OK I have now bought a Coagcheck machine, and it arrived this week, and I intend to try out self testing, despite what appears to be at best indifference to it from the anti-coag clinic, and vehement opposition from the GP, who actually told me he'd prefer I changed anti-coag clinics tro try and talk me out of it.
My clinic (at the hospital) when I told her I was buying one said "well you still have to be tested here monthly, and you cannot adjust your own dose you know it's much too complicated, you must ring me each time your test yourself and give me the results" and then"and we want to check the machine against our blood tests regularly". Huh?
What's complicated? and there is a relatively straightforward table which shows INR results and then dosages of increase/decrease depending on what your latest result is.
Anyway I am going for it if they like it or not, will keep you all posted on how I get on (I can always ring Rosemary if I get confused )
Be well
Ian
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Welcome to the club In ! I've had mine for a year now .Had some problems to start with but all plain sailing now. I make small adjustments myself & let the clinic know. I test weekly to keep a close watch. Best of luck - beats faffing around at surgeries etc ! Sandra
What a rotter! My GP fully supports and prescribes the strips, provided I monthly inform them of my INR and that I annually run the coaguchek results against the clinic. Eminently sensible I would have thought.
I'll be very interested to hear what you think of it. I've had mine for over a year and I think it's brilliant. It may take a few goes at first to get the hang of it but very quickly it'll be plain sailing.
Like you I received only negative comments when health care professionals. WHY ?
I was told they aren't accurate - they are
You can't adjust the dose - well on the odd occasion I have ( Easter bank holiday I dropped to 1.8 and couldn't speak to my GP for 5 days ) so I increased my usual dose by 0.5 for a couple of days and that did the trick and put me back in range.
You might not understand the reading - do they really think we are all total idiots ?
Why is it that those with diabetes can be trusted to prick their finger and read their blood results and we can't ?
I could go on ,but you get the gist.
The biggest advantage of the Coaguchek is at last you are in control of at least one aspect of this condition and that is priceless.
It's a pity they are being so difficult Ian- They will want to check your machine and theirs on the same day at some point which is fine but otherwise they seem to be fussing a lot!!
The protocols are online as you say and when you get used to your results you'll find you can easily tweak it yourself.
My GP knows I won't do any major changes without asking her so she's happy with it.
I don't understand this. Why all the hostility? What's wrong with us being in control - because we are all adjusting our INR levels all the time by what we eat and do. It's not hard to understand that you want to aim for 2.5. That doesn't seem, in fact, to be the target: if you are in range, they seem to think that's fine, even if it's 2.0. And we are supposed to be content with what we're told to do because they know best ....
What's to stop us buying a machine on the quiet and just turning up for well spaced tests with a perfect INR that we have massaged by testing and then adjusting either dose or food?
If I were adjusting my dose I'd be tempted not to admit it because I bet I'd be branded noncompliant and unreliable and that really isn't a good way forward.
Spot on, Relim296! That's what I would do. I've watched the nurse who does my INR checks on a similar machine and she has showed me the chart that is used to adjust dosage. Simple in the extreme. Just swan in, as you say, see what they come up with and casually say "ah, yes...that's what I made it."
because they are muppets ,there is soft wear costing $30 dollars that can pull up graphs and all the rest of it and sort out the warfarin all you do is input the blood test readings and the soft wear does the rest
Never admit you are adjusting your dosage yourself. I have to email my test results to my local Warfarin clinic for them to oversee and they email back dosage and dare for next test. When I bought my 1st machine way back in 2003, they initially said I would need special training (Roche sent a rep to the clinic to explain how the machine works), then the clinic made me sign a contract regarding when I would test ( only when they told me to). Yeah right!!!!! I just smile sweetly, then go and do it my way.......and I'm still here to tell the tale 😊.
I totally agree with all the above comments, having the coaguchek is like having another pair of legs, particularly if you are travelling
and are unfamiliar with local clinics. The only thought I have re the opposition is that warfarin has its own little foibles and can be a little tricky unless you have a good understanding of how it works - must be female!
Well I am glad I am not the only one who found the health care professionals opposed to my plan pf self testing, perhaps it will take a few more of us to remind them that AF is heart condition, it doesn't reduce the IQ.
I agree with you entirely. The clinic treated me as an idiot, my G.P. as an intelligent adult who just wanted the freedom the test when convenient to myself and get on with my life. I believe there is hostility against self testing because it could potentially put jobs at risk, but I also consider the attitude of some of those administering the INR clinics totally unacceptable.
