Friday, May 30, 2008

Accurate 66% of the time?

Normally I wouldn't copy and paste like this, but I've been doing a little "light reading" lately and what I'm reading is absolutely absurd!!

Let's take example #1 for instance:
You are welcome to your opinion about the accuracy of the machines but I have not seen any study or data that indicates it is less accurate than a lab test? I think it is just the opposite and more accurate than many lab tests. For the lab test you have the draw, the handling, the storage, the transportation, a time lag that can be up to several days before the test is really done and all of these can contribute to a wrong result from the test.
Different tests (reagents at least) are used in different labs. With the machine, the blood is always fresh, everything is automatic and there is almost no chance for an inaccurate test. In addition you don't get collapsed veins or someone jabbing you and moving the needle around trying to find a vein. Add in the ease of not needing to even leave the room, getting the results in minutes, available at any time day or night and even on holidays and I can understand why someone might want to use a machine. The machines in Doctors offices and some labs are the same machine used at home.
BTW, I would suggest anyone who gets a strange reading, high or low, from a lab (or a machine) should have the test repeated as labs do make mistakes and we need to be certain ours are right before we make any drastic changes. This is much easier to do if you have a machine.
Now if we break this down a bit and look at the facts. The companies that make these home testing machines put disclaimers in their package inserts about APS patients and possible inaccuracies. No data? There's data from the company who make the machines.

True that when the blood is tested with the machine it's fresh. There are no handling issues and yeah, it's a lot more convenient. convenience worth the risks that possibly having a WRONG reading will cause?

What happens when an APS patient's INR is too high? They could have a bleed...which, although may not be life threatening, could be very dangerous. What happens when an INR patient's INR is too low? They could have a clot. Maybe it will be "just" a DVT....hmm, but couldn't a DVT lead to a PE...and couldn't the clot be a stroke instead of a DVT?

So convenience basically is worth the risks of an inaccurate test and a possible bleed/clot?

I guess it is for some people.

Another example to consider:
I will say that I was told by others with APS that it is dangerous for us to use. I saw the success that so many in the UK are having, so I asked my hemo (after I found a good one that speaks frankly with me). He said that if you have the intelligence to calibrate the machine and you can learn through your doctors guidance to understand how to make simple adjustments and know when there is an emergency... He believes the machines are very helpful. He said that given the patient more control over his/her healthcare is beneficial in many ways. When I asked specifically about the things I read about APS patients, he said it was "nosense"
and maybe a "scare tactic of someone that likes drama" (His words, not mine). He explained that if you get a false high reading on the home machine, you are going to get a false high at the lab.
So...if a patient has the intelligence to calibrate the machine then they should be all set? Well, with simple adjustments and such. So what would be the reason that an office or clinic's machine would give a false reading? Perhaps the nurse or whoever in the medical field working in the office/clinic wasn't "intelligent" enough to calibrate and adjust the machine so the reading wouldn't be inaccurate. I'd certainly trust a nurse more than myself...and don't we have a story about someone who's CLINIC reading was off with the finger stick machine?

And remember we're not only talking about false HIGH readings, but also false LOW readings. Personally, the low ones would scare me more than a too high reading.

On to my third example:
I would never recomend one of these machines to a person who was permanantly positive for LA as the machine would just not worg for 33% of them (the other 66.6% would still be OK, but the constant worry of a possibility of a false high would be too much to bear. For the vast masjority of patients these machines are helping them in their daily control of the disease and helping them keep complete records to share with others on what effects their day to day INR levels.
APS antibodies tend to wax and wane. Basically, you may be positive for the LA one month and not be the next...or maybe you've have 15 tests and been positive for it once...this does happen in APS patients.

33% with a positive LA may have inaccurate readings. Let's break this down a bit. If you have a positive LA and you get your INR drawn 90 times with a finger stick machine, 30 of those have the potential of being inaccurate. Do you know when those 30 times are going to happen? Can you guess or determine when by how you're feeling on any given day? Should you have to guess at all?

Would you buy a computer that worked 66% of the time? How about a car? Would you want your electricity or heat to only work 66% of the time?

Would you pick a doctor who misdiagnosed people 33% of the time?

I don't me, the proof is in black and white. The data is in black and white. Maybe there's not an official "study" but there is literature out there.

Educate yourself before you buy into this INR machine business. Convenience isn't always the "best" way.

Let's also consider this: the word "may" is used a lot in these types of posts. Basically, it's used to cover the poster's ass. And yes I know, I use it too...but think about it:
  • Stool softeners "may" cause diarrhea.
  • Condoms "may" stop the transmission of STDs.
Don't take MY word for it...after all, I'm just someone who's using "scare tactics" to stir up "drama"....when actually, I'm only doing that 66% of the time. *insert eyeroll here*

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My goal is to educate APS patients on long term coumadin or warfarin about the possible dangers of using, and relying on Home (finger stick) INR machines to test their INR. Nothing more, nothing less. **I am not affiliated with any APS group, but a member of many. I am just trying to educate people about these machines.**
Disclaimer: This blog was created to educate APS patients about Home INR and finger stick machines. The posts here are strictly the opinion of the author(s) and links are provided where appropriate. I am not a doctor.

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