Self-monitoring INR from the start

[Protimenow]

Hi Amy, if you dont have something like a phone app to record your results I can recommend an app called INRlog created by a NZ haemotologist, its really simple for daily reminders and gives you a couple of graphs as well, you can enter your INR results each test-
View attachment 887748View attachment 887749

I'll bet this is an app for the iPhone.

There's nothing like it at the Google PlayStore.
I'll probably just stick with my spreadsheet.

 

[Protimenow]

No the way I did it is probably not very scientific. I checked it at home prior to going up to get it checked. I did check it on the opposite hand 1-2 hours prior to the check at the docs. The nurse always does it at the office.

1-2 hours between self test and lab draw should make no detectable difference.

 

[Amy]

Hey guys,

Thanks so much for all the information!!! It’s so good to know there are people out there who know what they’re doing and can help.

I tried calling around to find a new pcp/anticoagulation clinic today... The nurse practitioner at the place closest to my town was so scandalized at the suggestion of self-monitoring one’s INR, lol... She said the ins and outs of managing warfarin doses was so complicated, if you tried to do it on your own, you’d end up in the emergency room. And so they do not allow their patients to self-manage.

Can you believe this? I mean, I couldn’t make this sh*# up if I tried.

I should’ve said, “But all YOU do to mitigate that complexity is look at a simple algorithm, right?...” lol

 

[Chuck C]

I’m not feeling great about coming home from surgery, still likely unstable, and having to rely on people who may not know what they’re doing, to keep me in range

I feel the exact same way Amy.
I have been self testing now since day 19 of recovery and am so glad that I am now in control of staying in range.
You may have read my story on the other thread, but I will recap and give an update.

For me, it did not go so well relying on other people to keep me in range. A number of people who should have known better, did not notice that I was on amiodarone, which had the effect of almost doubling the potency of warfarin at the dose of amiodarone I was at. It was missed by the nurse practitioner who prescribed both meds, missed by the pharmacist and missed by the Coumadin Clinic.

Had I been prepared ahead of time with my own self monitoring device, I would not have gotten into the trouble that I did, as I would have tested daily upon my release. However, I was at the mercy of others in this regard.

Tested Monday 3/29 at hospital, day of release - INR= 3.1. I had shown very stable INR the past 4 days in the hospital. Their plan for me was to not test Tuesday and then have a third party nurse do a home visit and get blood on Wednesday. He turned out to be incompetent. He took blood from the top of my hand, the only time anyone has ever done that, and did not get enough. Nurse: "I think that should be enough" Me: "Are you sure? Should you take more if you are uncertain?" Nurse: "No, I think this will be plenty."
He did not instill me with confidence. I found out later that day that Quest rejected his vial because he did not have the blood up to the green line. Wonderful.
So, he comes back the next morning, Thursday. This time he can't get more than a drop or two of blood. He tells me that my blood is too thick???? Totally incompetent.

Before he left my home I was on the phone to the Coumadin Clinic asking them to call in a blood draw for me to Quest and that I would go there myself to be sure it gets drawn. The doc at the Coumadin Clinic said not to worry about it. My INR had shown great stability in the hospital and I could easily wait a few more days before testing if I wanted. I was insistent that I test that day- I'm so glad that I insisted on this.

Blood drawn at noon on Thursday with a rush order (STAT). Results came at 4pm- INR = 9.7. The Coumadin Clinic asked me a number of questions, including what meds I was on, then figured out it was the amiodarone that made it spike. They had me take some vitamin K2 that I had on hand and called in a prescription for vitamin k1- which is the antidote for very high INR.

The vitamin K1 and K2 did the job all too well, but gave some concern when I hit INR of 1.6. Fortunately, that appeared to be the bottom and I soon got things headed in the right direction.

I'm so grateful for Pellicle and the others on this board for giving us newbies the confidence to self monitor, as well as sharing the publications that show that self monitoring drastically reduces events.

Pellicle steered me towards a great deal for a Coaguchek on Ebay and by day 19 I was self testing and keeping in range. After getting blood drawn from my arms 7/9 days, I was bruising up and very glad to be testing from a prick on the finger with instant feedback.

It is very easy to do. I also have had great cooperation from the Coumadin Clinic. They do not seem offended at all that I self test and I call in results and they suggest my dosage. They also work with me, and allow me to give input and have changed my dose when I felt it should be 1mg higher or 1mg lower after talking it through. I asked them if they could call in several month's worth to the pharmacy, so that I would not need to keep bugging me, and they were happy to do so- I now have 3 months warfarin supply, with refills that will take me out 9 months.

It feels so good to be in control of my own destiny with INR. Strips for the Coaguchek run about $ 5 each with tax and shipping, so it is reasonable. It will be a little expensive on the front end, as I will be testing every day or two for a couple of weeks. I'm tapering off of amiodarone, and so I will need to watch how this affects my INR very closely.

