Mini stoke at 2.1 INR. Wth:(

[LadyChicken]

Who has a stroke at 34 years of age?? This girl! Booooo on that
How often does everyone with a new mechanical valve get their INR checked? I've always felt comfortable with going 48 hours, but two weeks ago my pharmacist convinced me (by making me feel silly) to come in once a week. Well, on dat 7 I had a stroke. They tested me and I was at 2.1. I feel best at around 3-3.5 because it's a brand new valve and I'm told it' better to be closer to 3.5 than 2.5. I TOLD this to my pharmacist (Who checks my INR and sends results to my doctor). So frustrated.

 

[dornole]

Sorry to hear

 

[dick0236]

Who has a stroke at 34 years of age??

It happens......I had my "one and only stroke" at 38. At 2.1 you would not expect a stroke. Has it been confirmed by a Cardio? Do you have any after effects of the event. Maybe it was a TIA.....they are reasonably common and can occur regardless of INR but they seldom cause after effects. I agree with your pharmacist.....testing every 48 hours, if you have been reasonably stable, is unnecessary.

PS, mine was a stroke, caused almost certainly, by a low INR (it was in 1974 and long before the INR system was introduced). I had gone 4 to 5 days without warfarin and am reasonably sure my INR would have been below 1.5. It caused permanent 50% blindness. If you did suffer a stroke and have no residual affects....count yourself very lucky.

 

[Superman]

Why am I hearing Crocodile Dundee?

"That's not a stroke. That's a stroke."

But seriously, to the OP - once a week, if you're stable, should be more than sufficient. In the days of lab draws, once a month was protocal.

 

[pellicle]

Hi LadyChicken

Long time no see , I'm sorry to see you back with an issue.

Firstly like others I'll also ask for clarification on what is a "mini stroke" others have mentioned a TIA

I suggest you read a little on what a TIA is:
https://en.wikipedia.org/wiki/Transient_ischemic_attack

How often does everyone with a new mechanical valve get their INR checked?

myself I echo the views above that weekly is pretty much "on top of things" ... I wondered if it was a mistype when I read 48 hours. I agree with the views of Dick and Superman that that is more often than needed. I only do such when I'm doing an experiment and wish to clarify that my INR data model works

but two weeks ago my pharmacist convinced me (by making me feel silly) to come in once a week. Well, on dat 7 I had a stroke.They tested me and I was at 2.1

what was your INR earlier than that?

. I feel best at around 3-3.5 because it's a brand new valve and I'm told it' better to be closer to 3.5 than 2.5. I TOLD this to my pharmacist (Who checks my INR and sends results to my doctor). So frustrated.

well INR is of course an averages thing, meaning that for "most people" its one thing, but for you it may be more. You may also have other issues which complicate things. To my mind there is nothing harmful about being INR=3

Your BIO hasn't got much information, but I'll assume that (cos I can't remember your posts) that you have a modern mechanical bi-leaflet valve. IF that is your ONLY indicator for INR then my surgeon prefers me to be between 2.2 and 3.0 ... one could view that also as a target of 2.5

I would suggest you ask your doctor for a D-Dimer test (which looks for the signs of clotting) and begin seeing if you don't have some other issue that makes you more likely to get a clot (such as A-Fib).

By all means ask more questions here as it helps you to be a more informed patient and allows your medical team to plan treatment better.

Best Wishes

 

[pellicle]

PS:
as mentioned above INR is based on "averages" ... for instance:

• what is the average clotting time of a person who is not on warfarin.

This forms the basis for determining the INR, what it fails to take into account is what is YOUR normal clotting time (once called ProThrombin time)

It may be that your PT was longer than average and so an INR of 2.1 will be a more "clot prone" value than for someone who had a shorter than average PT

What was your dose before the clot?
What method was your pharmacist using to determine INR (finger prick, if so which machine)

All helpful information to answer your questions and avoid future problems

 

[Warrick]

We all feel for you immensely, very sad.
I definately agree that weekly is the best, but heck starting out I was testing twice weekly, if it gives you piece of mind then do what you thinks best until you are comfortable with all this. Clearly your management team need to take a good hard look at things, get all their sh*t in one sock and put things in place so this never ever happens again to you.

