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Feeling irritated!

Went for INR check this morning - I have been on same dose for well over 2 years and always in range (apart from the odd one) and pretty stable, I feel.....last 7 were 2.5, 2.5, 2.3, 2.8, 2.5, 2.8, 2.6.

Today they were 3.1 and the computer and nurse immediately wants to lower my dose. Despite me saying I have been fighting off a sore throat for a few days and also started a new medication. It's like there is this big panic if my INR's creep over 3, but I know from past experience, if I lower the dose they will drop like a stone!

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I find that too, if they drop my dose because the INR goes up, it just means stupid faffing till we get back to where it originally was... My flu sent my INR up, but because I have my own INR thingie I measured it before my reading was due and just ate some sprouts :)

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Ha Ha! Eatsalottie.....Yes........I said I was going to go home and eat some sprouts....the nurse was not amused!

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No sense of humour, these health professionals :D

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And it works.! Though doesn't make money for Big Pharma!!!!!

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Boy are we on the same page. There are even certain foods that will help raise INR. I do and help manage my dose with them. Garlic, for instance can help raise INR. Over the holidays my coumadin nurse was off for a week and I had to deal with a nurse who rarely worked with coumadin. My INR was low and I knew I could raise it by cutting out some greens and eating garlic. The nurse wanted me to take an extra full dose. I refused and baked a whole head of garlic cloves, mashed them up. made a little dip and ate the whol thing. 4 days later my INR was right where it needed to be. She didn't know my body and also had to follow the SOP. I was able tomake my own decisions by thinking outside the box because I knew what worked for me. I told my reg nurse when she returned-no problem/situation solved. BTW where is that box so many people can't think outside of?(LOL). And I have often eaten greens with butter and lemon for breakfast when INR too high. Works fine for me.

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It makes sense to me, because my INR's normally stable and only goes astray if something unusual has happened (flu, Christmas). No sense in going through the whole 'oh let's drop it, whoops now it's down in your boots, better spend weeks fiddling' thing. Where's that box again? :)

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Some of these pro's are book smart but have no common since. That's my story and I'm sticking to it! Job well done girls LOL.

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Regarding INR, I think sometimes you just have to be strong and go against what they advise because you know your body. I've done that several times and always been right.

Could you do what you think and then go for another test in a week or two. My surgery always offer to let me go back when I please if I feel the need.

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Yes.....jj50, that's exactly what I am going to do. I am due for another test next Monday and I am pretty sure I can get it back to how it was by then WITHOUT lowering the dose!

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I'll bet you can!

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That's my approach-suggested by my EP and it has worked well for me for almost 2 years.

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Hi Wightbaby,

I've just gone through a similar thing myself.

My last 10 readings (from 8 August 2017 till today) were; 2.6, 2.6, 2.9, 3.0, 2.3, 2.9, 3.4, 3.0, 2.4, 2.7.

I self test (like Eatsalottie) and I just ring my results through to my GP surgery. We have a discussion, I get my new instructions, keep calm and carry on. When it hit 3.0 all the practice nurse did was change the dose day on which I took the 6 mg. ( 3 x days of 6 mg and 4 x days of 5.0 mg = 38 mg a week.

However, when my INR jumped from 2.9 to 3.4 I did some soul searching and realised I'd cut out a lot of green veg. over a period of time. No dietary reason, I'm just getting a bit bored with greens. So, I then went and had a good helping of cabbage. Next day no veg, then the day after a good helping of Brussels Sprouts. End result was 3.0, 2.4 then 2.7 ( which was todays INR).

So long as I have a few veg tonight I expect my readings to stay stable................. until the next time Lol!

This of course is the big advantage of self testing with my Coaguchek device, I can monitor my own progress whenever I like.

I must confess many weeks ago I got this 'cold thingy' and ended up with this constant chesty cough and catarrah, just can't shake it. I spoke to my GP practice Pharmacy last week and knowing I was on Warfarin they advised me to take some cough syrup. I would further say last Sept I had my annual 'flu jab. That said I'm pretty certain the cough syrup had no bearing on the reading of 3.4, because I started the cough syrup a few days after that reading.

Anyway, all I can say is don't panic, we're all in this together.

John

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Hi John, how often do you check your INR and how many strips are in the pack? Mine is checked at the surgery every 3 months and I've thought about getting a Coagucheck however, my INR nurse tells me that the strips used in the device have a short use-by date and are very expensive and because my INR is pretty much constant at 2.5, I would pay out a lot of money for them and end up leaving a lot of them unusable so I would be interested to know, thanks.

