vary depending on whether I am in range or not. Here is an example report*, showing my last few results and the interval of their requests. Our communication is via email. You will see that I am almost 93% in range according to this, but of course if I strayed out of range in between sending them a result and compensated, and this isn't shown. My spreadsheet shows the weekly tests are 86.6% in range (I start adjusting my dose a little as I get close to the therapeutic range limits). I think the paper you are remembering is this one, which was published by our 'National Institute of Clinical Excellence in September 2014.

I find my anticoagulation clinic very supportive, and should I be concerned I can contact them at any time.

* The date of my next test is closer than might be expected, but this is because I have just started a course of antibiotics for some cellulitis, and of course antibiotics will affect my INR level fairly significantly.
 

Protimenow

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Thanks, LondonAndy -- I've been using two strips daily (CoaguChek XS and Coag-Sense) for the past week, watching the results while I bring my INR from near 1.0 (for an Ablation procedure) to 2.4 )Coag-Sense) and 2.5 (CoaguChek XS) - practically identical. In the past, at INR above 2.5 or so, there was a difference of 1.0 or more. Maybe, after my recent arrhythmia nightmare, something has changed in my blood to bring the numbers closer together. I'll know in a few days.

Your interaction with the clinic sounds good. I hope my clinic experience (I probably can't avoid it) will go as smoothly. Perhaps if I don't come off as a know it all or smartass, things will go smoothly for me, too.
 

tom in MO

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I called my PCP and asked for a standing order for a PT/INR blood draw. He claimed tto have issued the order. He also DEMANDED thatI go to a 'coumadin clinic.' At the clinic, according to the girl on the phone, they'll test my INR and tell me what dose to take.

I told her that I've been self-testing and self-managing for 11 years - and that the only reason I wanted blood draws was to check my meters.

These fools were insistent that I go to their 'clinic' for management. I don't know where the hell it is, or how much time I would waste going there and back (or how much money it costs this HMO to run extraneous tests), but at least I'll have another meter or blood draw to compare to mine.

BTW - I've been comparing my two meters - Coag-Sense and CoaguChek XS to each other, with daily tests (running me out of strips), and to the hospital's results, in an attempt to see where the results of the two meters diverge. I'll report on anything significant in a week or so. I might report it after another blood draw). This has nothing to do with a 'clinic' but I wanted to do an update somewhere.
Maybe I am mistaken, but I believe you have reported in the past great disparity between your home testing values and the blood draws. It makes good clinical sense then for your provider to want a blood draw not home testing results. The blood draw results are the "gold standard" in INR testing; in meter validation the blood draw result is the reference value. I wouldn't say they are "fools" if they want you to measure your INR by the most accurate method.

Again, maybe I am mistaken, but I believe you have also reported significant swings in your INR. It makes good clinical sense then for your provider to want to manage your dose themselves and not have you self manage.

The overwhelming majority of people have no trouble doing home testing and home dosing. Your difficulties make you very very special. Thus it is to be expected that your health care providers want to be conservative.

For those concerned about the state of testing in the US, in my experience, home testing has been supported by Medicare, Medicaid and insurance companies for a number of years. Dosage adjustment by patient is not as common, but is allowed by insurance companies and individual practitioners. I don't know about Medicare or Medicaid.
 
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Protimenow

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Tom:

My doctor didn't want more blood draws -- I DID.

My INR has not been swinging - it's been well managed for the last 11 years. The only time I had a dip in my INR was if I had forgotten to take a dose, or had a WHOLE LOT OF GREENS. Other than that, slight changes to dose brought me back into range.

I'm currently testing daily - on the Coag-Sense and on the CoaguChek XS, to watch my INR come up into range (and maybe further). After my Ablation, my INR was about 1.2 or 1.3 in order to do the procedure with minimal bleeding risk. I've monitored the rise in INR.

The 'coumadin clinic' will be somewhat extraneous - they probably use a meter for testing, and I can compare their meter to mne - but don't expect to see much of a difference. This would only confirm the accuracy of my meter or theirs. I doubt that they do blood draws at this clinic. I'll find out.

I asked my PCP to issue a standing order at the lab for an INR test. I'll use this to compare to my two different meters.

As far as my 'fools' statement, the doctor has no idea HOW they test my INR in the clinic. They probably use a meter, rather than a blood draw, and it's foiolish to require me to go to a clinic to do a test that I can do at home - with the same meter as the one that they use. It's foolish to send a person (me) who h as been successfully monitoring and managing my INR for 11 years to a 'clinic' that would do the same thing. It's a waste of resources.

