Worried about time left inbetween Tests!

[The Milkman]

Hi Everyone,

Long time - no post!

Just curious - I had a St Jude Aortic valve and aortic root replacement ( 12 months ago tomorrow (12th) ), I am doing great with no complications or after effects.

My INR is tested at the local NHS clinic and seems to be very stable which is good - however I started to think about the time in between tests & what my INR might be doing / fluctuating ?

Here are my last results and dates (INR range required 2.0 - 3.0)

22/07/09 - 2.1
08/09/09 - 2.3
03/11/09 - 2.1

My next INR test is scheduled for tomorrow the 12th - this is however 11 weeks since my last one.

Is this length of time inbetween tests normal? Seems a long time to me ?

Many thanks

Andy C

 

[Ross]

No that is not normal. 30 days max between tests. Your pretty rock solid stable, though I'd prefer to see you a little higher then just over the threshold.

 

[dick0236]

I would be uncomfortable going +/- two months between testing....especially if you intend to stay at the low end of your INR range. You are not leaving much for a margin of error....and strokes are no fun.

I agree that 30 days would be OK so long as you maintain a stable INR.

 

[Bina]

Monthly testing is quite common, and I did that for 18 months being perfectly stable until I bought a home tester.
Going longer than one month is really not of any benefit unless you are having vein draws and your veins are suffering ?

 

[The Milkman]

Thanks for the replies.

As a matter of interest - I have no control (bar shouting!) at when and how often the tests are done. In the UK, these are determined and decided by the NHS anticougulation clinic,

Andy

 

[catwoman]

Thanks for the replies.

As a matter of interest - I have no control (bar shouting!) at when and how often the tests are done. In the UK, these are determined and decided by the NHS anticougulation clinic,

Andy

I don't mean to be rude, Andy -- but does the NHS anticoagulation clinic also decide when mechanical heart valvers can have strokes, due to going too long between tests? I wouldn't be comfortable going that long between tests, and I don't think many here would, either.

Perhaps if you ask to speak to a supervisor at the clinic and ask for the rationale of long intervals between tests -- other than trying to save money -- it might help.

 

[Bina]

Andy, I am sure that if your INR wasn't so stable that you would have tests more frequently,
but honestly, even with being rock steady, I get nervous after 4 weeks without a test.

 

[Jkm7]

If they refuse to test you more often, perhaps you could discuss with them if it would be a good idea to tick up your dosage slightly to bring your INR up just a bit. You are riding at the low end of your range. Maybe you'd have more peace of mind slightly higher?

 

[Cris N]

I know we have several UK members - would be interesting to find out how often NHS lets them test. IMO your clinic is playing "Russian Roulette" with your life by not testing more often - especially being at the bottom of your range. If they refuse to test more often I would aim for the mid to upper part of the range.

 

[Ross]

I know we have several UK members - would be interesting to find out how often NHS lets them test. IMO your clinic is playing "Russian Roulette" with your life by not testing more often - especially being at the bottom of your range. If they refuse to test more often I would aim for the mid to upper part of the range.

Exactly. If it were me, I'd bump up my dose by at least 5% for the week.

 

[Herb M]

I think 6 weeks is fine for those who have a fairly steady INR.

Most people with an Aortic valve use 2.5-3.5 as the acceptable range.

 

[Dina]

And here I thought one should test twice a month--maybe its just cause I was a problem case. In your case,for the time being anyway,make sure and keep your diet and activities steady and try not to make any sudden changes.

Good luck with talking to your clinic-Dina

 

[art]

Hi Everyone,

Long time - no post!

Just curious - I had a St Jude Aortic valve and aortic root replacement ( 12 months ago tomorrow (12th) ), I am doing great with no complications or after effects.

My INR is tested at the local NHS clinic and seems to be very stable which is good - however I started to think about the time in between tests & what my INR might be doing / fluctuating ?

Here are my last results and dates (INR range required 2.0 - 3.0)

22/07/09 - 2.1
08/09/09 - 2.3
03/11/09 - 2.1

My range is 2.5 -3.5
But my Doc. likes it in the top end i.e. 3+
I always up my dose if I am around 2.5

 

[The Milkman]

Hi Everyone,

Thanks for all your support and advice - I have just had my inr checked today (will have to wait 3 - 4 days for the results) - will post my INR when I find it out. I might even consider buying a home anticougulant monitor!

As posted in the Surgical Anniversaries Section:-

Well 12 months today, I was being wheeled down for surgery - can't believe it has passed so quickly!

Thanks to all on this forum for making me feel at 'home' and giving me confidence and courage in the early days.

Andy C

 

[Ross]

If you can afford too, home testing is the way to go. You really need the results the same day your tested, 3 or 4 days from now doesn't mean a thing. Kills me, they know this, so why do they do it?

Congrats on your one year! I'm trying to stay only in this forum, so I don't post in others if I can help it now.

 

[sue943]

Although not the UK per se our medical staff is mostly trained there and have similar things in place. The longest I have gone is a couple of months, they do permit some people to go as long as three months, my brother-in-law is in the UK and goes three months.

The INR has to be rock steady to be left that long, any fluctuations and it is back to weekly, two-weekly etc. I just checked my INR Record book and I had a run of four 8 weeks following on from a run of six weekly tests. Then I dropped to just under my lower level and was immediately put down to weekly until it stabilised again. Mostly I go about three-weekly.

I asked about my own machine and the hospital said that would be fine, except I would have to pay for it and the supplies and the supplies are not cheap.

 

[ALCapshaw2]

I think 6 weeks is fine for those who have a fairly steady INR.

Most people with an Aortic valve use 2.5-3.5 as the acceptable range.

MY understanding for recommended ranges is

2.0 to 3.0 for Mechanical AORTIC Valves with NO additional risk factors for stroke.

2.5 to 3.5 for Mechanical AORTIC Valves WITH additional risk factors for stroke such as a previous stroke, TIA's, etc.

2.5 to 3.5 for Mechanical MITRAL Valves with NO additional risk factors for stroke.

3.0 to 4.0 for Mechanical MITRAL Valves WITH additional risk factors for stroke such as a previous stroke, TIA's, etc.

'AL Capshaw'

 

[olefin]

My next INR test is scheduled for tomorrow the 12th - this is however 11 weeks since my last one.

Is this length of time inbetween tests normal? Seems a long time to me ?
Andy C

Seems unreal to me. I've always been tested at least monthly. If out of control, retest within a week. My second cardiologist wanted to go longer between test, I refused.

My control has always been 2.5 to 3.5. I prefer it near 3.5. My first cardiologist said not to worry as long as it was 2.5 to 4.5.
Looking back at my records, back years ago I went 22 months without needing a dosage change. As I've got older my INR seems to bounce around and dosage changes are needed more frequent. Since home testing, I test every week.

 

[Ross]

It seems unreal to me also because mine can go way out in one months time, but hey, things are different across the pond as we see.

 

[Bina]

Not unreal at all....
I am another one who almost never needs a dose change...had only one dose change last year.
It probably helps that we cook all our own food, no alcohol, no med changes, etc.