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Hi Chris,

My last prescription pack contains 24 test strips. The prescription is dated 26 Nov 2017 and the use by date on the packet says 28 Feb 2019. I suspect your INR nurse has never properly investigated it. So, for me, according to my maths 24 strips will last 15 months.

I too am pretty stable, maybe once or twice a year my INR will chuck a wobbly and I then just increase the testing frequency to suit myself. Usually only if it goes above 3.0. My range is 2.0 to 3.0 with a target of 2.5.

At the moment ( based on the last year) I officially tested 13 times a year. In practice I tested more than that to suit myself - knowing that if I didn't I'd end up wasting them. As a matter of interest my testing frequency can be between 28 and 70 days. The Coaguchek device has its own quality control mechanism built into it, however, once or twice a year I take it into my INR nurse and we do a joint test, that is, same drop of blood on the surgery device and on mine. Always get the same INR reading, no sweat !

I am not sure how expensive the Test Strips are as I get them on prescription. I suggest you look at the Roche Diagnostics website to check pricing. The last I heard Roche did an interest free purchase plan spread over 12 months (if you are in Britain), again check the website.

Hope this helps.

John

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Thanks for that, yes, it does help. I live in the UK and I will definitely look into getting the device. Same INR nurse checked with doc who said that because I was so consistently in range they would not prescribe me the strips so now that I know the time limit is approx 15 months then I think it's worth doing.... plus I think having the Coagucheck is a good idea to have when travelling. So, thanks again - ever onwards!

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Chris, I think your INR nurse is just doing what the Head of Practice sees fit in an attempt to cut costs/save money. NICE Guidelines recommend INR testing of about 2 weeks. Can't remember the details but if you have the time to go onto the NICE website you'll uncover some great information. Research has shown that more frequent testing produces the best results in the context of stroke prevention.

As I understand it todays NOAC'S are very expensive, warfarin is the cheapest and some costings have been done on this but I can't recall when or where I saw them.

Certainly to test every 3 months is outrageous and certainly contravenes NICE Guidelines and clearly reeks of penny pinching. Many GP's and the way they run their practices are simply unfit for purpose.

Yes, I go to Australia a bit and always take my device with me. If my trip coincides with a test date I just test anyway and Skype phone call the details through to my INR clinic. I have always found the trip to Oz and back unsettles my INR and it does tend to rise to over 3.0, no point in spoiling a holiday. I just test more frequently and monitor it and stay with my dosage.

I lived in Sydney and Melbourne years ago so I know exactly what hospital to go to if I needed to and could always return to my old GP's practice if push came to shove.

Good luck,

John

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Hi John, thanks for your response....I agree 12 weeks between INR checks seems lengthy but to be fair to my GP, it appears to be the County I live in (Hampshire) NHS guidelines - so I've copied/pasted the relevant paragraph that I found on their website explaining warfarin usage.

"How often will I need to have an INR blood test?

You will need to have weekly/ twice weekly INR tests when you first start warfarin. As your INRs become more stable, blood tests will be less frequent, such as every 12 weeks.

It is very important that you have regular tests to check the dose you need. If you are unable to have a test on the date specified on your slip, then a test a day or so either side is fine and there is no need to tell us. However, if you are having weekly (or more frequent) tests and you are new to warfarin, please call us as it is important to time the dose changes and test dates appropriately."

So, I'm definitely going to get a Coagucheck but I will have to fund the strips myself for as I mentioned in another post, I've already asked the surgery and because I seem to have a consistent level of 2.5, they will not do so!

Just one more question, how do you manage warfarin when you travel between different time zones? I hope to visit US soon, but will be in two different time zones when there (east/west coast) so I'm thinking just keep to my usual UK time which is 1830 every night -but of course over there it will be breakfast/lunch time!

Thanks again for your help,

Lynda

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Hi Lynda,

I ignore the time zones.

So if I fly out of Heathrow at say, 22.05 on 29 Jan via Hong Kong, I'll arrive in Sydney around 07.20 on 31 Jan. (I quote this flight from the Cathay schedule, its my preferred airline and my preferred journey times).

My normal dose time is 8 pm. So I'll take my normal Monday dose at 8 pm on 29 Jan. In my cabin baggage I'll keep a few days doses of all my meds (the rest of the meds needed for my holiday will be in hold baggage) in case of flight delays. My next dose of Warfarin (and all my other meds) will be the evening 8pm Sydney time on 31 Jan. After that 8 pm Sydney time throughout my stay. Of course my Coaguchek is with me all the time and also in my cabin baggage -just in case.

