Four or five days ago I posted (in response to jeanjeannies “My bleed”) and commented that my INR had “chucked a wobbly” and suddenly shot up.
Well here is an outline and an update.
My INR test eventually peaked at 3.3 on 29 June, the day before my scheduled test. But fake news comes in different forms !
Come the day of the test ( 30 June) it then hit 3.4. I phoned the results to my INR Clinic and a few hours later they phoned back with my new dose and new test date. So, I went along with this and two days later, on 2 July I tested again .... more fake news bingo ! jackpot ! a new high ...of 3.9 !
I checked my latest doseage against my previous doseage and found, much to my dismay that they had only changed around the daily doseage which resulted in the total weekly mg of Warfarin dropping by only 1 mg.
I pretty unhappy with this as it was ignoring the trending of my INR readings, that is upwards and rapidly so. I decided not to wait any longer but to hit the problem with a Whammy, That night I cut 1 mg of Warfarin off my daily dose, then held it at the level of my new prescribed dose. 4mg. I also reduced my evening meal intake of green veg.
This morning I tested and got a reading of 2.6. Whooopee, back in INR Theraputic Range and almost on my Target INR of 2.5
Now to resume the Clinic prescribed dose tonight (5/7/2020) of 5mg.
John I have complained about the lack of intelligence in the system for years. There is no algorythm to spot trends and they keep you on the same dose till you fly (or drop ) out of range. Even though I do not self test I do self adjust my dosage or else I too will be out of range.
Exactly right Bob. This year had seen me more out of range than in the past 9 years or so, previouslyI've been in range about 95%. But as I said to Jean, my greens eating habits are probably my downfall. If I could go through life without eating any greens I'd be a happy lad - al beit not a healthy one.😃
Certainly, the trends are often as important, if not more so than the actual numerical values.
I often do what I think is best re my dose of Warfarin and you know what, I've never been wrong! So I certainly don't blame you for doing what you believe is right. We know how our bodies respond to this drug better than anyone.
I used to alternate with ginger and cinnamon in my morning muesli, but I've noticed that now I just have ginger my INR has gone up. Who would have thought a few extra pinches of that could have such an effect!
I'm having a bit of a job getting enough blood to come from any of my fingers at the moment. I've just wasted 4 lances and strips. Have you any tips?
Jean, I find this can be a variable for me. I give my hands a good warm water wash and massage the tip of the finger I am gonna puncture, usually the long finger (3rd) of the left hand. I also
set my needle device on setting 4.5. I have to admit though that I hate greens and am terribly unstable and fussy on what I eat and with what meat. Not smart 😟
All that said, I wasted a strip this morning, didn't draw enough red stuff.
Are you well now Jean, or at least continuing the onward and upward path. Hope so 😃
Well my nose hadn't bled again, but I'm having awful pains in my stomach. I foolishly ate a roast beef dinner last evening and my did I have some pain then. Still felt sick from it this morning. (Probably gall stones). Will have a chat with my doc as soon as I can.
My sister is coming from Kent this evening, she wants to buy a house down here, so for the next few days that's what well be doing, house hunting! At the moment we are booked to view 4.
Well, I hope all goes well for you and that the time with your sister is a big boost for you.
Funnily enough, the start of all my digestive issues occurred in Sydney in the late 1970's - gall bladder ! The executive decision, back in the day, was to do nothing. Some 10 years later when I lived in Melbourne the same issue arose - again no action taken. Little did I realise the journey I had started.
Enjoy the time with your sister and the joys of house hunting
Did you ever have your gallbladder removed? Or did the pain just go away on its own. I can't understand how I've suddenly gone from being able to eat anything to suffering such pain if I have fatty food. Mind you I mustn't exaggerate as I've only had three attacks and all over the last couple of weeks, but so painful!
Hi Jean, sorry to have been a while getting back to you. No I never had it removed.