Its certainly the pitts you had a stroke but as said it seems there must be something more to it as 2.1 is considered in range for most of us, I was given conflicting ranges, INR2-3 on my release report. 2-2.5 from the hospital (the nurse was almost agressively specific when I said the pre-op nurse had said range 2-3). I've been as low as 1.5 when starting out with (mis)management from my GP, now DIY

My father (AVR) goes for monthly testing and has done for 30+ years, then you hear of the 3 monthly testers.... maybe ignorance is bliss until it goes wrong

the cliches (not in a bad way) such as it's your life (coaguchek adds I think) and you are the best advocate for your own health become your mantra when your in the health system machine

 

[user 16827]

I test once a week when everything is stable , if i've had a drop or rise for whatever reason i would go to 4 days
then back to 7 days once stable again.

 

[tom in MO]

Your INR range should be set by your cardio, surgeon and the valve manufacturer. Having the right INR range is not really something one "feels". Please make sure your information is coming from the best source.

I was not released from the hospital until my INR was in the range my surgeon wanted it to be. After release, my cardio made me go in to the hospital laboratory weekly for a blood draw, then every 2 weeks, and only after a few months was I allowed to home test. They wanted the accuracy of the INR taken from a blood draw and determined in the hospital laboratory. This is to make sure your body's response to the warfarin dose is stable.

Now I home test and call my INR into my cardio's office. They have nurse and physician INR specialists. For long term, I test every 3 weeks unless my INR is out of range, then 5-7 days until it settle in range for two readings, then every 10-14 days, if in range for 2 readings, then I can go every 3 weeks. I try to keep it between 2-3 weeks for routine testing.

 

[Dodger Fan]

I had a Transient Ischemic Attack (TIA) 10 days after OHS. I had just turned 38 years old. These are also referred to as a mini stroke or a warning stroke. An MRI confirmed that there was no damage caused. My symptoms were confusion and loss of short term memory for approximately 1 day followed by 11 more days in the hospital (8 in ICU). The neurosurgeon told me that the best test was an MRI. Unfortunately I had to wait 6+ weeks for my pacemaker leads to "heal in" before I could do the MRI.

I have not had any similar incidents since. My cardio surgeon set my range at 2-3. I feel the most confident when I am at 2.5, since it's right in the middle of the range. The surgeon said he considered as low as 1.8 "safe".

I test at home weekly with a Coaguchek XS. My INR trends down for several weeks. Then a slight adjustment sends it up for several weeks. I am usually in range but need slight adjustments. Last week I dropped to a 1.8 on my machine (1.5-1.6 in real life) and we adjusted my dose. I was back in range Saturday 2.4 on my machine (2.1-2.2 in real life). Just to keep things exciting I forgot to take my Saturday night dose. I discovered my mistake Sunday night when my Saturday pills were still in the pill box. Oops!

I agree that your INR range shouldn't be something you feel. You should be shooting to stay in the prescribed range and understand that you fluctuate within that range.

 

[LadyChicken]

Thanks for the replies!

I'm guess I'm not really sure if it was a stroke or TIA, but I like the sounds of TIA better lol. I did have an MRI and the doc said he could see the damage. But he said it was small, and the only part of me that's "not me" is my right hand. Can't write my name without it looking like my 8 year old wrote it lol. But I'm not about to complain about that, and I do feel lucky that nothing else happened.

I use coaguchek(at my pharmacy) as well as a blood lab in between finger prick checks and just to see if the machine is accurate.

@dick - did you know soon after that vision loss was permanent? And did it happen right away?

pellicle- you know a lot about this stuff! I should pop on here more often lol. My range was 2.5 to 3.5 but was sort of changed after the mishap. It' now suggested that I try to stay closest to 3.5 They also told me to start taking low dose aspirin (why wasn't I paired up with this before?). As for going once a week to be checked....ugh....im so paranoid now that I'm not sure I could go that long. For example, I went from 3.6 to 2.9 in roughly 72 hours last week with only a .5 dose decrease for 3 days. Pharmacist thought that was odd and even brought out another machine to be sure. Now, here's what's unsettling about that: I didn't eat anything vitamin K rich since the mishap. Not even lettuce which isn't even on the list. So, needless to say, it didn't help with the paranoia lol. As for a-fib, I've had just about every heart related test done on me in the last year, so id hope that they'd catch it if something was up.

Warrick- 100% peace of mind. I don't want to adjust my dose based on 48 hours, but just to see that number helps me sleep at night lol. And jeepers, it's scary to hear that a gp would mismanage it. Did you ever speak your mind to him/her?