What happens in between, time wise, I just ignore, and the same principle on the return journey. It just gets too complicated. The point is I've been on Warfarin for so long those few hours aren't gonna put me in jeopardy. Apart from which I stopped warfarin once for a partial knee replacement a week before going under the knife, when I came round I was given a bridging anticoagulant and then also restarted warfarin immediately. No problems.

I do keep on me however, either a letter from my GP or a copy of my latest prescription, confirming that I have a bona fide medical condition that requires all these medications. The letter is best.

Bad luck about funding the test strips yourself but still, long term you could use the results to justify getting the strips on prescription. Just keep a hardcopy record of every test you do showing all the variations (they may not always be 2.5 or a bit either way). And after a long haul flight I'm sure you'll see some swings in your normal readings. The Coaguchek device does have a memory (can't remember how big) which retains your results on the device.

Good luck, enjoy your trip. Get back to me if there is anything else.

John

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Hi, a very belated thanks for the very helpful info.....have taken note of your good advice and will work something out once I know my flight details and if I have a problem, be assured I will get back to you! All the best....

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Move on. Talk with your doc. It's your body. Let the nurse practice on her own. The other part of your post that caused me just a little chest pain (not really) is that your level is only checked every three months. My EP refers to test results as just a quick 'snapshot in time.' What are the levels doing to your body for the 90 days between tests? Start doing your own testing and think about weekly testing instead of q3months. You'll keep a much tighter and safer control on you INR levels. They could be bouncing all over the place during those 90 days and you'll never know what harm-if any- those unknown levels might be doing.

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Thanks Irina, I've just replied to carneuny which should cover your questions. I'm definitely going to get a Coagucheck! I don't know where my nurse gets her info from, trouble is we tend to accept what they always say don't we? BIG mistake!

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Yes. Big mistake and like workers in any field some of us are great, some mediocre, and some downright dismal. I am a retired nurse. Many I know are great and I am glad they are my caregivers. There are others who will explain something to me and I know they have no idea what they are talking about. Since I'm older (73) I tell them I don't want their explanation and I will speak with someone else. If they are offended they can just put me down as a crotchety old b***h!

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PS And if you follow the directions on caring for your strips they will be just fine. Where did she get her info?

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You can get your sticks & reading strips on prescription Chris just ask your GP to do it!

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Hope you can see my response to carneuny....x

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John...thanks for your reply. Sounds like you monitor much the same way as i do (foodwise).

Unfortunately, self testing has NOT reached the isle of Wight yet....my GP was most affronted when I suggested I would like to do that because I felt an INR test every 8 weeks was not frequent enough!

After reading these responses I am seriously considering getting a Coagcheck anyway.......but who would show me exactly how to use it??

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Wightbaby, I rather think you have a bit of a battle on your hands.

When I was diagnosed with AF, which saw me put on Warfarin in the first place, I lived in Dorking, Surrey. My local GP's practice was highly progressive in Dorking and the nursing team were all equipped with the Coaguchek devices. They were all highly supportive and did all the training, not that it takes long but for some people it may demand some dexterity. This is how I learned about the device and found it to be ideal, particularly as at the time I worked shift work and found it difficult if not impossible to get time off work to visit surgery for a blood test.

So, then I retired ( well sort of retired) and moved to Cornwall. The surgery I first registered with fits your description of your practice and they would not support me at all. Even the local CCG, who I complained to and quoted chapter and verse from the NICE website were most obstructive.

Eventually, I did some cold calling of different surgeries nearby to my home and found a largish one that did offer these Coaguchek INR testing clinics. I was granted an appointment with a senior practice GP who interviewed me and took me on. I have not looked back since. As I remarked to someone else on here, my testing frequency can be anything between 28 and 70 days. NICE Guidelines seem to prefer about 2 weeks between tests. I totally agree with you, 8 weeks is far too long (as is 70 days) and I say that having a relatively stable INR.

I think the problem with your GP is his immense worry over his financial budget. To change the way he works he'll have to pay for software from Roche to load into his IT system and then he'll have to pay for training of his nursing staff, along with other costs that Roche may hit him with that I'm not aware of. Not forgetting the expense associated with those entitled to free NHS prescriptions for the test strips. The lancets are of minimal expense ( I buy my own).

There are a couple of aspects to the Coaguchek device if you buy one ... 1) If you follow the instructions, draw blood and drip it on the test strip and ..... bingo get a reading. And that's where most people stop. They've got a reading.

2) But what do I do with the reading. Well then you have to communicate it to your INR nurse who will feed the data into her/his computer which is loaded with the Roche software and this software then produces the dose for the next time period expressed as mg per day and states which day of the week each dose is to be taken on, be that 2 weeks or 6 weeks or whatever. It will also advise the next test date going forward.