I had all this trouble, when it first started I mean, when I was in my early/ mid thirties. It seems that the problem was food/diet related and it went away on its own and in those young tender years 😂😂 I now realise was my first encounter with food and body health. In fact, in the odd idle moment I have I reflect on my past medical history and I now realise that problems with my gut and digestive system were beginning to emerge some 40 years ago. Indeed it was that far back when I had to cut out onions, lettuce and tomatoes - then at the other end was fatty food, and nice thick gravy. Any gravy I have now is both gluten free and watery. Since those early days when I lived in Australia I have had no gall pain to speak of on a regular basis BUT I have to wonder if there is an association between the gall pain of years ago and bloating pain of these days now which is likely to trigger me into an AF event. Not that I think or obsess about it that much. No point in hunting for needles in a haystack, everything is under control now ( except my INR).
Hope your house hunting is going well and you are having fun 😊😊
How's your INR now John? Surely something you've eaten or drank a little differently must be the cause? Any ideas what? My results have always been inconsistent and I put that down to living on my own and having to use up a bag of mixed salad leaves over a few days.
My sister made an offer on a house in the road behind where I live and it was accepted. She hopes to move down here in September. I just hope that doesn't mean my peaceful life will end now. She can be quite snappy at times. I think that by living on her own she will, hopefully, find a calmness in her life as I have.
Let me know if you find the cause of your INR changes please.
Yep, a beautiful set of numbers now, just what I like to see ........... see below .........
DATE TIME INR
30/06/2020 7.27 3.4 *
02/07/2020 5.02 3.9 took 3 mg
03/07/2020 4.59 3.6
04/07/2020 4.46 3.1
05/07/2020 7.53 2.6
07/07/2020 5.27 2.4 * resumed normal INR clinic dosing
08/07/2020 6.49 2.6
09/07/2020 5.36 2.7
10/07/2020 5.17 2.4
11/07/2020 4.59 2.5
* = Official test dates for INR clinic
Cause ............
😂😂 ........me being fussy and picky and messing around with my greens. I have always hated greens, as a kid my mother had to almost force feed me Lol! I am now having very, very very small helpings of greens daily and hope that the consistency factor will keep these beautiful set of numbers.
Good news about your sister ......... snappy or not, Lol! You never know, it could be good news for both of you.
So in your heart you had an idea what was causing your INR to fluctuate. I guess we all do really, though I don't think I ever got to the bottom of why mine once jumped up to something like 6.3. I think that was a time when my surgery insisted I go for a month without being tested. I just cant go that long and really need testing each week. When I had my nosebleed it had gone up to 3.3 after being left for 2 weeks.
After taking all the advice here I managed to do an INR test first time, so thank you for that.
I never eat just one thing at a time on my dinner plate, there's always about three different items on my fork. Could you eat your greens along with something else?
The sun is shining here and I hope it's the same for you, have a good day.
I was online and looking at not just self testing for my INR but self managing the whole process and as a result I am today putting a case together for my surgery to support and approve. When I was online something I read made me go to YouTube re using the Coaguchek device and drawing a blood sample.
So, assuming you are using the Coaguchek XS device you might like to go to YouTube and in the search box type ..........."Coaguchek XS Professional Meter - How to Perform Tests". It shows - amongst other things- how to draw blood from your finger. It pretty much is a video presentation of what Irene 75359 describes.
Nice n' sunny yesterday and is the same at the moment - but rain is on the way ☹☹☹
Thank you for the Coagucheck link John. I could have done with seeing that right from the start. I notice it said to put the blood sample to the left of the strip. I'd been putting it in the centre. Do you do that? It's made me think I need to read all the instructions for its use again.
Hope you are successful with your request to self manage your whole INR process. Good luck.
Bear in mind I've been doing this for 10 years ........... I have noticed my blood draw does vary quite a bit. I always wash my hands in warm water and dry thoroughly. Then I massage my chosen finger BUT I massage it a good bit longer than they show in the video.
Back to the blood draw ...... for me personally, any one of three draws can occur;
1 after massaging and using the lancet, blood can spurt out in a mini fountain and settle into a blob on the finger - so, plenty of blood and I can drop it into the centre of the test strip, no problem, no waste and always get the QC tick come up and no problems.
