Healthier Lifestyle Suggestions (Article)

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Homeskillet

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Read this brief article tonight & found it informative—but curious if these adjustments (several are natural supplements) would affect INR (?).

Wanted to run it by the forum guru’s for any input.

If y’all see anything suggested in this piece that may interact w. warfarin I would appreciate the warning.

Link: https://www.muscleandfitness.com/features/edge/17-ways-lead-healthier-life

Actually, what I do anymore is basically eat what I want, when I want, and test 2x’s/Week—and make adjustments if need be.

I have to say that the best advice I received on this forum was to just buy my own meters from EBay.

Has been a (literal) lifesaver (I’ve already told the clinic story on here before, so won’t bore y’all w. it again).
 

leadville

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it's a good article and i would agree with eating a lot of what they suggest.

if you eat healthily i would just dose the diet

one option is to get a genetic test done, for example, you may consume enough omega 3 but if you can't process it efficiently then it will not help, i think it's worth knowing these things.

I think @Protimenow means ; tell the tale again
 
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Protimenow

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Yes. Homeskillet wrote: "Has been a (literal) lifesaver (I’ve already told the clinic story on here before, so won’t bore y’all w. it again). "
When I said 'bore me,' I was asking for the clinic story again.
 

Homeskillet

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Yes. Homeskillet wrote: "Has been a (literal) lifesaver (I’ve already told the clinic story on here before, so won’t bore y’all w. it again). "
When I said 'bore me,' I was asking for the clinic story again.
Ahhh—my bad. As you know I bought your extra Coag-Sense meter. About 1 week later I had a lab draw & the lady had a very hard time finding a vein 😡. She took about 3 times trying, but finally found a vein that she thought would work. I sat there thinking “This is going to be a botched INR score.”

About 3 hours later (at about 8:00 PM) the on-call Dr. called & said my INR was 8.5. He told me they tested it twice & it showed that score both times. He told me to hold my next 2 nights of warfarin to get it down.

I hung up & went straight to my newly acquired meter. I tested at 3.3 INR—twice! My gut feeling while on the phone w. the Dr. was that their score was wrong, which it was. I went to the Coumadin clinic the next day & tested the same as at home—on both their CoaguChek & a lab draw.

My INR history demonstrates that I drop like a rock extremely fast if I even lower my dose for whatever reasons (e.g., dental procedure, etc.). My point is, can you imagine where my INR would have dropped to if I wouldn’t have had the home meter? I was in range & would have plummeted to, basically, no anticoagulation at all & would have been there for 2 days.

While no incident may have happened (esp. w. the On-X)—I certainly don’t want to find out! I am forever grateful for this forum, and, in particular, Protimenow & Pellicle (who goaded me into getting my own meter & forget all of the red tape of the clinic)—who very well may have spared me a stroke.

👍👍
 

Homeskillet

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it's a good article and i would agree with eating a lot of what they suggest.

if you eat healthily i would just dose the diet

one option is to get a genetic test done, for example, you may consume enough omega 3 but if you can't process it efficiently then it will not help, i think it's worth knowing these things.

I think @Protimenow means ; tell the tale again
Good idea about genetic test. Never even heard of that👍.
 

leadville

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I used this and then uploaded the data to Dr Rhonda Patrick

Good job you have your own meter.

My AC clinic was average at best, i prefer to take charge of my own INR, health care workers are great folks however the difference is ; i have a vested interest
 
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Protimenow

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Homeskillet -- I'm glad that you've got that extra meter (I have ANOTHER extra meter that I don't need, if anyone is interested), and that you didn't trust the lab.

You've probably seen my posts about lab screwups. The lab receives the blood, tests it, and retests it. AND THEY THINK THAT THIS MAKES THE RESULTS RIGHT. Maybe the blood is mishandled after they take it. Maybe the tech doesn't really know what he or she is doing. Maybe the values for the reagent are all off.

Plus - it's much easier to find a cooperative capillary than it is to find a good vein for a blood draw. (Plus, of course, the good vessels don't always stay 'good' if there are too many venipunctures. With the meter, the blood draws are practically unnecessary - except for comparison to the meter results, or to make some doctor confident that he or she is getting an accurate INR).

Whatever problem the lab is having running a simple PT/INR, it's scary to think about patients who aren't skeptical, and can't self-test, and who listen to advice to 'stop' or 'reduce' warfarin doses. I wonder if labs have the smarts to track the INR results for the lab -- if results for all patients jump higher or lower (as a composite) during a particular time period than they usually run at other times, this could be an indication that something's wrong.

