Should I self test

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Paul1972

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ive been on warfarin since my second ohs 6 months ago and now my anticoagulation clinic want me to have lab tests every 6 weeks,this seems a long time to wait. I have purchased a home testing kit is this a good idea or should I leave it to the clinic to advise me about my dosage .
 

Superman

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First, you should check if your insurance or clinic partner with a home testing company. This can greatly reduce your out of pocket expenses if you’re in the USA.

Six ox weeks seems absolutely bonkers. A lot can happen in six weeks with diet, physiology, missed or extra doses, etc.

Worth it to pay for home testing if it’s not covered.
 

Paul1972

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Cheers superman, I’m from the uk and I asked my clinic about self testing and they said they are going to start a self testing trial with a few candidates ,I gave them my name and they said they will get back to me ,that was 3 months ago so I have brought my own kit,the only problem is I need to find out about dose changes if I do go out of range
 

Superman

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You’ve come to the right place then. There are a lot of posters here with a lot of years experience in either self dosing or partnering with their providers in making dosing changes. Some folks can also point you to good online resources for dosing.

While I would always advise to trust, but verify - I think as a sounding board for ideas, this board is a great place to start.
 

Paul1972

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Thanks for all the information superman , I will Hopfully get loads of advise on here ,yes 1972 is my birth year and I agree with you it is a
fine vintage .
 

Paul1972

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Hi Superman I’ve seen on your profile that I’ve had very similar operations as you ,it has given me a real boost to see that you are really doing well 27yrs after your first operation ,I’m really pleased I came across this forum. Regard Paul
 

dick0236

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Paul1972;n882084 said:
.................... and now my anticoagulation clinic want me to have lab tests every 6 weeks,

I agree with Superman that 6 weeks is to long between INR testing.......especially since modern self-testing is so convenient and reliable. I do not know how the English health system works but if you now own a meter I'd self-test weekly or bi-weekly even if I had to buy the strips outright (from a local druggist or ebay) and continue going to lab every 6 weeks. Dose adjusting is not a big deal and you will learn quickly.....it's not rocket science but some coagulation clinics want you to think it is. Welcome aboard, you will find this forum very helpful.
 

pellicle

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pellicle

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Paul1972
as you'll no doubt pick up in those articles of mine above the basic principle is simple.
  • You are already on a dose
  • you have an INR target (or range)
  • if you are moving out of range then monitor that (perhaps mid week or at the end of the week)
  • adjust dose only if you go out of range as a trend that's not just an irregular (and BTW fixing going under limit is more important than going over a bit)
  • often the INR returns without intervention
  • (obviously) if you are going out of range towards LOW then you take a little more warfarin and the opposite for going HIGH
  • make adjustments a little delicate (such as no more than 10%) unless there is something really wild going on
there are some things to avoid but usually that's avoid doing anything to excess ... like don't drink a gallon of Grapefruit Juice daily
 
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Paul1972

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Hi Pellicle, Thanks a lot for replying to my post it’s really helped me understand what to do with my dosing should it go out of range you have made me more confident with what to do,Hopfully my local clinic will get on board with me one day with self testing but as it stands at the minute I will have blood taken by them at six week intervals. Kind Regards Paul1972
 

Paul1972

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Thankyou Dick0236
I value your comments and yes I do find this forum very helpful and informative I now know that self testing is the way forward for me , just hope that my clinic starts its trials soon.
Kind regards
Paul1972
 

pellicle

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Paul1972;n882097 said:
Hi Pellicle, Thanks a lot for replying to my post it’s really helped me understand what to do with my dosing should it go out of range you have made me more confident with what to do,Hopfully my local clinic will get on board with me one day with self testing but as it stands at the minute I will have blood taken by them at six week intervals. Kind Regards Paul1972
Happy to help.

Honestly my best advice is to simply go buy your own machine and begin self testing on your own. You do not even need to tell them. Really how can anyone interfere with you doing what you want to do?
They have no way to ever detect you have done it.