2 Other times I do the same thing and I just get a nice big blob of blood settle on my finger and again there is so much blood I can drop it on the centre of the strip no problems.
3 other times my chosen finger produces very little blood and even when it emerges from the puncture mark I find I am still massaging the finger without wrecking what blood has come out of the puncture.
In the case of 1 above I drop it straight onto the centre of the test strip
with 2 depending on what is most comfortable I'll either drop it in the centre or I'll put the strip in the device and hold the test strip and device at a lower level than the finger and slide the edge of the test strip into the blood blob and the blood flows quite easily and freely onto the strip.
with 3, I always slide the edge of the test strip into whatever/how little blood there is and leave it until QC and tick appears.
However, in most cases of the 3 techniques no 2 is the most common one for me.
Again I have evolved this over 10 years. BUT I always make sure I get the QC tick. Then I know the devices internal quality control mechanism has recognise quality blood and that the INR result will be accurate.
If you mess up at all the device will not hesitate but to give you an error message, say ERROR 5 -it pops up on the screen. you can't miss it. Then when that happens refer to your little user guide book and check the section on error messages and see what it says.
Warm hands are a must! After using the lancing pen, don't put your finger near the testing strip until you have a decent blob of blood on your finger. Put the finger with blood on the strip and don't move it off (this is really important) until the bleep sounds. I used so many strips in the early days and now I am successful every time.
Regarding gallstones I could hardly eat anything without chronic pain and nausea I was afraid to eat normal foods even homemade chicken soup had me reaching for the heat pads.
I lived on sushi , noodles and dark chocolate for the 9 months waiting for the op.
Happy to say after surgery to remove the gall bladder all has been great and that was 5 years ago.
Good tips about warming the hands before taking blood for self testing INR I also have wasted many a strip with not enough blood on the test strip.
I have to pay for mine in New Zealand not funded unfortunately so every wasted strip costs $10 are you funded in the UK?
Thank you for the gall bladder info. It's odd that you could eat dark chocolate, because that would surely have fat in it? Some things in life are strange though! Also good to hear that you have no problems now, that gives me hope.
The INR strips and lancets are free to all who are of state pension age in the UK, as is every single drug we're prescribed. Yesterday after warming my left hand in water and putting a fleecy glove on it for a while, I did the test first time. Yippee! Mind you, I did wonder if it was going to be enough blood.
I'm glad you're getting your INR back on track. Have you considered self-management? I.e. you decide the dose (I don't tell the clinic I do this!). It sounds as though you could do a better job yourself. Also changing from 5mg to 4 mg is quite a high % change. Are you able to get 0.5mg tablets? They're white. You might get a more stable INR if you just adjust from 5 to, say, 4.5.
Also you sound like a candidate for vitamin K2 as you don't like greens. That would regularise your vit K intake and also provide the essential benefits of vit K.
There was quite a gap from 03/06 to 29/06 when you didn't test. I try to do a test every 2 weeks.
I also wash my hands in hot water before and massage the appropriate finger. Otherwise I get Error 5!
I have to admit I have found myself drifting more and more toward self management. I don’t think it is or should be for everybody but I now have the confidence ( particularly after observing how my INR has behaved after two medical procedures, i.e. Brain scan which resulted in a diagnosis of TGA and much later knee replacement surgery).
Weirdly, I have always had a love of numbers and they way they behave ( Statistics) and the story they can tell.
I will investigate the 0.5mg Warfarin, I used to get it when I lived in Surrey but am not sure down here in Cornwall. Is there a problem with getting a pill cutter and cutting a 1 mg in half I wonder ? I notice the blue (3mg) has no line across it, whereas the brown (1mg) has a line across it, suggesting the blue should not be cut in half but the brown can be.
I will experiment with the K2 vitamin and see how I go. It’s all part of the journey I guess.
Normally I do test if I can between every 10 and 14 days, can’t think why I let it go so long.