Yes, Medicare supports self-testing, and apparently can provide a meter and strips -- but I haven't found a doctor who knows about this, or who wants to learn more about it, and so far, the idea of self-testing (or Medicare providing a meter to Medicare recipients) is a total mystery to them. I've asked. There are no answers.
 

ScribeWithALancet

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Maybe I am mistaken, but I believe you have reported in the past great disparity between your home testing values and the blood draws. It makes good clinical sense then for your provider to want a blood draw not home testing results. The blood draw results are the "gold standard" in INR testing; in meter validation the blood draw result is the reference value. I wouldn't say they are "fools" if they want you to measure your INR by the most accurate method.

Again, maybe I am mistaken, but I believe you have also reported significant swings in your INR. It makes good clinical sense then for your provider to want to manage your dose themselves and not have you self manage.

The overwhelming majority of people have no trouble doing home testing and home dosing. Your difficulties make you very very special. Thus it is to be expected that your health care providers want to be conservative.

For those concerned about the state of testing in the US, in my experience, home testing has been supported by Medicare, Medicaid and insurance companies for a number of years. Dosage adjustment by patient is not as common, but is allowed by insurance companies and individual practitioners. I don't know about Medicare or Medicaid.
Tom,
You said "The blood draw results are the "gold standard" in INR testing; in meter validation the blood draw result is the reference value."
Unfortunately, the "gold standard" has mixed results. Roche did a study while validating their meter where they demonstrated that Lab test devices varied by +-0.5 in INR. This is the same as the average variation between INR test meters and the lab. By doing statistical regression, and if both machines have been calibrated against the ISI standard, you can match one meter to one lab within +-0.2 per Dr. Johnson of the University of Utah. However, you have to make sure that the reagents used on both the meter test strip and for the lab device have not changed and if they have changed, that recalibration of the reagent has been done. Similarly, you have to make sure the lab has not changed their machine and that they have not sent the sample out to a different machine. This is all doable. I have been lucky, my test machine marches to my lab machine very closely on the occasions when I go in for a lab test. (I am avoiding them for the duration as I had a pulmonary immune system issue a while back that leaves me extremely vulnerable to pulmonary illnesses). However, this closeness is probably because my lab is paranoid about calibrating all their test equipment. Unless you can use the same lab with the same equipment and reagent, your meter is likely to give you more consisten results as it will not swing by +-0.5 between tests as different lab devices do in the real world.

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mecretired

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I self test weekly and have for about 8 years. Since turning 65 (4 yrs ago) Medicare covers testing thru Roche and my supplement pays the copay. Roche charges $250 per month (this includes use of the meter and all supplies for weekly testing) and my Coumadin Clinic charges $20/mo. I test weekly and report the results on the Roche web site. Somehow they pass the info on to my Coumadin clinic. If my inr is out of range I receive a phone call. However——since my Coumadin clinic tends to over react and likes me to split pills, i I tend to just lie and tell them I’m in range and manage it myself. I know if I’ve eaten or drank something that caused it to be off. I know everyone reacts a little differently to Coumadin, vitamin k foods, alcohol, medications etc. So I usually just make my own adjustments. Coumadin clinic is happy and I’m happy. They stressed me so much for years by refusing to give me 1 mg pills and expecting me to split pills and take different amounts on different days. I now have 5mg and 1mg pills and feel lucky to have those.
 

Protimenow

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So - insurance pays $270 a month for something you can do at home. Roche charges $250 for a meter that they loan you and $20 worth of strips each month. It sounds like quite a racket. I wonder if Payday loans - with ridiculous amounts or interest on any loan - are any less greedy.

If your 'coumadin clinic' is happy with monthly testing - they're not really doing their job. They should have you test weekly - and then they can charge your insurance $60 or $80 a month. The poor people at the clinic may have to check their outdated protocols to advise you every week.

You're smart to also self-test. Let the clinic think that it's doing such a great job, but self-manage if you're comfortable doing it.

---

Scribe -- I appreciate your comments about 'gold standard' INR testing. When I was in the hospital, I'm assuming that they calibrated their machine to the reagent - and did this very carefully - and that the same machine was used to test all the blood that the phlebotomists sent them. OTOH - the INR value is listed to tenths of a hundred - other labs give a 'finer' answer. It makes me wonder if they're taking a drop from the tube of blood and using a meter to get results.

I'm not so sure about the other lab -- it's a large corporation that sends the samples obtained from the many clinics in the area, transports them to a central facility for testing, and quite possibly has multiple machines doing the same type of test. In this case, who knows if the macines are all calibrated and tested against the reagent or if a slightly different result can be obtained from the different machines? These may not be particularly significant, but according to your comments, may have an impact on using the regression that you mention for predicting the accuracy of a test.