I don't think that listening to your doctor's advice would have given you a stroke for a week or so, if your INR HAD dropped to 1.5 or lower (it takes a while for the clot to form on the aorta, and for it to become dangerous, according to a paper published by the Duke Hospital Clinic), but you shouldn't have been put at risk.

FWIW - I left two messages at the lab that botched my most recent results, and botched results last year - and left a voice message at the facility that did my blood draw - and, after a week or so, still haven't heard back from them.

Coagusense, which I also contacted, took a few days, but DID get back to me, assuring me that their results ARE correct. After years of using their meter, I believe them (actually +/- a few decimal points).

I'm glad, Homeskillet, that you were skeptical of the lab's results, and verified with your meter and at your clinic the next day. (I wonder, too, if the lab, discovering their errror, gave a crap about it).
 
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almost_hectic

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I started a B12 supplement a while back and was literally amazed at the results I could feel. I sleep much better for one, which has helped immensely. But most notably, I have a much more regular heartbeat, with fewer palpitations and a steadier more relaxed heart rate, which having a mechanical valve is easy for me to feel. I even got lax at taking the B12 for a little while and all my old issues eventually came right back. So now I’m religious about taking it. 1000mcg twice a day under the tongue. Great thing is you can’t get too much from what I’ve read, any excess you just pass in your urine.
 

Homeskillet

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Homeskillet -- I'm glad that you've got that extra meter (I have ANOTHER extra meter that I don't need, if anyone is interested), and that you didn't trust the lab.

You've probably seen my posts about lab screwups. The lab receives the blood, tests it, and retests it. AND THEY THINK THAT THIS MAKES THE RESULTS RIGHT. Maybe the blood is mishandled after they take it. Maybe the tech doesn't really know what he or she is doing. Maybe the values for the reagent are all off.

Plus - it's much easier to find a cooperative capillary than it is to find a good vein for a blood draw. (Plus, of course, the good vessels don't always stay 'good' if there are too many venipunctures. With the meter, the blood draws are practically unnecessary - except for comparison to the meter results, or to make some doctor confident that he or she is getting an accurate INR).

Whatever problem the lab is having running a simple PT/INR, it's scary to think about patients who aren't skeptical, and can't self-test, and who listen to advice to 'stop' or 'reduce' warfarin doses. I wonder if labs have the smarts to track the INR results for the lab -- if results for all patients jump higher or lower (as a composite) during a particular time period than they usually run at other times, this could be an indication that something's wrong.

I don't think that listening to your doctor's advice would have given you a stroke for a week or so, if your INR HAD dropped to 1.5 or lower (it takes a while for the clot to form on the aorta, and for it to become dangerous, according to a paper published by the Duke Hospital Clinic), but you shouldn't have been put at risk.

FWIW - I left two messages at the lab that botched my most recent results, and botched results last year - and left a voice message at the facility that did my blood draw - and, after a week or so, still haven't heard back from them.

Coagusense, which I also contacted, took a few days, but DID get back to me, assuring me that their results ARE correct. After years of using their meter, I believe them (actually +/- a few decimal points).

I'm glad, Homeskillet, that you were skeptical of the lab's results, and verified with your meter and at your clinic the next day. (I wonder, too, if the lab, discovering their errror, gave a crap about it).
Yeah, I never heard back from them either—which is infuriating! But, lesson learned & earned.

The study you referenced sounds interesting. I am wondering if the results are the same for the mitral valve? It seems that the majority of studies are targeted at the aortic. There’s a greater stroke risk w. the mitral due to the higher velocity from what numerous cardios & surgeons have told me.

I have found that my CoaguChek runs approx. .3 higher than lab draws, and, as you’ve indicated before, the coagusense is actually consistently closer to lab draw, but is harder to get the blood into the meter (for me at least).

Regardless, I feel much safer having my own backup meters.
 

Homeskillet

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I started a B12 supplement a while back and was literally amazed at the results I could feel. I sleep much better for one, which has helped immensely. But most notably, I have a much more regular heartbeat, with fewer palpitations and a steadier more relaxed heart rate, which having a mechanical valve is easy for me to feel. I even got lax at taking the B12 for a little while and all my old issues eventually came right back. So now I’m religious about taking it. 1000mcg twice a day under the tongue. Great thing is you can’t get too much from what I’ve read, any excess you just pass in your urine.
Interesting, do you have a specific brand/type of B-12?