As much as it is nice to have the cooperation of your local clinic, at the end of the day nothing can stop you from buying your own device and strips and taking charge of your own INR.

Please continue to keep us posted Amy.

 

[Amy]

Blood drawn at noon on Thursday with a rush order (STAT). Results came at 4pm- INR = 9.7. The Coumadin Clinic asked me a number of questions, including what meds I was on, then figured out it was the amiodarone that made it spike. They had me take some vitamin K2 that I had on hand

9.7?!?! Holy crap!

K2 YOU had on hand?? Wtf?!?!?!

Thank you for your message Chuck - I’ve been reading your thread but must’ve missed this part. So glad you’re alright now. Phew. Maybe I better get some k2 too. For now I’ve got two big *** bottles of v8, just in case, and eat my daily salad like medicine. The thing is, I feel like the vitamin k2 (in food) is just barely holding down the warfarin - tested at 3.4 today. I don’t really want it to seem like work to have to do this - “I have to eat something green right now even though I’m not hungry” so I’m going to try again to get 1 mg or 2 mg tablets tomorrow, even if it means going to yet another new PCP’s office. Then i can try 4.5 mg a day (10% lower). I was kinda waiting for my body to need more warfarin as it recovers, though. That hasn’t happened.

Take care, & thanks for the image the other day of you arriving home after drinking a lot and testing your own INR, lol. ; ) that made me smile.

 

[Chuck C]

Take care, & thanks for the image the other day of you arriving home after drinking a lot and testing your own INR, lol. ; ) that made me smile.

Yeah, I did leave that out of the story on your thread for the sake of brevity. But, the rest of the story is that I returned from the sports bar at 9 or 10pm to find that my strips had arrived. I was so eager to use them and was sure that I remembered the instructional video. It turns out that having several beers can cause a person to forget some important steps from a video watched the day before, lol.
I burned through 3 strips, before I realized I was supposed to press M, to acknowledge that the number on the strip container matched the number presented on the screen. Well, 4th time was a charm anyway,

 

[ATHENS1964]

I had bought the device before the surgery, I knew it might be difficult to move to a clinic every day until the inr stabilized. Fortunately my nephew is a cardiologist and he helped me a lot, I only went to the lab once to do a test and compare the results.
I had a difference of 0.3 lab and device, then I counted every 2 days and a little later every week. After the surgery there is stress and many issues that the patient has to manage for me the frequent measurement relieved me of the stress of the inr control and gave me confidence that everything is fine.

Amy, I made a simple watch sheet on the page for operating system apple. If you find it useful or someone else send me an email to forward it .

 

[Chuck C]

The thing is, I feel like the vitamin k2 (in food) is just barely holding down the warfarin - tested at 3.4 today. I don’t really want it to seem like work to have to do this - “I have to eat something green right now even though I’m not hungry”

I'm just a newbie at this, but I would not worry about feeling like you need to eat lots of greens to hold down your INR if you are at 3.4. If you are hungry and feel like greens, go for it, but I would not force feed myself a bunch of greens.
1) the amount of vitamin K is very low in greens relative to the prescription. I suspect you would need to eat more than a pound of spinach to move the needle significantly.
2) Even if it rises a little from 3.4, you would still be very much in the safe zone. Statistically events don't start to increase until you are north of about 4.5 and even then, I believe that the literature shows that a brief visit to that level is not a big deal.
Hopefully others with more experience in this regard can comment on the concept of eating lots of greens when not hungry to try to keep INR down.

 

[Chuck C]

so I’m going to try again to get 1 mg or 2 mg tablets tomorrow, even if it means going to yet another new PCP’s office

Why don't you call Cleveland Clinic and see if they will send in the prescription to your local pharmacy? If you talk to your surgeon's team, I'll bet he has a nurse practitioner who can send in the prescription for you.

 

[Amy]

That’s a great idea. Thank you.

 

[BillDaThrill]

I'm just a newbie at this, but I would not worry about feeling like you need to eat lots of greens to hold down your INR if you are at 3.4. If you are hungry and feel like greens, go for it, but I would not force feed myself a bunch of greens.
1) the amount of vitamin K is very low in greens relative to the prescription. I suspect you would need to eat more than a pound of spinach to move the needle significantly.
2) Even if it rises a little from 3.4, you would still be very much in the safe zone. Statistically events don't start to increase until you are north of about 4.5 and even then, I believe that the literature shows that a brief visit to that level is not a big deal.
Hopefully others with more experience in this regard can comment on the concept of eating lots of greens when not hungry to try to keep INR down.

Continuing to learn a lot from you Chuck. So folks are advocating to buy the INR home testing kit prior to surgery - will dive into eBay and check into it. Also, can you give more details about the vitamin K (K2?) pills - maybe brand/strength? My wife calls my diet that of a 2 year (honestly, I think she's giving me too much credit) as I hate greens. The idea of being force-fed spinach is a scarier thought that of my pending heart surgery!