If you haven't already I suggest you go onto YouTube and type in the search box, say, " Using Coaguchek XS for INR testing". You'll end up with a range of short videos on the use of this device.

Do you get to the mainland very regularly. I'm thinking you could try and find an INR clinic on the mainland who might take you on as a 'client', so to speak,

Anyway, hopefully, all this has been of some help to you. Good luck. Get back to me if I can help further.

John

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I agree. You have a 'medical skirmish' in your future. But it's worth it. so stick with what you feel is best for you. The squeaky wheel gets the grease!! Good luck.

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Hi WB!

Just wondered if you’d ever considered- if it’s possible - to coming off warfarin on to another anticoagulant - something like Apixaban. I don’t have the nuisance of regular INR checks - I have enough other appointments for various things as it is - I just take a 5mg tablet every 12 hours and that’s it. I was put on warfarin about 8 years ago when I developed AF and disliked it intensely. I was delighted when I first saw my EP and he immediately put me on Apixaban.

In my small experience GPs don’t seem to be very up to speed where AF related treatments are concerned - I rely on my EP in Portsmouth for advice.

Anyway best wishes as always.

John

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Hi John

I am soon to see an EP at QA. Is he any good?

Di

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Hi Hylda

My NHS EP at Queen Alexandra’s is Dr Kirubakaran

finder.bupa.co.uk/Consultan...

He’s been brilliant for me - 2 ablations and no PAF for 18 months now. They have a very good team and he is a charming person.

Good luck.

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Thanks, am down to see him unless Wednesday and Thursday’s tests are such I just see one of the team

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Hope it goes well!

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Thanks Wight Baby.

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hello KP

To be honest I WOULD consider Apixiban or whatever, but I would be really worried about the change over.

Without any "protection" for a few days, I would feel at risk when my heart misses a beat and there is like a longer gap between beats.....

Hope this doesn't sound silly......but having had one blood clot already........

Glad you going on OK, at mo......keep in touch

WB

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Remember that the NOAC will cover you from an hour or two after you take the first one, onwards. So it is just a matter of how long you need to wait to let the INR level drop to the point where it is safe to take the NOAC without becoming over-protected. I suggest you look into this further.

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This may also be an option. For myself, however, I chose to go back to Coumadin because it's more controllable if there are bleeding probles. You have several options. I also liked the fact that Coumadin has been around a long time and is more 'tried and true'. Just my own preference.

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Hi Wightbaby, this type of situation was one reasons why I changed to a NOAC. Of course there are lots of things to consider, but because we travel a lot, it made me wary of what might happen if my INR suddenly changed whilst abroad and then had to get involved in changing doses. I now take Apixaban and have done so for around 2 years and am delighted with the change but I also know many prefer to stay with the tried and tested Warfarin, warts ‘n all! Hope it settles back to normal soon

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The care assistants that run the INR clinic at our practice are very adept at choosing when to grab a GP rather than rely on the software.

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I too was on Warfarin for almost 20 years, my range was 2.5 - 3.0 and I more or less always stayed in range. I bought a self test machine so was able to test myself and contrary to what I was informed I found that altering the dosage took a little while to take effect so test in a week became meaningless so I too used to do my own thing and keep my range and in the end they left me alone lol. I was taken off Warfarin a couple of months ago and now take Pradaxa and find it strange that I dont have to test anymore, in fact weird, I just keep taking the capsules........

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Hi Wightbaby, with your very good TTR it would be a downward step to move to an NOAC. I'd get a Coaguchek and self-monitor/self-manage. That way you can make small adjustments yourself (0.5mg up or down). My Coaguchek was probably the best thing I ever bought.

QA is my local hospital. I saw an EP from there 8 years ago but wasn't greatly impressed and after much research ended up with Prof Schilling in London. I wouldn't have thought they would do many ablations there but I could be wrong/out of date!

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In what way would it be a downward step?

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Warfarin is equally effective as the NOACs if the TTR is greater than 70%. If TTR is greater than 90%, which it looks as though WB is, then warfarin's more effective. In addition it has an effective reversal agent, has a long history of safety, reduces cost to the NHS and in trials has reduced cancer rates by 40%.

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Just for information they made some significant changes at QA a few years ago and now have a dedicated team which specialises in dealing with atrial fibrillation and undertake ablations on at least a weekly basis. When I had mine in 2015 and 2016 there were several others done on the same day. There are at least two EPs with a support team which includes an arrhythmia nurse.