The meter manufacturers swear by the accuracy of tests made using their meters. They've bet their businesses on this. A large company like Roche can survive strip recalls, and perhaps pulling their meter off the market (It's not going to happen), it may be able to handle lawsuits against them if errors somehow hurt someone (but there's no reason to assume either of this happening with a well known meter, millions of tests run using that meter and few, if any, negative issues. A smaller meter manuracturer may be more challenged if errors occur.

That said, all meter manufacturers carefully calibrate their strips to the reagent, and include some kind of correction to make the results accurate.

In spite of this, in my own personal experience, although it would be expected that the two meters that I use - Coag-Sense and CoaguChek XS should have results that are close to the other meter, and to the labs. They don't. Both companies stand by the accuracy of their meters. I'm testing to see how and at what INR they start to vary and will probably have a blood draw to see which (if eiher) is closest to the lab.
 

dick0236

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So - insurance pays $270 a month for something you can do at home. Roche charges $250 for a meter that they loan you and $20 worth of strips each month. It sounds like quite a racket.
On my plan with Roche (Coaguchek Patient Services) my insurance (Humana Medicare Advantage) only pays Roche $43.98 per month for weekly testing ($11/test). I pay a copay of $11 for the 4 tests......Roche writes off the balance of $195.02. I have long wondered why health care providers bill these outlandish fees (Roche does bill $250/per 4 tests) and then accept much lower contract fees with insurance providers.

My $11 copay, $2.75/test, is easily the most economical way for me to manage my INR.......given that Roche provides all needed materials (meter, lancets, strips and the security of knowing if the meter breaks they replace it at no cost to me......plus I probably save a gallon of gas (+/- $2.75) by not driving to the lab.......plus I don't have to put my pants on for the test, I do it every Wed. when I first get outa bed.:giggle:
 

pellicle

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I have long wondered why health care providers bill these outlandish fees (Roche does bill $250/per 4 tests) and then accept much lower contract fees with insurance providers.
its a good question. Australia is a little bit of a grey area where you either go to the private (or state government) labs for a vein draw or go it alone. They specifically do not support coagucheck tests (who knows what crazy ideas people might get if they knew it was available).


My $11 copay, $2.75/test, is easily the most economical way for me to manage my INR.......given that Roche provides all needed materials (meter, lancets, strips and the security of knowing if the meter breaks they replace it at no cost to me......plus I probably save a gallon of gas (+/- $2.75) by not driving to the lab.......plus I don't have to put my pants on for the test, I do it every Wed. when I first get outa bed.:giggle:
sound arguments, but I normally wear pants in winter even to bed, albeit not ones I'd wear outside the house ;-)
 

mecretired

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So - insurance pays $270 a month for something you can do at home. Roche charges $250 for a meter that they loan you and $20 worth of strips each month. It sounds like quite a racket. I wonder if Payday loans - with ridiculous amounts or interest on any loan - are any less greedy.

If your 'coumadin clinic' is happy with monthly testing - they're not really doing their job. They should have you test weekly - and then they can charge your insurance $60 or $80 a month. The poor people at the clinic may have to check their outdated protocols to advise you every week.

You're smart to also self-test. Let the clinic think that it's doing such a great job, but self-manage if you're comfortable doing it.

---

Scribe -- I appreciate your comments about 'gold standard' INR testing. When I was in the hospital, I'm assuming that they calibrated their machine to the reagent - and did this very carefully - and that the same machine was used to test all the blood that the phlebotomists sent them. OTOH - the INR value is listed to tenths of a hundred - other labs give a 'finer' answer. It makes me wonder if they're taking a drop from the tube of blood and using a meter to get results.

I'm not so sure about the other lab -- it's a large corporation that sends the samples obtained from the many clinics in the area, transports them to a central facility for testing, and quite possibly has multiple machines doing the same type of test. In this case, who knows if the macines are all calibrated and tested against the reagent or if a slightly different result can be obtained from the different machines? These may not be particularly significant, but according to your comments, may have an impact on using the regression that you mention for predicting the accuracy of a test.

The meter manufacturers swear by the accuracy of tests made using their meters. They've bet their businesses on this. A large company like Roche can survive strip recalls, and perhaps pulling their meter off the market (It's not going to happen), it may be able to handle lawsuits against them if errors somehow hurt someone (but there's no reason to assume either of this happening with a well known meter, millions of tests run using that meter and few, if any, negative issues. A smaller meter manuracturer may be more challenged if errors occur.