 

[Ilona]

Reading through Amy’s tread sure makes me glad I no longer have to negotiate with my US cardio to start self-testing. While she was more competent and agreeable than your doc, she still was not keen at all to let me test at home. The struggle is real, and there are very few doctors willing to go against the long established tradition of INR clinics : once a month and the quickie call afterwards...plus the bill for:
venipuncture,
lab,
nurse‘s call ( even though the results were emailed directly to me already) just to say “all ok, continue as usual”,
and the doc who “reviewed” my results!

I am in Switzerland now, just completed my second “training” session at the local hospital in order to have my own CoaguChek at home ( the two sessions being required by Roche and insurance to fully cover the cost of tester and supplies)
It is covered by insurance as are the lancets and strips ( 223 strips per year, can be increased at my GP’s request should I need more or I can buy privately from Roche).

Here, it is very much encouraged be a self-testing patient. They still want you to check in with your GP if things get seriously out of whack, but other than that, one is supported to be independent and confident with self-management. The
official guideline is to cross-check 2x a year with vein blood draw once the range is well established and maintained.

I am still working out the kinks, I have too much discrepancy between the vein and machine sourced results. I expect to be going back to the clinic to figure out what’s going on.
Today’s vein draw produced 1.9 INR whereas CoaguChek read 2.4 and 2.3! Fun!
My range is 2-3 so I need to have it straightened out pronto!

Thanks for all the experiences and knowledge shared here, it sure helps with gaining the courage and confidence to self-test! This forum rocks!

 

[Chuck C]

Continuing to learn a lot from you Chuck. So folks are advocating to buy the INR home testing kit prior to surgery - will dive into eBay and check into it. Also, can you give more details about the vitamin K (K2?) pills - maybe brand/strength? My wife calls my diet that of a 2 year (honestly, I think she's giving me too much credit) as I hate greens. The idea of being force-fed spinach is a scarier thought that of my pending heart surgery!

K1 or K2 are definitely things you want to only take under the guidance of a doctor. More on that below. For me, the take away is to avoid ever getting to that very high INR that I did. Here is my view on the best way to do that:

1. Be your own advocate. Prior to going to the hospital, I had researched every supplement I was on as to their effect on INR. Yet, I dropped the ball and did not do this with the medications which I was prescribed. I had too much trust in the system. The NP went over each medication with me meticulously. The pharmacist then did the same on the phone- he even made me repeat back to him how I was to take each med. They also have a computer which, in theory, calls out when there is a contraindication. I trusted that if there was a problem they would have called it out, and did not do the due diligence that I normally would have. I am not saying not to trust others, but in this case, perhaps the phrase "trust but verify" would be appropriate. It literally would have taken me less than 10 minutes to use Google to see if there were any publications on my meds and INR. "Amiodarone effect on INR"; "Metoprolol effect on INR" So, I would suggest taking the time to do this with each med they give you, upon release from the hospital and as a lifetime habit anytime a new drug is prescribed.

2. As noted previously, if I had my own Coaguchek, the immediate feedback would have prevented my INR from ever getting so high. Within 3 days my INR went from 3.1 to 9.7. Had I had my own device I would have seen movement after day 1, which would have initiated the search for a cause and immediate warfarin adjustments.

If someone self tests and researches their meds before taking them, there should be close to zero chance of getting to 9.7 INR, as I did. But, even if I did get there somehow, I would not immediately take Vitamin K. With my own device, I would check it again in the afternoon and see what direction INR is headed. If headed down, I would probably hold off on vitamin K and let INR come down naturally, while surrounding myself with pillows so as not to get any kind of bump that can cause a bleed

It was scary to have my INR go to 9.7, but it was equally scary to have it drop to 1.6 and to not know if it was still dropping. Vitamin K has a dramatic impact on INR, such that it took a couple of days to get it up.

The prescription for vitamin K that they gave me was one 5mg tablet, and I was to take half of it: so 2.5mg. If you felt the need to have an emergency vitamin K tablet on hand, you could have your doctor write a prescription for it, but just don't ever take it unless you are under the guidance of a doctor who really knows what they are doing. Also, it was not an easy prescription to fill. Costco did not have it on hand. CVS also did not have any, but I was able to get the gal to check her computer to steer me to a CVS that carried it.

I still have the remaining 2.5mg on hand if I should need it. I do not expect that I ever will.

Vitamin K2 is available on Amazon, but I would not mess with that. Unlike prescriptions, it is an unregulated supplement, so who knows how much you are really getting. K2 also has a 3 day half life, which may have been why my INR stayed low for a couple of days. Vit K1 has a 27.5 hour half life, so it is more appropriate to knock INR down quickly, but then should allow you to bring it up again. Again, with self monitoring, I can't see ever needing to take Vitamin k in the future and never take either unless you are under the guidance of a doctor.