I have a friend of mine who gets his from the feed store & injects it!

I have done this a few times also & can taste it immediately!
 

Protimenow

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B12 is interesting stuff. There was a time when doctors (some, at least) thought that an injection of B12 would give a quick energy boost. You'll go in to the doctor's office tired and, whamo, you're revived after a B12 injection.

I'm not sure how much was B12 or how much was placebo. I had a doctor who would order vials of the stuff. I'd keep in in the refrigerator, and inject it into the upper thigh once a week or so.

I currently use sublingual (under the tongue) B12 things that dissolve in the mouth. I'm not entirely sure about actually feeling benefits of it.

I bought some B12 powder from Bulk Supplements a few years ago. This STUFF is really concentrated. The daily dose, as I calculated it based on their recommendations is 1/32 of a teaspoon. I did that, in water, for a while, and don't exactly remember why I stopped - perhaps I didn't feel right after taking it.

Also - I think that you CAN overdo it. I'm not sure if all excess B12 is filtered out by the kidneys.
 

Protimenow

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Homeskillet wrote:
"I have found that my CoaguChek runs approx. .3 higher than lab draws, and, as you’ve indicated before, the coagusense is actually consistently closer to lab draw, but is harder to get the blood into the meter (for me at least)."

Homeskillet - are you using the 'new' transfer tubes? These are really thin capillary tubes with a plunger at the top for transferring the blood onto the well on the strip. These come with each box of strips, and Coagusense also has the transfer tubes pre-loaded, with the plungers already placed inside the tube.

I sometimes have issues with preparing my finger and getting a large enough drop - but the issue may be more about prep than with the tubes.

I've found that, contrary to the instructions to hold the tube horizontally, it works better for me if I hold the tube, with the plunger lower than the tube, and allowing the blood flow downward into the tube.

One advantage the Coag-Sense strips is that, if you don't get blood onto the strip before the timer runs out, there's nothing lost. You can try again. These strips can stay out of their foil bag for a LONG time before they're unusable. You don't have to throw them out if you can't get blood to them right away.
 

Protimenow

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Homeskillet - another thing that I recently 'discovered' was that, after many years of incising the same finger in roughly the same spot, a callus or some capillary damage formed, which made it difficult to get a good drop. Others have reported similar issues. So - if one finger doesn't work for you, maybe another one will.

This issue may also come into play for users of the CoaguChek XS - I've had some issues getting a large enough drop onto expired strips. A different finger may have helped here, too.

As long as you get a large enough drop of blood for transfer to a transfer tube (Coag-Sense) or onto a strip (CoaguChek XS) your tests should be fine.
 

Homeskillet

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Homeskillet - another thing that I recently 'discovered' was that, after many years of incising the same finger in roughly the same spot, a callus or some capillary damage formed, which made it difficult to get a good drop. Others have reported similar issues. So - if one finger doesn't work for you, maybe another one will.

This issue may also come into play for users of the CoaguChek XS - I've had some issues getting a large enough drop onto expired strips. A different finger may have helped here, too.

As long as you get a large enough drop of blood for transfer to a transfer tube (Coag-Sense) or onto a strip (CoaguChek XS) your tests should be fine.
Just saw these posts for some reason. Yes, I have indeed found that different fingers tend to yield differing results. For ex., for a long time I used a pinkie finger. It did well for a while, but then, for reason I started having problems getting a large enough drop—so I switched to the finger next to the pinkie & it seems to work like a charm.

I actually feel better having both meters to test on—and you make a good point regarding strips. I have had to chunk sooo many strips due to a poor drop of blood...and they certainly don’t come cheap😡!

I think the best advice I have received on this forum was the suggestion to just bypass the clinic and acquire my own meter. I’ll never forget the day I decided to just take matters in my own hands. I had been fussing for weeks with a NPR at my Coumadin clinic about weekly testings. Of course, she was stressing the every 2-3 weeks mantra & I kept telling her that she was relying on archaic methodology. And, she was also basing her conclusions on her other patients who had A-Fib, etc.

One day during the middle of me trying to convince her that weekly testing is best I asked her what percentage of her other patients had mechanical heart valves. She thought for a moment & said “Around 10%.” I replied, “Exactly! So you cannot legitimately compare me to your other patients.” About 2 weeks later my INR began stabilizing & she said, “Okay, you’re staying range now, so are you ready to come see us every 2 weeks?”