I do understand that the movement from 5 to 4 was quite large but I was pursuaded to do this because of my interpretation of the trend. On what I saw it wasn’t going to take too long to hit the magic INR of 5 or more and so I decided a short sharp hit would do the job. It seems to have been a turning point in the exercise. Panic stations perhaps
So often I have found an interpretation of a trend is of more value than the actual number itself .....if you see what I mean.
Anyway Mark, watch this space ........... I shall post more on this topic as time unfolds.
Thanks for your reply. With the brown 1mg pills, I find I can easily break them in two. I found this much easier than trying to cut before I got the 0.5mg. I had a pot I put the half pieces in. With the line facing up, if you press down on both sides with your thumbs with a finger pushing up it breaks cleanly with minimal effort.
I have just posted on HU two tables of my INR behaviour at the time of two medical procedures. Hope you can read them - they are copies of Screenshots.
Yesterday, 7 July was my official reporting day to my INR clinic. I phoned my result in expecting a return phone call about 3 hours or so later.
Crikey !!! I got a phone call from the Senior INR Nurse within about 10 minutes ...... she sounded fraught - to say the least - she went head to head with me, obviously suspecting something " thats an amazing drop from 3.4 to 2.4 in a week since the previous test." I just remarked I'd been playing around with my green veggies. After a long conversation with her she calmed day ...... " oh well, I know you know what you're doing" I also reminded her about how my INR behaved at the time of these two procedures and that it would take an awful lot to cause me to stress out after that. She didn't know about those results so I promised her I'd email them to her to keep on my file.
I agree with Mark S. Use small dosage changes. You are below INR=5, so well below real risk. I have successfully broken tablets into quarters.
There are three main reasons for a high spike. I place them in my order of likelyhood:
1/ Chance. Test 7-10 days later, no initial change in dose, as recommended by Schulman S, Melinyshyn A, Ennis D, Rudd-Scott L. Single-dose adjustment versus no adjustment of warfarin in stably anticoagulated patients with an occasional international normalized ratio (INR) out of range. Thromb Res. 2010 May;125(5):393-7. doi: 10.1016/j.thromres.2009.07.006. Epub 2009 Jul 29.
2/ Change in Reservoir level
3/ Change in the in=out equation.
Picture a reservoir. I think most problems come when the reservoir gets too high for one reason or another. But most often, people jump to adjusting the dosage. No wonder there are problems!
There is another option. The answer is to adjust the reservoir level, then continue on the old dosage. I adjust it by doing one day of 50% then one day of 70% dose, then normal dose. This usually does the trick. If not, I repeat the trick and finish on a tiny dose reduction. I explain this in detail in my article Lowe I. 2017. Warfarin self-dosing, a case study on long term self-management of anticoagulation. Journal of Observation Pain Medicine Vol 6 pp 31-40. joopm.com
Thank you very your very interesting comments and the various items of reference material you supplied.. I suppose I was strongly influenced by the results of stopping Warfarin for two medical procedures I had in recent years.
I'll publish these on here separately as I think MarkS will be interested to.
I have now stabilised to roughly the mid values of my theraputic range ( 2.0 to 3.0) ...... the numbers following my 3.9 are as below
DATE TIME INR
02/07/2020 5.02 3.9
03/07/2020 4.59 3.6
04/07/2020 4.46 3.1
05/07/2020 7.53 2.6
07/07/2020 5.27 2.4
08/07/2020 6.49 2.6
I have now reverted to my INR Clinic prescribed doses following my scheduled INR test on 7 July 2020 and so am hopeful I will now stay stable and on track. My INR clinic Senior nurse did remark on how quickly my values had dropped from 3.9 ....... I am sure she suspects I did some self managing ........... but didn't say so, other than - "well, I'm sure you know what you are doing. You know where we are if you want us."
😊 Next test 21 July.
Thanks again, I'll remember your advice and that from Marks about smaller dose adjustments.
Just to be clear. You got these results by a dose change from 5mg to 4mg?