 

[pellicle]

Today’s vain draw produced 1.9 INR whereas CoaguChek read 2.4 and 2.3! Fun!
My range is 2-3 so I need to have it straightened out pronto

Ask about the reagent used for the vein draw. In reality this is only a small variance. If the vein draw was 2.0 you'd feel better.
Also ask about blood issues that can cause this.

Best Wishes

PS: strangely I thought I'd successfully edited this in, but apparently not.

From a Roche publication on reagent variations and INR

and blood issues such as possible antiphospholipid syndrome need to be considered.
https://clinicaltrials.gov/ct2/show/NCT02139072

 

[Protimenow]

Vitamin K2 doesn't do anything to INR. I've been taking a good quality K2 for many months, and it hasn't dropped my INR one bit. Just make sure that it's K2 and not K1 PLUS K2.

K2 is still something that the body needs,. I'm taking K2 and D - a good combination.

K1 is the form that reduces INR by reducing Warfarin's effectiveness.

You should be able to get K1 in some vitamins. You may also be able to find K1 and K2 in some 'Vitamin K' supplements. A relatively high dosage single pill may work better than a few of the smaller dose pills.

I've seen my INR drop within 12 hours when I've had a large salad - but that could just be me. We all react differently.

(FWIW - I can't tolerate Amiodarone - it's nasty stuff)

 

[Warrick]

I take k1 and k2 supplements daily, so I have experimented in the past with lowering my INR without adjusting dose, and 1000 mcg of tablet K1 took 3 days to lower my INR from 4.2 to 2.2 where it stabilised, so it wasnt instantaneous by any means, a dose adjustment is far quicker to respond.

I thought K2 affected INR also??
This would suggest it does-
https://pubmed.ncbi.nlm.nih.gov/25636520/

 

[pellicle]

I thought K2 affected INR also??
This would suggest it does-

recently @Chuck C had oral reversal with Vit K and he got a mix of K1 and K2 ... but milligrams, not micrograms

 

[Ilona]

Ask about the reagent used for the vein draw. In reality this is only a small variance. If the vein draw was 2.0 you'd feel better.
Also ask about blood issues that can cause this.

Best Wishes

PS: strangely I thought I'd successfully edited this in, but apparently not.

From a Roche publication on reagent variations and INR

and blood issues such as possible antiphospholipid syndrome need to be considered.
https://clinicaltrials.gov/ct2/show/NCT02139072

Thank you, Pellicle! Just starting the day here and saw your message!
it is an interesting possibility re: reagent, and I will mention it to the folks at the hospital clinic when they call today.
Don’t think I have any particular blood issues,certainly no outwardly signs or symptoms of one so far...


All this comparison testing was triggered by, what I thought was a slight, difference of reading between the hospital lab (vein) and CoaguChek during my final info session on self-testing on Tuesday.
CoaguChek Monday night -2.8
CoaguChek Tuesday ( during the session ta the hospital) -2.9
Lab vein Tuesday ( hospital lab)- 2.7

They did not like the % point difference in the readings and have requested I recheck at my local GP‘s clinic/lab which produced the 1.9 result yesterday.

I readjusted my dose last night, will see how it goes. Still quite excited about this little machine, just need to figure out all the little glitches.

 

[pellicle]

Hi
and I hope its a good Friday ... mine's just ending (because Australia)

I readjusted my dose last night, will see how it goes. Still quite excited about this little machine, just need to figure out all the little glitches.

there's an old Confucian saying:

have one watch know the time​

have two watch not sure​

my view is that either 1.9 or 2 are well within realms of safety for people with bileaflet aortic valves.

myself I prefer to steer aways towards a target of 2.5 ... if I'm stable (and you decide that) then if it veers down towards 2 I'm comfortable, similarly towards 3

This is my 2016 data and some discussion ... I hope that brings you some peace
http://cjeastwd.blogspot.com/2017/01/2016-inr-data.html
Best Wishes

 

[Ilona]

Thanks again, Pellicle! Very much appreciate all the info you share in your blog posts! I read most of them right after my surgery in 2018, need some refreshed reading to reabsorb the info now.

Yes, 2.5 is the sweet spot. Thanks to this forum and many of your posts, I am not too concerned with periodical deviation in my recommended range and feel much more comfortable dealing with them when they happen.

Having said that, I would like CoaguChek reading to be more aligned with the vein drawn sample going ahead. It has to be consistently reliable so I am not second guessing the results.

I am not sure I have fully understood what could be done to minimize the discrepancy since the issue came up as the training session was ending and there were many details communicated at once (it‘s a whole new game to deal with the medical jargon in French), but I know it would be something to do with the tester itself and Roche.