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hazel595
05-14-2005, 01:37 PM
Hi after my little disagreement with my anti coag clinic I got in touch with Roche and explained everthing to them.

The story was that in February I did a self test INR and went to the hospital to have my monthly bloods done together with a venous INR (good way of keeping check on my coaguchek monitor).

The anti coag clinic rang me that night and said I had to miss two nights warfarin as my INR was 5.8 I told the clinic that my self test was 3.8 and I was absolutley surprised. I explained that if my INR is high I get a headache and had no headache and no other symptoms present. They insisted my coaguchek machine was faulty however I disagreed and though "stuff you mate" and continued taking my normal dose for that night.

The following day I rang Roche and explained the situation and they advised me to do a control test which I had already done and it was fine. They also advised me to check someone elses blood that was not on warfarin. I checked my hubby and my neighbours blood and both were the ratio they were supposed to be (0.8 ~1.1).

That day I had another phone call from the anticoag sister to make sure I had missed my dose and she said she wanted me to go in for another test and to take my coaguchek with me.

Hmmmm i thought if she had bothered to phone me again maybe my coaguchek was faulty but it still didn't alter the fact that I had no headache. Anyway I thought I had better miss that evenings warfarin dose.

I went in a few days later and had a capillary test on the clinic and my coag monitor and both results came out at 2.4 (low because I had missed a dose) and I also a venous test and waited for the venous result to come back - the result was 3.1 still 0.7 difference. I knew my INR was low because I had a headache from **** and my right side down body was tingly and numb in parts.

The coag clinic told me my monitor was unreliable and that I was no longer to phone results in but had to go to the clinic each time.

I went to see my GP as the coauchek cost me ?399 and I wasn't convinced it was my machine that was wrong. My GP agreed with me and wrote to the heamotology consultant and again I contacted Roche. I must say that Roche have been marvelous in their support and after care and I have had the coaguchek for nearly two years

Roche sent me a brand new monitor out on loan and gave me a list of tests to do and I must admit my head completely went and I had a panic attack. My sister came with me to the hospital and the Anti coag Sister although not happy did help me to do a control check on the loan, mine and the hospital machine before doing a capillary test on each one.

The results were all the same within 0.1 and in my eyes proving that there is nothing wrong with my coaguchek monitor and the Sister said she couldn't explain why there had been differences with the lab and my monitor results.

The reply from the Anit coag clinic to the letter my GP sent to the heamotologist read

QUOTE ?I think it is inevitable when different blood samples are tested on different occasions by different methodologies that the results will differ somewhat? UNQOTE.

Further in the letter the heamotologist said

QUOTE ?Having said all that, it is difficult to explain the discrepant results between her Coaguchek and our Pathology machine and I suppose the simple answer is the problem would not arise if she is tested only here at the Hospital? UNQUOTE.

I can only assume that although the hospital has a Coaguchek he doesn?t fully understand my circumstances and maybe they are not used to patients arguing that it could be there pathology lab equipment at fault. I am certain that they did something in February to their path lab machine which made the results come out incorrect.

It doesn?t really matter as I am happy that my machine is working correctly and after having a venous sample on Monday 9th May 2005 at the Pathology lab and doing a capillary test on both loan and my own machine immediately before the venous one I waited in anticipation for the venous result.


Monday 9th May 2005
Results:
Own Coag: Capillary 3.1
Loan Coag: Capillary 3.0
Path Lab: Venous 3.3

What further proof do I need that in February it was their result of 5.8 that was incorrect when I was convinced that my machine reading of 3.8 was correct.

Sorry Gals that this is so long winded but I hope it benefits those of you with a Roche self test monitor and just knowing that if you have any problems Roche bend over backwards to help.

Hospital path lab result can be wrong so go with how your body feels as well as what the results are.

hugs Hazel xxxxxxx

Clare.T
05-19-2005, 01:43 PM
Thank you very much Hazel for this very interesting account ! I am sure it will be useful to many. What a hassle ........! You did well to cope successfully with it all.

Did you ever read that study done by St Thomas's Lupus Unit how much money the NHS would be saved by providing the Coaguchecks to APS patients compared with the cost of hospital testing. They cost a lot for the individual, about ?350 last I heard.
Why should it be so hard to have reasonable discussions, surely the health of the individual is what matters not sticking obstinately to defending their machine's accuracy. It could be life or death couldn't it.

In Tuesday's ( May 17,2005) Daily Telegraph Health and Wellbeing section in Doctor's Diary, Dr James Le Fanu writes

" ...................A doctor writes [ in a recent medical journal enquiry] that one of his patients. a woman in her late seventies taking the blood thinning drug Warfarin, was intending to travel round the world.
How could she monitor the drug's effects while she was "on the road" ?