If anyone out there is considering using an INR machine and require any help/advice initially, please do not hesitate to contact me. I found the first few times quite difficult with problems such as, the machine has to be at the correct temperature etc., Self medicating has to be done reducing or increasing warfarin by just half a tablet at a time and waiting 3 days before re-testing. Otherwise, I find the whole process so straight forward and reassuring. Beano2013
Yes, the dosage is important, beano. Small adjustments only apparently. My nurse wanted to raise the INR slightly and I was on 3mg daily. She simply added 1mg on Saturday and Sunday. It did the trick.
There will be some out there who don't want to be bothered too much but the rest, judging by the comments on here, came out of school able to read and write and do sums - intelligent enough to manage our own monitoring.
I love your comment Ian. To Rellim 296 exactly that. As there was so much negativity towards me having a machine I just bought it on the quiet (the GP wouldn't prescribe me the strips). I now go for my 8 week blood test and am always in range,mostly by adjusting diet to make sure that l am but on the odd occasion by adjusting the dose.
As though I'd stay in range continually in an 8 week period otherwise! The downsize of this though is that the Doc. believes I'm stable ,and to be fair I am most of the time because I manage it !!!
To those who still believe our little yellow books are important ,I have never been asked to show it in 2 years of taking Warfarin and that includes numerous hospital visits, dentists ,pharmacy and GP surgery for blood test and then I record the result in the yellow book. Why ?
My son is a paramedic and he says in the case of a bleed or anything else they deal with the problem immediately and then in hospital an INR is done as a matter of course. The yellow book is a useful tool to alert them you are taking Warfarin but then so is telling them or if you are worried that you might be unable to maybe wear a wrist band.
At the end of the day, the stability is the important part. It's our wellbeing that's being messed with here. The warfarin is to protect us and we need it to be high enough to prevent a stroke and low enough to ensure we aren't catastrophically anticoagulated.
I am finding it impossible to be comfortable with a two month gap between tests. I have made an appointment to see my GP as I am constantly going away from an INR appointment feeling dissatisfied. If I say that I'm not happy with the dose or the gap between tests, I'm told I worry too much. As Ian says, having AF doesn't affect one's IQ. I feel I'm being pushed towards being underhand and secretive.
I have a wrist band and I carry my yellow book with me when I go away. It's filled in at my INR test but, as you say feejbee, no one ever asks to see it.
I have had my machine for several years now. I phone my readi g in to the clinic, and they tell me the amount of warfarin to take. They give me a date for the next reading, this can be anything up to 8 weeks, depending on how stable my inr has been since the last reading. I am allowed one pack of test strips a yearon the NHS, there are 25 in a pack, so it makes sense to take my inr every fortnight, no matter what date was given by the clinic. Many times I have been well out of range well before the date given by the clinic, and have had to phone in earlier with a new reading, and had my dosage changed.
I'm sure I read somewhere that those who self test are less likely to have a stroke due to being out of range, so why some areas take this stance on self testing is a mystery to me.
I have been relying on a Coagucheck for the last 3 years. Not once, at any time, has anybody been even remotely disapproving of my using it. The only time I have had to comply with the "masters" has been leading up to a cardioversion or, recently, a pacemaker insertion and, lastly, an AV ablation, when they have, understandably, insisted on a clinical reading for a few weeks prior to procedure. . When my INR goes a bit too high or, even more importantly, falls too low, I subtract one milligram (or add on) on the next dose and then test again after a few days. It is not rocket science. I have managed to keep things going without ever once failing to adjust accordingly when needed. And, occasionally, I do go to the hospital clinic, primarily because they are the only ones who can prescribe the magnetic strips and, yes, I get them on the NHS!!! My Coagucheck would appear to give a reading which is roughly the same as the results from the clinical procedure and, knowing that is all one needs to know. It was, in fact, the clinic who suggested I bring my Coagucheck in and get myself tested, simultaneously, by both methods so that any difference could be established.
I spend my summers in France, in a fairly remote village, and my Coagucheck spares me the inconvenience of going to a distant clinic and paying cash! I can claim that amount back from the NHS but who needs the bother if there is a perfectly reliable alternative available?.
Having said all this, I have just done my first check in over a week and the reading is 1.9. So, tonight, I will increase my dose from 4 to 5 mgs. As it takes a couple of days for the increase to show, I will test again in Thursday and adjust again, or not, depending what it shows. Next Monday, I have my now monthly appointment at the Warfarin clinic and fully expect that they will not want to see me again until well into the New Year.