You can then take readings and document. I use Excel to record my weekly records and from that graphs are a cinch ...

You will find that every single post 80's published peer reviewed journal on the matter says the same thing: the key to being incident free is keeping your INR in range, the key to keeping your INR in range is regular monitoring. Preferably weekly.

The cost of the machine is relatively insignificant when you consider the consumables. I would speak with your Dr about it, but even if its not covered by insurance (and mine isn't) at $6 per strip it doesn't take long before the cost of the machine is insignificant. For instance I've tested weekly (and more on occasion) for 7 years now 7 * 52 * $6 = $2184 ... I anticipate testing like that for the rest of my life.

ask yourself this question ... what would you pay to reverse a stroke or a GI bleed (which it may be that you would never have were you self testing)?

happy to help with shared Google Spreadsheets which you can then take over as owner (and keep full privacy of) once you are up and running.

Best Wishes
 
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Paul1972

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Thankyou once again Pellicle for all your advice ,I’m definatly going to self test from now and keep a track of my results, and change my dose if and when.
Kind Regards Paul.
 

pellicle

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Hi

Just a note on managing the political situation between yepu and your lab

Paul1972;n882100 said:
I’m definatly going to self test from now and keep a track of my results, and change my dose if and when.
Just be cautious of adjusting your dose without lab involvement for a little while.

Myself I would (did) self test to compare results for a while, then once the differences are negligible inform them you are out of range and request guidance.

Best Wishes
 

Paul1972

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Thanks Pellicle I will do just that and thanks once again for taking time to reply it means a lot.
Best wishes
 

leadville

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Hia Paul, uk based here
I was in the same situation with my local clinic 4 - 8 weeks appointments which is crazy IMO

ask your GP because a lot of uk surgeries are now giving the coaguchek meters out for free and monitoring remotely via phone/online
you may mind a local GP practice doing this.

just to add, you stay with your current GP you just swop from the local warfarin clinic to a participating local surgery just for the INR testing.

once you have the meter and the strips ( 24 per 6 month on prescription ) just test yourself weekly.

if you want more strips you can buy these online from coaguchek and they are VAT exempt.

best of luck
 
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Paul1972

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Hi Leadville, thanks for the information. I asked my gp a few months
ago and she had never heard about self testing ,she told me to ask my anticoagulation clinic about it which I did and they said they are going to do it in the near future and would get back to me. In the mean time they said I will have to stick to the six week testing.I have
now purchased a testing machine and strips and I’m going to start using it for peace of mind . Kind regards Paul1972
 

dick0236

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pellicle;n882096 said:
Paul1972
as you'll no doubt pick up in those articles of mine above the basic principle is simple.
  • You are already on a dose
  • you have an INR target (or range)
  • if you are moving out of range then monitor that
  • adjust dose only if you go out of range (and fixing going under limit is more important than going over)
  • often the INR returns without intervention
  • (obviously) if you are going out of range towards LOW then you take a little more warfarin and the opposite for going HIGH
  • make adjustments a little delicate (such as no more than 10%) unless there is something really wild going on
there are some things to avoid but usually that's avoid doing anything to excess ... like don't drink a gallon of Grapefruit Juice daily
Pellicle.......you nailed it!
 

pellicle

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Hi
Paul1972;n882104 said:
.... I asked my gp a few months ago and she had never heard about self testing ,
well hmmm ... as far as I understand it she's only about 17 years behind the release of these things to market and the earliest posts on this forum (meaning a demand for knowledge already existed) being about ten years old now ... now admittedly its probably not her field but myself I'd take that as indicative of finding another GP ... if only in areas of cardiology.

https://www.uspharmacist.com/article/the-coaguchek-s-system
FDA-Approved Device
Developed by Roche Diagnostics and launched in 2000, CoaguChek S (Figure 1 ) is a portable monitor, affording clinicians the opportunity to test and receive results in-office and adjust the dose as needed.[SUP]2[/SUP]
 
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