Hello everyone
I have successfully self tested my inr and amended my warfarin dose for several years now. Before this I was never in range but am now nearly always spot on. Next year we move to Cheshire. So far, it seems no GP has self testing patients. I just wondered if anyone here lives in Cheshire and is self testing/dosing.
Thank you.
Lynn
Hi Lynne
It’s a bit of a post code lottery, not sure about Cheshire.
I moved from the south coast to up north and here in the north protocols are completely different.
South- venous sample done at docs or path lab results emailed
North- nurse led clinic who use coagucheck. I have my own and phone results in, speak to nurse and that’s that. No trouble getting testing strips
If you know where in Cheshire your moving to you could give local GP a ring and see what they say.
I wish I had done that then change wouldn’t have been so confusing.
I will say that my warfarin nurses are very good and will discuss etc
J
Thank you 😊I did call a local gp and they were adamant no-one self tests. So I rang the ccg. They said they will research and then phone me back. Doesn't look good but I shall fight again as self testing is brilliant. Interesting that NICE guidelines are in favour of self testing which is promising.
I would have thought that given your successful self-testing and poor history beforehand, they can't say it is not in your best interests to continue self-testing. If NICE guidelines support self-testing I would have thought they would have to have a specific reason why you personally cannot self -test, irrespective of whatever they have done before. A friend of mine has found that putting things in writing to her GP has helped her get what she needs out of them. I am about to start doing that myself although in relation to HRT, as I am on apixaban. Could you get your current GP to write you a letter supporting your management? Then perhaps send it with supporting evidence to your potential GP?
All the best with it all 
Thank you for replying. The ccg patient rep phoned me yesterday. She reiterated the official line of no self testing but listened to my story. I told her that I self test/dose and have to self inject clexane when inr too low, She said she would email me the official reply that she had received from ccg and that I must reply to that telling them all I had told her. I too thought a letter from my gp might help. It seems to me that they will not want me to be at risk so will possibly agree but it will take time which is why I am starting now before the actual move.
I wonder what INR you are aiming for? I am also selftesting and dosing since several years in Stockholm. With a coagulation clinic behind me and a Hematologist who knows APS and me also. I need an INR of 4.0 and I am also positive for Lupus Anticoagulant.
Hope you also double-test in the vein to know if there is a stable difference between the two (finger and vein). As you know it is the vein-value that counts. Usually the fingerpricktest is higher with the CoaguChek XS.
Hello Kirsten
I aim for 3 to 3.5 I too have LA.
Cross checks with vein sample have always been the same or nearly the same thus far. I say thus far, as we know how unpredictable and volatile APS is.
Thank you for replying.
Varies even in "north" - where I am all the clinics have swapped over to coagucheck, but it's usually a pharmacist for doing the actual dosing. They also do venous cross-checks for APS patients before authorising going on coagucheck results (or self-testing), and regular self-test reviews with venous cross-check.
The clinics are all part of a central service, mostly hospital based and run from main hospital trust, not run by GPs (not located at GPs either). Because the CCGs contract the whole of (warfarin) anti-coagulation to this central service we cannot get test strips on prescription from GP, and the central service won't (yet) provide them. I don't mind - they would only provide one strip every two weeks anyway and I test more frequently than that, but that's for me, not for them (I don't call every result in).
Thank you for replying. At my present gp I get a tub of strips as and when I need them. I have had TIA's when the system let me down ie when I (politely) said my warfarin dose was too low but they refused to increase it.. So this led them to agreeing to self testing when they saw the state of me. Before I was diagnosed one episode led to 18 months once a week stroke rehab, so not really a typical TIA as it took so long to recover.
It was probably a sort of stroke. TIA just lasts up to 24 hours. Transient ischemic attac.
Yes, I know, none of my so called TIA's have been over in a day.
Aim for a higher INR than 3.0! That is too low. If you have symptoms you know your blood is too thick.
It is a pity that there is not a nationwide protocol when it comes to testing INRs and wether is a nurse led clinic with coagucheck or venous sample at GP or wherever.
It took some time to get used to the nurse led clinic but three years later I don’t have any issues, the nurses are very good and will always discuss dosage etc.
J
Yes, it saddens me that it all depends where you live. There is still a lack of APS knowledge and support. The ccg opinion seemed to be well AF patients do well with our system. They were a bit aghast when I explained APS in more detail and how it is totally different to AF even though we may be on warfarin as well.
I self test because my inr can plummet rapidly, my speech slurs and face drops with right side weakness. Testing usually confirms whether it is low enough for me to have to inject clexane. Within an hour of clexane I am usually feeling better and my speech returns.
Thank you for replying.
Hi
I live in Cheshire and have been self managing (testing and dosing) for over three years.
It depends where in Cheshire you are as there’s still different CCGs within the county.
You can direct message me if you would like.
Kelly 🇬🇧
I self test sans self dose as where I am in Essex nobody seemed to have a clue. My first Doctors left it with the practice nurse but then wouldn’t get a call about my dosage as they had to wait for a doctor. I eventually got called in to see a doctor and they admitted they didn’t have a clue and were working off of the computer programme that goes with the doctors Coagucheck machine. I explained it was dangerous to my health to self test on a Friday and not get a call back till Monday or Tuesday. I then informed them I would not call in would self test and self regulate but would attend once a month for a check. This carried on for a few months until even the practice nurses gave up! When we moved and changed doctors I went in for my first meeting with a doctor explained what I was doing and as he said you know a lot more about this than me keep going. I am not so sure Guys Hospital is that happy with me but will wait for the first haemo appointment with them!
Thank you, this sounds good. I think I need to say this is what I do rather ask can I do this!
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