Tom- that's the scary part. My cardiologist didn't even know I had a stroke or TIA until a few days ago when I called to reschedule the appointment I cancelled due to the stroke (happened a few hours before I was to see her). So clearly info is not being passed to the right people. The surgeon who did my surgery hasn't said anything either. His nurse called and scheduled the standard "let's see you 2.5 months after your surgery" appointment with the surgeon, but she was cheery and bubbly on the phone, so I don't think they know anything yet. Fun times.

dodger fan- jeeze, very happy to read that there was no damage done. 11 days is a long time in the hospital. Is it because they weren't sure if it was a stroke vs TIA? I was in for 3 days because the doc wasn't sure if it would move to another part of my brain. After the MRI verified the shenanigans, they did a dozen tests to see if I could walk and eat and then released me. What was your INR the day of the TIA?

 

[dick0236]

......... I did have an MRI and the doc said he could see the damage. But he said it was small,

.....@dick - did you know soon after that vision loss was permanent? And did it happen right away?

Yes, it did happen right away although it was the next day that my brain realized that my vision was "screwed up" when I could not read a newspaper. That happened over 40+ years ago and it has never gotten any worse.....or any better. You learn to accept and adjust. In the 1970s there was little the hospitals could do for post stroke treatment. I understand that that is no longer true and much can be done to minimize, or reverse, the damage caused by strokes.

I noticed that you are only about three months post surgery. I would make sure ALL of your docs know this has occurred because it seems very unusual that a stroke occurred at an INR above 2.......especially with the newer valves.

 

[Dodger Fan]

Thanks for the replies!

They also told me to start taking low dose aspirin (why wasn't I paired up with this before?).

dodger fan- jeeze, very happy to read that there was no damage done. 11 days is a long time in the hospital. Is it because they weren't sure if it was a stroke vs TIA? I was in for 3 days because the doc wasn't sure if it would move to another part of my brain. After the MRI verified the shenanigans, they did a dozen tests to see if I could walk and eat and then released me. What was your INR the day of the TIA?

I also take low dose aspirin. My cardiologist explained it this way: Warfarin slows clotting/ aspirin makes your blood cells more slippery. I never researched what he said, I just take the aspirin.

The reason I spent a long time in the hospital was that when they did the first CT scan of my brain, they thought I had a bleed on my pituitary gland. They told my wife that I would likely need brain surgery and that I could go blind or have a stroke. They couldn't verify with an MRI due to the new pacemaker. They took me off warfarin and put me on heparin via IV. I had CT scans every morning at pretty much the only time I seemed to fall asleep (3am!) so that the tests were ready for the doctor's rounds. The symptoms went away but the anomaly on my pituitary remained unchanged. Once they decided they were going to release me they kept me until my INR hit 2.0. It turns out it takes a lot of warfarin to get me there. My current dose is 8.75mg daily.

Once I did the MRI 6-8 weeks later, they determined I had a benign congenital cyst on my pituitary gland known as a Rathke's Cleft Cyst. I had an MRI a year later and it remained unchanged. My next MRI is in 2019. They determined that the cyst was an incidental finding and that I had actually had a TIA. The neurosurgeon said that if it ever becomes a problem, he'll just remove it through my nose. How comforting

I have no idea what my INR was. It was my third or fourth day taking warfarin at home.

 

[pellicle]

Hi

well there is plenty of good information above ... in particular Dick identifies well this important pair of points:

I noticed that you are only about three months post surgery. I would make sure ALL of your docs know this has occurred because it seems very unusual that a stroke occurred at an INR above 2.......especially with the newer valves.

on to what you say:

I'm guess I'm not really sure if it was a stroke or TIA, but I like the sounds of TIA better lol. I did have an MRI and the doc said he could see the damage.

so then, this is not a TIA but a small stroke ... to my understanding TIA does not leave any permanent damage. So this is quite serious and its important to now take this information (and experience) and look further into it.

As has been mentioned do not assume that your medical team know of this, do not assume the information has been passed along. I would get back on the phone to your cheery receptionist at your surgeon and inform her of you having had a stroke and request (specifically, don't assume) that she pass that on to the surgeon as a priority.

But he said it was small, and the only part of me that's "not me" is my right hand. Can't write my name without it looking like my 8 year old wrote it lol. But I'm not about to complain about that, and I do feel lucky that nothing else happened.

ok, that's an indicator right there ... this is serious but you have escaped with only small damage this time, its possible that with some rehab work you can regain some of that neural ability (perhaps even it will re-emerge with time as the brain does that).

I use coaguchek(at my pharmacy) as well as a blood lab in between finger prick checks and just to see if the machine is accurate.