I love data, and I love 'eyeballing' it. I think it takes considerable courage on your part to come online with your own case and put up with my comments Of course, you alone have the whole picture, and memory going back a long time. These are also essential elements in dosing.
OK so, let me walk you through it ............... firstly though, please understand that my INR is always taken first thing in the morning, immediately after getting up and starting my day. My Warfarin dose is taken consistently around 8 pm. Its a personal lifestyle convenience thingy.
So,
1 ... 30 June - with a INR of 3.4, my INR clinic prescribed 4 mg ........... I took 4 mg
2 ... 1 July -I did not take an INR reading but my INR clinic wanted me to take 5 mg ... I took 5 mg
3 ... 2 July with a reading of 3.9 I figured if I continued with the INR clinic plan I could soon be up around 4.3 etc, etc. Now my INR clinic wanted me to take 4 mg BUT, at this point I decided my next dose would be 3mg ... I took 3 mg.
4 ... So on 3 July with an INR of 3.6, my INR clinic wanted me to take 5 mg, I decided I would take 4 mg.
5 ... 4 July ... with an INR of 3.1 my INR clinic wanted me to take 4 mg, I decided to take 4mg and from that point on stay in line with my INR clinic doses.
6 ..5 July my INR was 2.6 and I decided job done, back in range, I'd now fall in line with INR clinic prescribed dose.
Since then, 7 July my INR was 2.4 and 8 July my INR was 2.6 . I am now still adhering to my INR clinic prescribed amounts, which are 4 mg and 5 mg every alternate days, So tonight (8/7) I take 5 mg and on 9/7/20 I take 4 mg .... and so it goes on, 4, 5, 4, 5, 4, 5 etc until my next official test date of 21 July.
I don't have a problem with posting this sort of information. I know it is not for all and sundry, but if it contributes in a positive way to discussions on Warfarin , INR testing et al ... then I hope it improves the learning process. I certainly am learning all the time from yourself and MarkS.
Like you I enjoy numbers and applying the core elements of 'Statistics' to them and they will tell a story.
I am, moving slowly and slowly more toward self management and am enjoying greater levels of confidence in doing so. Warfarin is nothing to be afraid of, just understanding it.
Hope all this helps, if you have more questions do ask away.
OK. Thankyou for patiently explaining. There is a major factor complicating matters: the way you alternate 4 and 5mg. A dose of 4.5mg is easy to do: simply break in half a 3mg tablet. I use my thumbnails and do not worry if it is divided into equal halves since it all balances out nicely.
If I understand it correctly, the clinic maintained the alternate days 4/5 mg then went for a dose change to 4mg, whereas you first lowered the reservoir on 2 and 3 July by taking, each day, 1mg less than recommended, then you settled on 4mg. So from now on, your daily intake is 4mg instead of your previous average daily intake of 4.5mg. Excellent. You dealt with the reservoir then changed the input. Your clinic thought only in terms of changing the input.
I might add, that following the 'crash landing' approach I took earlier in the week my INR has now stabilised at the mid value of my theraputic range: as below where I have now gone back to 30 June for ease of reference only. My current dose is now as advised by the INR Clinic.
DATE TIME INR
30/06/2020 7.27 3.4
02/07/2020 5.02 3.9
03/07/2020 4.59 3.6
04/07/2020 4.46 3.1
05/07/2020 7.53 2.6
07/07/2020 5.27 2.4
08/07/2020 6.49 2.6
09/07/2020 5.36 2.7
10/07/2020 5.17 2.4
11/07/2020 4.59 2.5
Almost a beautiful set of numbers ...........😊
Thank you for the reference material you provided earlier. I have now downloaded this and once printed it I'll go through it all now that I have a few days off work. Perhaps I might get back to you on any points if I need to.
You could always try the windmill exercise to try and use centrifugal force to push blood along your arms towards the fingers. Beware of light fittings.
Hi ectopic1,
Thanks very much for that ..... expressed graphically makes it much more interesting - and easier to understand.
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