That said, all meter manufacturers carefully calibrate their strips to the reagent, and include some kind of correction to make the results accurate.

In spite of this, in my own personal experience, although it would be expected that the two meters that I use - Coag-Sense and CoaguChek XS should have results that are close to the other meter, and to the labs. They don't. Both companies stand by the accuracy of their meters. I'm testing to see how and at what INR they start to vary and will probably have a blood draw to see which (if eiher) is closest to the lab.
 

mecretired

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I do test weekly and have for years even though my Coumadin Clinic recommendEd monthly. (I had purchased my own Coaguchek and strips on eBay and did monthly testing at local lab prior to Medicare.) We finally came to an “understanding” and they approved weekly. So Medicare covers weekly. The $270 charge is per month for weekly testing with all supplies. Of course Medicare does not pay that as they have negotiated a much smaller amount. An individual would have to pay that amount. Roche sends as many strips and lancets as I need. So this works for me.
 

ScribeWithALancet

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Well, self testing is increasingly encouraged here, for those capable, but my personal experience is that self managing is less so - not that I have discussed this with other Brits, and would be interested in their experience. So I self manage secretly I suppose, by testing weekly and adjusting my own dose, and email a reading to my clinic at frequencies that they specify and which vary depending on whether I am in range or not. Here is an example report*, showing my last few results and the interval of their requests. Our communication is via email. You will see that I am almost 93% in range according to this, but of course if I strayed out of range in between sending them a result and compensated, and this isn't shown. My spreadsheet shows the weekly tests are 86.6% in range (I start adjusting my dose a little as I get close to the therapeutic range limits). I think the paper you are remembering is this one, which was published by our 'National Institute of Clinical Excellence in September 2014.

I find my anticoagulation clinic very supportive, and should I be concerned I can contact them at any time.

* The date of my next test is closer than might be expected, but this is because I have just started a course of antibiotics for some cellulitis, and of course antibiotics will affect my INR level fairly significantly.
LondonAndy,
I looked at your report and modified it for my self management. I told my clinic that my doctor had forbidden me to come to the lab for the duration of the epidemic and for some time thereafter. I had a condition called pulmonary sarcoidosis that was essentially an immune system dysfunction in the lung that left me a magnet for airborne pulmonary bugs. Your report was excellent.

I am changing it to reflect my last 7 Coag-Sense readings and corresponding correlation predicted health plan Laboratory readings. I have stayed within my Therapeutic Range (2.5 to 3.5) since beginning my current dosage. I mention but do not document that I have been in my Safe Range (2.0 to 4.0) since January. I define the Safe Range as that presented in the U shaped graph that Pellicle showed a couple months ago that shows that for people with artificial heart valves the number of incidents increases almost verticall outside of that range, is almost flat and almost zero between 2.5 and 3.5 and increases very gently from 2.5 down to 2.0 and from 3.5 to 4.0. Thus, the real danger zone is below 2.0 and above 4.0.

Thank you for posting it. I will have to play with it to make it look as "professional" as possible before sending it in next week. I will also have to add a bunch of explanatory definitions to a page 2 in case someone other then my regular AntiCoagulation Pharmacist reads it. However, it already makes things much clearer then my narrative text did even though they say pretty much the same thing.

Do you know of any Excel or LibreOffice spreadsheet equations that can automatically compute therapeutic time in range (TTR) without using macros?

Walk in His Peace, and 6 feet apart : - )
Scribe With a Lancet
 

LondonAndy

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Very glad it was useful, Scribe With A Lancet! If a Word version of the report is helpful, send me a private message and I will email it.
 

Protimenow

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I was called by my HMO's anticoagulation clinic on Thursday (the day before yesterday). They gave me the option to opt out, but I'm interested in comparing the results of THEIR CoaguChek XS and my XS and Coag-Sense meters. I'm also interested in their technique -- they don't have people in their clinic - instead, you sit in the parking lot, drive up to them (or they come to you), they incise your finger, then apparently touch your finger to the strip or use a capillary tube to take the blood, then transfer it onto the strip. I wouldn't be surprised if they use an alcohol wipe before taking the blood - and don't let it dry before making the incision.

They apparently send the result to my PPO (who probably has no clue about how to manage INR). I asked about how often they test and was told that for some patients they can go 6 to 8 WEEKS between tests.

This ignorance of best practices doesn't surprise me, but DOES annoy me. I'm glad that Ihave my own meters and do my own management.

(Maybe I can talk them out of a box or two of strips).
 

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