There is , apparently a self monitoring device. produced by Roche that is 'at least as good as, if not better than regular hospital tests at keeping the blood within the intended therapeutic range. Further tips from elderly globetrotters would be much appreciated "

:)

All the best Hazel

Clare

hazel595
05-20-2005, 12:46 AM
Hi Teri
no I never got an answer on that one but how could they answer when they knew it was the callibration they did in February on the lab machine (I have since found out) that was done incorrectly. My Monitor was never at fault and the last venous test I had in May was spot on to my machine and the machine that Roche sent out to me on loan.

I can only assume that because of my letters they did a re callibration and that made the fault disappear sometimes they use a different reagent so maybe they changed back to the same brand they had befor the fiasco in February.

Well at least I can now phone in my INR results as they said my moniter 'must of righted itself'. What a load of old tosh but as long as I can phone in now who cares.

Roche have a website just put Roche Diagnostics into google and you should get the site. If you can't find it and are interested in having one email me and I will get the address for you for you let me know if you are in UK or USA xxxxhazel

hazel595
05-20-2005, 12:59 AM
Hi Clare thanks,

I haven't read the study done by St Thomas Unit about money the NHS would save but I do know how much I have saved them as my average visits to the GP were 3 times a week and each time a double appointment sometimes a longer appointment as he could never get a vein and often had to draw blood from my groin. My GP was the one that encouraged me to buy the machine and now I only need an appointment once a month.

When I bought my Roche Monitor it was ?399 but now you can buy it over a longer period instead of paying all up front so it makes it easier if on a low income. The Strips can be got on prescription as well as the needles for the pen but the controls have to be purchased off Roche.

A control test needs to be done every time you open a new box of strips just to test the strips are OK.

As for them defending their machines accuracy - well I cannot afford for it to be wrong the last time my INR dropped to 1.7 I had a stroke and do not want another one. Keeping my INR stable has also stopped the regular TIA's I was having. So yes for me could be life or death issue.

Thanks for the quote out of the Tuesday's Daily Telegraph health and wellbeing section. I will make a note of it for any future correspondence I may have with the anticoag clinic.

xxxhazel

Raglet
05-20-2005, 11:58 AM
sounds like your hospital changed the reagent used in the test. With most people this doesn't matter in the slightest, but for those of us with aps (and particularly if we have the lupus anticoagulant) we are particularly reactive to the particular reagent used. Testing the same sample with two different reagents can give widely differing results. But if you ask the staff in the lab if they have changed reagents lately, they always look at you blankly. My personal theory is that they just buy which ever one is on special.

So I figure that I am safer home testing with my coaguchek as I am using the same test strips each time.

I totally agree with that symptom matching inr thing - i can tell mine is getting too high right now (I have been on antibiotics) because I am getting that not quite migraine headache that doesn't respond to anything, and that is a sure sign of a high inr for me. Time to test.

I do know about the need for accurate results - i had a stroke 6 months ago at an inr of 2.9 (according to a whole blood test at home plus a serum test when I was admitted to hospital), so I need to have very tight control over my inr.

home testing works great for me !

raglet

rsmurphy
05-21-2005, 03:26 PM
Hi! Hazel and Everybody,
Good for you for sticking to your guns! There are alot of variables in INR testing, and changes in method, reagent or tech, or even poor technique by the person actually drawing the blood can cause a value to be inaccurate. Here in NY, INR "point of site" testing is growing in popularity by leaps and bounds. Our hospital and local nursing home just purchased several machines, and all the nurses were required to learn to use it and were surprised by how simple and accurate it was. Policies are written to reflect the importance of control checking to ensure accuracy, and a recheck with another machine or by our hospital lab if there is a discrepancy from the patient's norm. I applaud your courage! :D sue.

AnM
05-23-2005, 12:20 PM
Teri,

I would check w/ your Rheumy, n if (s)he doesn't know how, then ask for a referral to a Hemo. that knows about APS. They will be able to assist, or give the info. to your internist, in getting it.

At least, In the US, I do know, that they say most insurances will cover it. So, u can talk it over w/ the doc. n they can go about going through the ins. to get it. Giving the need of necessity n such. & hopefully your ins. will cover, n u won't have to buy it out of pocket.

& when that goes through some1 should come to u and go over it w/ u at your home, n such.

Good luck, n take care.

Hazel, I'm sorry u had to got through that, very frustrating. I'm glad Roche was very helpful, n it all got settled.

Take care,
Alicia :coffee: :flowers: