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Sticky Blood-Hughes Syndrome Support
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Venous or finger testing

Hi any help would be great I am 36 and been having venous bloods taken from me once or twice a week for the last 16 yrs for my INR , this is getting very unpleasant for me because going into the same place every time and going through scar tissue, my INR rage for my warfarin 3.5-4.5 so always believed it was only suitable for those with lower INR ? Any one with higher INR on finger testing

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Many on here have a higher INR range and finger test I believe. Lure2 maybe you could help here?

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my range is 4.0-4.5 and I self test and self manage my warfarin with finger test.

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Hi Tucson,

Do I understand you right that you have now, after 16 years on venous testing, starting selftesting or are you going to start selftesting?

Anyway I have selftested 5 years (every second day at the moment) . I have one of the antibodies they test to have a diagnose of HS/APS, that is Lupus Anticoagulant.

If you have that antibody in your blood it can be more difficult to get the INR on "spot". You have to be very careful and know what you eat and drink and exercise and what drugs you take etc etc. As with a normal vein-testing but more "severe" (find the wrong words sometimes as this is not my native tongue language which is Swedish).

Anyway, as you know, CONSTANCY is the most important thing for us whether we are selftesting or not.

As I am positive to Lupus Anticoagulant my bloodvalues differ between the vein- and the fingerprick-value. Perhaps it does that also with others but it is more usual with those who has got a positive Lupus Anticoagulant. I know that.

As I am triple-positive with high titres also it may be the reason why it is quite a job to keep my blood in the right therapeutic level which is an INR between 3.5 - 4.0 I feel good with an INR of 4. I have a Haeparin (Fragmin)-shot to take when my INR goes under my therapeutic level.

I have the best help from my Specialist and the nurses who know me now. Without them it would be more difficult. We must feel the cooperation 100 % as we can not fix this ourselves I have noticed.

Now, if I have an INR at the lab at the hospital in the vein, with an INR of 4.0 I had earlier, when I took the bloodtest in the finger with the CoaguChek XS , an INR of 5.0. A difference of 1.0. So I have to reduce the home-number with 1.0 to get the REAL value that counts. It is important though, that the DIFFERENCE between the two values, are always THE SAME otherwise it will be almost impossible as you will not know "where you are".

Therefor you have to do a lot of double-test the same day (I do it within 3 hours) when you start selftesting to find out if it will be ok to continue.

OBS! It is the vein-value at the hospitallab that counts!!!! Very important to know!

That is me in person and I can not say anyone else have the same difference but I know that my Hematologist says it is natural to have a higher INR with the CoaguChek XS and the teststrip in the finger as it has an OTHER REAGENS.

Do not ask me about that as I can not explain. I have just a paper from my Hematologist where she says why I am higher in the finger with the strip. Most people find this very difficult to understand.

I hope I have helped you a little and I hope you did understand what I wanted to tell you. You may ask me agian if I can answer. I hope you still wants to selftest!

Best wishes from Kerstin in Stockholm

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Hi mgammon,

I did a mistake and answered on the name of "Tucson". I read your post and the answer was meant for you of course. Sorry for this!

Kerstin

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No I was replying to mgammon

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Yes I self test. My INR target is 4. It’s difficult as my machine isn’t always accurate but I go in for vein draws when it’s very out of range.

Some Drs welcome you self testing and prescribe the test strips, whereas others fight it to the bitter end!

As long as you double test with the vein and know there can be a difference then you could possibly be ok like many of us with high targets.

Good luck x

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I am on venous blood testing my range is 3 - 4 target 3.5 I am seen by my local specialists and in London, I find it very interesting that a lot of folk on here are a higher range? I am discrepant from the finger prick inr and have been a lot more stable since, when at my range and was tested by the finger prick testing at my gps...found I couldn't be tested by rhe on screen dosing to high range for the automated screen...so the nurse would ask the random gps in the surgery....who are not specialist warfarin nurses...was very unstable..although it is a nuisance going to the hospital every week I feel a lot more safe. However my heamotologist would prefer that I go twice a week. I have APS and sneddons and have had multiple strokes.

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I started with a target of 3-4 but was still getting severe symptoms around 3.5 so my Drs moved my target to 4 which seems to be a good place for me (when I can stay in range!) if I drop slightly I get sick again so they’re now looking into immunosuppression for me as well (im already on hydroxychloroquine but now looking at azathioprine)

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Hiya. I always went to the local hospital twice a week for blood tests as I have the lupus anticoagulant. I know just what you mean about it going through scar tissue and it hurts!! So, after conversations with Anticoag nurse I asked my go would they prescribe the strips and they said yes, I purchased the machine and it’s made such a difference. I usually check it twice a week but have done it every day when I was on steroids. Like Kerstin my test range is higher than vein test but I record each one and can compare. The higher the finger the prick, the higher the range is. Eg if my finger prick is 5.2 then my vein is 1.0 lower at 4.2. Spot on for me to feel great. But if finger prick is say, 3.7 my vein test will be 3.2 or 3.3. Then I have to inject heparin as if I drop below 3.5 I often then have a TIA. I still have a vein test every week so clinic doses me, but I do alter dosage if needed. Hope this isn’t too confusing, it takes a while to get hang of it but makes you feel more in control. x

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I've self tested for a year now with an inr range of 3-4. I test weekly unless I feel my diet or stress levels has changed significantly. I send blood test results in fortnightly to the clinic at UCLH. My inr fluctuates through the range but rarely goes out of range.

I went to self testing when I returned home twice from a holiday abroad with a venous result of 5. This worried me as I had no idea at what point I had become so high.

My local clinic would not accept the coagucheck readings so I eventually switched to UCLH under Dr Cohens team and have much better control over my health now

I have just switched to self adjustment of dose where I send in my inr result and intended regime and they give me authorisation to go ahead.

I am however a pharmacist with previous training in running a warfarin clinic. I have controlled my own dose on holiday when I could not get hold of the clinic and with this evidence they allowed me to switch.

My inr differs minimally from the venous result but I am not lupus positive. This does affect the strips accuracy.

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Good for you! You have been running a warfarin clinic before!! Also not positive to LA. Your INR differs just a little because you are not Lupus Anticoagulant-positive.

Kerstin in Stockholm

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Kristen I am aware that my professional knowledge and simple form of APS make my condition easier to manage and control. However I was just trying to answer the use of test strips in my situation.

Sorry if this information upset you. It has taken a long journey of TIA, miscarriages and fights with local haematology to get me to this position.

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Hi Yissica,

Oh no, it did not upset me at all. Why did you think that?

This must have been a misunderstanding as to our different languages and also perhaps I did not get what UCLH is and how your situation with teststips worked in daily life. Does not matter as to me as long as all the other members will learn something.

Kerstin

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