Bear in mind, also, that nerve damage and ulceration in an old ankle fracture have had me on antibiotics (one of which was Clarithromycin, which is notorious for altering the INR) and very heavy pain killers. In spite of that, I can still manage my INR. Yes, 1.9 is lower than ideal, but at least I am able to correct the difference. And the rewards for self-testing are ginormous!
Believe me, being spared what would otherwise be a weekly very long wait in my local hospital clinic is a huge reward!!
Welcome to the club, Ian. Mind you I thought you were already a long standing member!
I have never realy found any opposition to having my own Coaguchek. The surgery just accepts it and the anti-coag clinic allows entry of readings on-line. I was the first one in the practice to get a machine so I had to educate them about the strips - having a wife who's a GP with her book listing all the prescribable medicines helped!
I can't believe the paternalistic view of some doctors though. I think it's fear of losing control and that control gives them power. It's the same with some in the IT world - they hold onto information tightly and you have to prise it out of them. They fear anyone with a similar grasp of IT.
The new world is about being responsible for your own health and having the tools to enable you to do that. INR control is a prime example. People who self monitor get better INR control. Those who also self manage (i.e. adjust their own dose) get even better control. There are lots of trials which show this.
I do self manage my INR - which is just a 0.5mg adjustment between winter and summer. I calibrate my monitor every 6m against a blood draw at the surgery.
Drop me a private email if you have any problems and I'll try to respond.
My Gp's surgery actually use a coagucheck to measure INR. My husband had one, but he has very hard skin on his hands (years of farming) and he found that he couldn't get blood in the allotted time so he now goes to be tested in he old way!
Yes, exactly, our GP surgery uses a Coagucheck to do the tests, so if they think it's ok why do some surgeries go nuts about it? Odd, isn't it... I can't afford one at the moment but I'd like one - going two months between tests does seem a tad too long to me.
Lis
Hi Ian whatever happened to patients managing their own health? If some areas get strips prescribed some kind of postcode lottery there. Also if they keen to check your machine, as for the records of the obligatory checks that their machine is in change. Mmmm another thought are we not being told everywhere not to attend surgeries and hospitals unless really needed. Range not change
I am sure I read somewhere? That it has been suggested that self testing is the way forward for coag testing. As you know they are not as accurate as the needle but a bit either side is not life threatening anyway! I do agree that the calculations are not really rocket science, but they should be confirmed by the coag team. Maybe a 12 month needle to calibrate the Coagcheck would be the way forward. They could do a full test on the blood to check all the other bits that can show up as well while you are there.
Good luck with it and keep us posted on how you get on.
Hi Offcut, Don't entirely aggre with "not as accurate as the needle". There are many more possibilities of errors being introduced with the needle method. The one time I had my INR checked at my GP's surgery they were 0.7 less than my coagucheck. If my INR had been as low as they said I would have been getting lots of migraine's. I start to get migraines again when my INR gets down to 2.1. The GP said I was at 1.8. My Coaguchek always agreed with the hospital checks before they disowned me for self managing. Having spent most of my working life servicing laboratory equipment and knowing that the coagucheck test strips have an inbuilt calibration check I would accept the coaguchek readings first.
I based that on what the coag clinic told me but they will be biased I dare say I would like to see a second test done now and again just more for a second opinion. We are still seeing posts on here of people told to take aspirin? We are not all moving forward at the same rate and that includes doctors and patiences. I used to get a .2 lower reading at one hospital to another always.
Yes, Offcut, self testing improves your time in therapeutic range (TTR). See this study:
"REAL-WORLD WARFARIN PATIENTS SELF-TESTING WITHIN A COMPREHENSIVE SUPPORT SERVICE REPRESENT A NEW STANDARD OF CARE, ATTAINING HIGH QUALITY ANTICOAGULATION CONTROL "
Better anti-coagulation control has been shown to halve the risk of strokes. Not only that, compared with those who keep their TTR above 75%, those in the 51-75% range have 2.5 times the risk of getting dementia and those only 25-50% in range have 4 times the risk.
I got my first coagucheck machine way back in 2003 and the anti-coag clinic was totally against it. In the end, I contacted Roche helpline (I bought my machine from Roche) and they apparently sent their local rep to the hospital to explain and demonstrate how the machine works. The clinic then "tolerated" me although I had to sign a contract saying I would only test when they told me too!!!! My GP is brilliant and told me how stupid that was. He has always been happy to prescribe the strips and agrees with me - test as frequently as suits me.