I was stunned & thought to myself, “I’m just going to have to take matters in my own hands😡!”—which, as you know, I did...and it saved me from a possible major stroke. I have often mused, “How on earth can it be that I’m a newcomer to this stuff—and I am catching YOU (Coumadin clinic lady) making serious miscalculations....and you do this for a living everyday???” What dingbats!
 

Protimenow

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You can't always blame these poor workers at the anticoagulation clinics. They're following protocols that they have to follow - or, perhaps, lose their jobs.

I was doing weekly self-testing, and every time I went to the anticoagulation clinic, my INR was in range. They even had a pet name for me, because my INR was always in range (Mr. Consistent). When I started showing up in range, they started scheduling a longer gap between tests. From two weeks between tests, to once monthly and then, inconceivably. every two months. argued with them that even two weeks was not enough. They told me that this was their protocol, and they couldn't deviate from it.

I was really glad that I did a weekly self-test. I stopped using them once Medicare kicked in.
 

tom in MO

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Just saw these posts for some reason. Yes, I have indeed found that different fingers tend to yield differing results. For ex., for a long time I used a pinkie finger. It did well for a while, but then, for reason I started having problems getting a large enough drop—so I switched to the finger next to the pinkie & it seems to work like a charm.

I actually feel better having both meters to test on—and you make a good point regarding strips. I have had to chunk sooo many strips due to a poor drop of blood...and they certainly don’t come cheap😡!

I think the best advice I have received on this forum was the suggestion to just bypass the clinic and acquire my own meter. I’ll never forget the day I decided to just take matters in my own hands. I had been fussing for weeks with a NPR at my Coumadin clinic about weekly testings. Of course, she was stressing the every 2-3 weeks mantra & I kept telling her that she was relying on archaic methodology. And, she was also basing her conclusions on her other patients who had A-Fib, etc.

One day during the middle of me trying to convince her that weekly testing is best I asked her what percentage of her other patients had mechanical heart valves. She thought for a moment & said “Around 10%.” I replied, “Exactly! So you cannot legitimately compare me to your other patients.” About 2 weeks later my INR began stabilizing & she said, “Okay, you’re staying range now, so are you ready to come see us every 2 weeks?”

I was stunned & thought to myself, “I’m just going to have to take matters in my own hands😡!”—which, as you know, I did...and it saved me from a possible major stroke. I have often mused, “How on earth can it be that I’m a newcomer to this stuff—and I am catching YOU (Coumadin clinic lady) making serious miscalculations....and you do this for a living everyday???” What dingbats!
Every 2-weeks but at least once a month for home testing has been established as a best practice for quite a time. It's based upon statistics and science. If your script is for biweekly testing, my INR strip provider will send you a few extra strips if you need to test more frequently due to problems. You have to call and ask. However, per my cardio's nurse, my insurance company will allow weekly testing but my cardio has to write the script for weekly testing. The insurance company doesn't question more frequent testing, but it can't be the default frequency. I took this route in case I wanted to test more often and to give myself a buffer of extra strips. If you can afford the strips, you can test every day, just don't expect the insurance company to pay for it.

Your nurse is not a "dingbat" she is doing what is best based upon her boss, her training, the medical community and the insurance company. If you think something else is better, you need to learn how to "work the system" or pay more.
 

Protimenow

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Can you cite a source that says that testing every two weeks is a best practice? A stroke can occur in as few as ten days if the INR is too low (according to a Duke University Clinic's report). I believe that in the U.K. and much of Europe, the accepted practice, and the way that patients are able to maintain their INRs is to test weekly.

And you said 'my INR strip provider will send you a few extra strips .' Why whould your provider send me strips?

The anticoagulation clinics often use outdated protocols for managing INR. These are the same people who advocate for testing monthly or even every other month if a patient's INR is stable.

Once weekly testing is safer than every two weeks.
 

Homeskillet

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Your nurse is not a "dingbat" she is doing what is best based upon her boss, her training, the medical community and the insurance company. If you think something else is better, you need to learn how to "work the system" or pay more.
Ummm, since I was the one dealing directly with her—and witnessed her clear stubbornness & patronizing way despite how many studies I referenced—I think I would far more able to ascertain her character than you.

You actually make my very point above. They often rely on outdated information/methods and do not emphasize continuing education. I now have an EXCELLENT NPR at the Coumadin clinic—who completely agrees with my situation with a mitral mechanical valve.

Opinions are like feet—everyone has them and most of them stink👍.
 
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