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I do my own INR's for past two years. For meI don'tlower doses too quickly. If I get a 3.1 rather thanmess with the dose I just eat more green veg the next day or so. I've even eaten broccoli and brusselsprouts for breakfast and I get back in normal range, It takes a couple of days for dose changes to show up inour INR's. I think jumping around tooquickly with doses causes more harm than good for me. A lot can be done with food. Research which foods can alsoraise INR (garlic/cinnamon etc. Learn to help regulate with food. I always try food for a week before too many dose changes. BTW all these coumadin problems are why I had my Watchman procedurelast Monday. I want to be done with ALL anticoagulants!

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I agree, try to avoid jumping around with dose changes. I have an erratic diet. I tolerate a wider range. I even treat myself to a big portion of my favourite food: brussel sprouts. The key is that the body copes well with just one splurge.

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I also wanted to add that we anticoagulant patients on coumadin/warfarin are advised to keep our diet stable-esp with greens and eat the same amount daily to help keep our INR's stable. Sounds good on paper but rarely-including myself- have I ever known anyone who eats the same amounts of greens/food every day. Even eating healthy doesn't guarantee this plan will work. There are many other variables to INR levels. So what works for me is tayloring my testing/dosing etc to my diet not the other way around. Do what works for you. And if you can keep your Vitamin K greens more stable day to day you're a better (wo)man than I am Gunga Din!LOL.

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Thanks irina1975, I tend to agree with everything you have said there. It is regulating my food intake that has kept me in range (mostly) for over 4 years now. The 3.1 result yesterday was probably just because I hadn't eaten enough green veg/salad leaves towards the end of last week!

Not sure what the Watchman procedure is?

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Hi Wightbaby. I have recently written several posts about my experience of having a Watchman procedure. Unfortunately my (lack of) computer skills has caused me to post the info willy nilly here and there instead of together to make finding it easier. I would suggest researching info online, I believe those explanations will be much clearer than mine. Be aware that there is another name for the Watchman, The actual procedure is called "Closure of the Left Atrial Appendage Opening." Because inserting a small device (ie called Watchman here in the US) the procedure has become known as the Watchman Procedure. The reason for the insertion of a device is to lowere the risk of clots associated with Atrial Fibrillation and allow the patient to stop taking anticoagulants. Not everyone is a candidate and not everyone wants to get off anticoagulants; they may be doing fine with their current treatment. As it is an invasive procedure there are many questions to have answered before considering it. I was having problems with AC's (anticoagulants) that was affecting my quality of life so chose to do it. I would also say the more you research the better your questions will be. The doctors who perform this procedure are called Electrophysiologists (a cardiac specialist.) I would encourage you to consult with an EP rather than your GP/routine cardiologist/nurses/pharmacists/ your neighbor down the street whose cousin had one!. Go straight to the source with the most accurate info (EP). Then you will get the best advice/info to make your own informed decision. Hope this helps. Take care.

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Hi wightbaby. Sounds like you know how your body reacts and they don't.Stick to you guns.

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I have been self-dosing for 24 years. I have a metallic Mitral valve so my range is higher. However, here is a summary of my principles, which three consultants have recently found to be reasonable.

1. The natural biological background variation can be higher than 2, therefore wider ranges need to be accepted.

2. There is a margin of error in measurements which can be as high as 0.5.

3. Whatever you do, do it slowly.

4. A high dose can have several reasons. I state them in order of likelihood.

a/natural: so leave alone

b/chance: so leave alone

c/ change in the reservoir level: so "step" ie slightly diminish dose for 2-3 days then resume normal dosing

d/ there is a genuine change in the input=output balance: therefore step then 10-20% dose reduction. Note, this is highly unlikely therefore resorting to a dose change for just one result out of range is unreasonable unless there are other known factors.

If in doubt I step. Only if stepping fails I think about a dose reduction. I am not worried about any INR less than 5. I take seriously low INRs because of the margin of error-- for instance 2.1 could be 1.8, and protection kicks in at 2.

My favourite article on this which is an authority with major influence on me, (though I would not now fully agree with it) which you could print and show to your health supervisors is:

"Effect of a simple two-step warfarin dosing algorithm on anticoagulant control as measured by time in therapeutic range: a pilot study." ncbi.nlm.nih.gov/pubmed/198...

Main quote: The algorithm recommends no dose change when the INR is in the therapeutic range, a 10% adjustment in the weekly dose of warfarin when **two consecutive INR results are out of range** by no more than 0.5 units below or 1.0 unit above the therapeutic INR range, and a 10%–20% adjustment in the weekly dose of warfarin when the deviation from the therapeutic INR range is more extreme.

So: two out of range results are needed to merit a dose change. My modification to this is to add the method of stepping before resorting to a dose change.

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