Approx 3 years ago I upgraded to the Coaguchek XS - a far superior gadget and easier to use.
A couple of years ago, local clinics were set up for regular anti-coag testing, rather than going to the hospital. Sounded good but I got lost in the system and was left for 10 months without anyone overseeing my testing and adjusting my warfarin dosage. Needless to say I took care of myself. Eventually the system caught up with me and I was summoned to attend a clinic. I took my gadget along as requested, to prove I knew what I was doing etc etc. At my appointment I was treated as stupid for bringing my own machine along.......2 months later I got a phone call demanding I attend a half hour appt for them to assess me and train me in the correct usage of my machine!!!!!! Needless to say I refused, pointing out that "Who looked after me for the 10 months when no-one would make me a clinic appt., when I slipped through the system and that I'd been using a Coaguchek longer than they had??!!"
The result of that is I test myself at home, email the results on their designated day, they reply informing me what dosage to take. If I don't agree with them, I make minor adjustments accordingly and test more frequently.
Good luck with using your gadget - it gave me my life back. Please feel free to ask me anything. If I can help at all, I will.
Some on here will know the trouble I have had to find a GP who will support self testing. Even with the backing of the local CCG Lead Pharmacist, my Practice would not support it, so I had to change my GP completely after 25 years of being with the same one. The new Practice give me my tub of strips as I need them, I e-mail in my results as requested and then the nurse mails me back with my instructions. But I can test in-between if I am concerned and that is wonderful.
When I asked my CCG about self testing, they said they had no guidelines and left it to GP surgeries. They kindly sent me an article written in 2007 'Models of anticoagulation management' (Primary Health Care Vol 17 No 3). According to this, 130,000 patients in Germany were managing their anticoagulation at that time. Note managing not merely self testing.
sounds as if some CCG's and GP's should bring themselves up to date! Havent tried mine yet, but I am considering it. Useful to have the comments from others on this forum, so I can ask and be prepared. Thank you.
Welcome to the self-testing group here on HU. Sounds like you are not in one of the "better areas" regarding GP's and self testing.
I bought my CoaguChek around 12 years ago. At the time I was travelling all over the country and on 2 occasions my INR was rather high, 11 and 8 and had to be admitted to A&E to have it "rectified". On the second occasion I was working in Newcastle and was told to go to A&E that afternoon to get vit K injection and spend the night in hospital. I duly arranged to go to A&E just after lunch that day and sat there till after 11 at night with nothing being done. They then told me I could just go. I was rather annoyed since I had left my car at the place I was working, about 6 or 7 miles away, so had to find a phone to get a taxi back to collect my car. That made me decide to get the CoaguChek, that I knew about via one of my sister's who was a nurse. Initially I had to buy the test strips myself but then a letter came from Roche Diagnostics, about 8 years ago, to say the the UK NHS had approved the supply of the test strips on prescription. I went to my GP and informed her of this. She just looked up her information and wrote me out a 'script. Since that time I have absolutely no problem getting the strips. The only thing I do not get is the Lancets, however I just get some from my son who is diabetic and gets them on 'script.
I have no problem with my GP practice but have had a fair number of problems with the anticoagulation service that I should be under, here if west Central Scotland. They have now dis-owned me since I was self-adjusting at a weekend when my INR went rather high and they were not available. I argued with them and told them I was just following the NHS guidlines for Oral Anticagulation. So, since that time I have been self-managing and am perfectly happy doing so. (have had years of experience when I was servicing laboratory equipment and carrying out calibration checks and adjustments)
Hope you eventually manage to get your GP and anticoag service re-educated and following NHS guidlines.
Is it really a NHS when, where you live in the country decides what rules they follow?
Happy testing and keep well.
Walter.
Good luck Beancounter - sounds like your clinic is in much the same mindset as my GP here in Cornwall. Bye the way have you read NICE Diagnostic Guidance 14 of Sept 2014. (nice.org.uk/dg14).
I had a hernia op, requiring a warfarin stop for 5 days. A short while after the op I had a stroke! I,m68 generally fit and eat very healthy. I now self test. But have to buy strips!! Due to being in Herefordshire Crooks come to mind.
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Warfarin self testing use of Coaguchek 
Long haul travel with self testing machine 
SELF MONITORING NO LONGER ALLOWED
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