Wait, OK, so you were having finger sticks every 2 days and vein draws in between? So how often were the vein draws?

My range was 2.5 to 3.5 but was sort of changed after the mishap.

Ok, that's an unusual range for a modern bileaflet valve for an Aortic position ... its high. Please confirm if you had an Aortic (not a Mitral) and confirm if there is any suggestion that you have Atrial Fibrilation

It' now suggested that I try to stay closest to 3.5

in light of the above I would concur ...

They also told me to start taking low dose aspirin (why wasn't I paired up with this before?).

I'm glad to hear that and also raises my eyebrow as to why you weren't on that before. Especially post surgery (I didn't realise that you were still only months out of surgery) I would be asking pointed questions of your surgeon and cardiologist as to why (and don't forget to tell them about that stroke too).

im so paranoid now that I'm not sure I could go that long. For example, I went from 3.6 to 2.9 in roughly 72 hours last week with only a .5 dose decrease for 3 days.

I understand being paranoid in your current situation. I believe that now it is of great importance that YOU document your INR yourself. Document this as at least the weekly read (preferably any reading) and document properly and accurately your dose. Food doesn't matter much.

I would arrange it in a table (even on paper, but a spread sheet is better) with a column for Date, Dose, INR. Let me know if you wish and I can assist you with setting that up on (for instance) google sheets. If you have a Gmail account (or an android phone) that will be the easiest and most reliable place to put it.

You now need to also ensure that you are 100% solid in taking your pills. You can always make mistakes so you need to now put in place (if you already haven't) a system of :

• pill box for your dose laid out for the week (I sort my pills on Sunday night as my box starts on Sunday) and I take my pills in the evening with dinner
• have an alarm on your phone for about that time as a double check
• have the pill box where you normally eat and check it in the morning to then triple check that you took them that night

Missing a dose by mistake is a classic reason why you would have a drop like that.

As for a-fib, I've had just about every heart related test done on me in the last year, so id hope that they'd catch it if something was up.

ask the question directly and specifically and ask what tests have been done to conclude that you don't ... it could be "occasional"

INR can change reasonably quickly and there are many myths out there which people chant like buddist monks like "INR won't change over a week" ... its a crock

The thing to do is to aim your INR for the middle of your range. To know that there is squiggle in the INR over time but more than 0.3 INR points per day is not likely without say ceasing your warfarin. If you have your INR aimed (for instance) at 3 then your INR would need to drop to 2.5 to be "on the edge" ... weekly tests will show this up.

Please Personal Message me if you wish to discuss any of this. I'm in Finland at the moment, but were I in Australia still (back in a few months) I'd be able to call you in the USA as part of my phone plan. I can use Skype or WhatsApp to chat if you like.

Best Wishes

 

[tom in MO]

LadyChicken, I'd make sure both your cardiologist and surgeon know about your stroke. Whoever treated you should have already informed them or told you to get in touch with both, particularly since you haven't had your post-surgery release. Who's managing your anti-coagulation therapy? Your heart doctors or the stroke doctor? They need to act in concert. My surgeon managed the anti-coagulation in the hospital, but upon release it was the cardiologist.

 

[ForeverThankful]

Hi LadyChicken!

I had a small stroke (not a TIA) 3 months post surgery and my INR was 2.1, very similar to you. The stroke I had didn't leave any serious damage other than a slight lack of coordination in my left hand and very slight weakness in my left foot. I will say this though, it was a frightening experience. Sorry to hear you had to go through it also.

My Cardiologist told me that very rarely a micro-clot can form on a valve or on grafting material during surgery and the micro-clot usually dislodges at about three months post-op and these clots usually cause only minor damage. My surgeon told me the same thing in much greater detail. Perhaps that's what happened in your case.

As for testing my INR, I have a Coaguchek XS and test weekly, at times even daily. I test as often as I need to in order to have piece of mind. I manage my own INR although I can call the INR managers at my cardiologist's office if I need to. I don't adjust my dose very often, only when neccesary and only by a very small amount at a time,

As far as my INR range, I keep it in the high 2's, I aim for 2.6 to 3.2

 

[Agian]

As far as my INR range, I keep it in the high 2's, I aim for 2.6 to 3.2

Me too. I try and sit between 2.8 and 3.5.
I've got an On-X btw.

No dietary modifications. Although, lettuce might drop it a bit, everything else is fine, even spinach. I don't and never ate kale.

Two Vitamin K2 supplements in the morning.

Peace of mind, as you say.