Freaked out by super low INR. Advice?

[Croc Hudson]

Hi there! Newbie here.

I had mitral valve replacement on 9th December and I have a mechanical valve which as we know, means I have to be on the warfarin.

My ideal range is between 3 and 4 and since I've been home and getting my blood tested and all that, I've been somewhere between 2.8 and 3.8 but yesterday I got a call from the anticoag clinic to tell me that my blood test from Friday had my INR at 1.3 which freaked me out. The nurse told me that I should take 7mg yesterday (which I did), 6 today and 5 tomorrow and then alternate between 5 and 6 daily until my next result. I've been reading stuff around here and it seems like some people who have really low INRs are getting heparin injections but the anticoag nurse never said anything about getting a heparin injection (I had them when I was in the hossie so I have had them), she just said, "we need to give you a boost of warfarin today so take 7mgs [etc, etc]."

I'm just wondering if anyone can give me a bit of advice. I've actually got my post-op with my surgeon tomorrow and am generally doing quite well but I'm just really concerned because to be honest, I really don't know what I'm doing. Unfortunately, in my area, there's not a whole lot of anticoag support. In fact, at my GP's surgery, I mentioned to them that I needed to get blood tests to monitor my INR and they didn't even know what INR was! They thought I was saying "iron"! So I got fed up with them and just kept ringing the hospital until I got through to the anticoag clinic. I swear to god so many medical professionals act like I'm speaking some kind of crazy space language when I ask them questions about my INR and that doesn't really fill me with a lot of confidence.

Any advice, help or reassurance would be greatly appreciated!

Thanks!

 

[kfay]

Croc, Hi and Welcome, I don't take coumadin now, but have been on it a couple of times in the past after surgery and after a couple of ablations. If I were in your shoes, I would certainly want some heparin shots until my INR came up. Others with much more experience will be along to give you their expert advice. It will probably be good for you to learn as much as you can about managing your own coumadin and even getting your own machine so you can check your own levels. Good luck to you.

Kim

 

[catwoman]

Croc:

How frequently has your INR been tested? Do you have a list of your daily dosages and tests? Post these and we'll predict what your dosage will probably end up being, when the dust settles.

Have you started/stopped any medications (Rxes and OTCs)? Are you using a 7-day pillbox so you can determine whether you've missed doses?

1.3 is not much above being un-anticoagulated. If I had a result of 1.3, I would retest (I have my own monitor). If I got similar results again, I'd look at my pillbox to make sure I had taken my doses.

The response at your GP's office is probably from non-medical professionals (i.e., a records clerk, receptionist, etc., someone who doesn't directly deal with INR tests or patients on warfarin,), rather than from a nurse or MD.

 

[Jailene777]

Ive been there too!!

Ive been there too!!

First of all! Congrats on your replacement! You're still recovering and getting accustomed to the bloodthinner. I'm 5 months post-op and I also have a mechanical valve. The first month or so I was also freaked out with my INR. I was stressed out with my coumadin clinic as if they weren't giving me the right dosage. But for the first few months it takes some time for it to get adjusted. Baby aspirin also works, in addition to your coumadin/warfarin therapy. I take it as well, my surgeon told me to take it daily with my warfarin. You also have to get adjusted to it in terms of eating. Foods high in vitamin K have properties that cause our blood to get thick. So if you've been chowing on broccoli or green leafy vegetables in larger amounts it could be the cause for your INR to be low. Don't stop eating your vegetables all together. Just have it in moderation, and your coumadin should be adjusted so that you can enjoy a salad once in a while. Don't worry my INR was 3.8 which was high. So guess what I started doing? Eating salads and having the warfarin adjusted by the clinic. Hope this helped. But your ok. Its good to be precautious. I've been 1. Something for a while before I got to my 2's and 3's. Take care.

Jailene

 

[Freddie]

Hi Croc and Welcome.
Your not alone in the way your feeling...I've been there too. In fact my cardiologist was so mad when I had a reading of 1.3 and wasn't given heparin after me pleading my case in the E.R. he said "it's pretty bad when the patient knows more than the emergency personal". For 3 days I took things slow so the new dosage would get into my system and so my HR wouldn't get to fast - did it help? I don't know, it's just what I did.

What are the chances of you missing a dose? A missed dose and cause a big drop in INR results.

Try this: http://www.pace-med-apps.com/CoumCalc.htm
it may help you to see if your anticoag clinic is on the ball or not.

Do your best to relax and what Catwoman has suggested would also be a great help.

 

[Protimenow]

Croc: It's good to have another member here. I've been on Warfarin for 19 years and have had some experience managing my own INR.

I'd leave the decision regarding heparin or not with a 1.3 up to a professional who has a good feel for INR management. I don't recall mine going that low recently (I think my bottom, recently, was 1.8 - but a few years ago, unmonitored, it may have dropped lower).

The thing about diet and activity is to be CONSISTENT. Greens that are high in Vitamin K WILL lower the INR, but there are positive benefits from having Vitamin K in your system - it's best to get your Vitamin K and just adjust the dose of Warfarin to take this into account. What you should try to avoid is having your greens irregularly. It's much easier to regulate your dose if you're not challenging your system by changing things. If you like salads or the green stuff like brocolli (that I really don't like), eat them regularly. When you're feeling stronger and start to exercise, do it regularly. The key, again, is consistency.

The advice that's been posted on this forum many times is 'dose your diet - don't diet your dose.' What this means is that you should eat what you want (consistently), and just adjust your dosage to bring you into the range you need.

Also -- I second the suggestion that you get your own meter and do your own testing. It sounds like it may be especially important for you if you can't find medical professionals who understand INR or INR management. If your hospital's anticoagulation clinic is inconvenient for you to get to -- or if they do blood draws (which can be a real pain for many people) -- it may be better for you to test at home (or wherever). Some insurances actually cover monitors and test strips - others are harder to convince. In my case, I bought my used meters on eBay (which is a source not always trusted by those on this forum, and is not endorsed by this forum). If you've got insurance, or the funds to get a meter, you should strongly consider it.

 

[dick0236]

If you have been in your range and suddenly got a 1.3, I would suspect:
a) a missed dose...or two
b) a bad test

The additional warfarin they have told you to take should raise your INR and keep you safe....but I would check it after several days to see where your INR is. If the 1.3 was the result of a bad test, you will go to the high side of your range. My experience is to make small changes to minimize the "roller-coaster" effect.

 

[Protimenow]

One minor thing about terminology. Coumadin/warfarin is referred to as a 'blood thinner.' It's not. I'm not sure who is responsible for originally describing it this way, but it makes people think in terms of blood viscosity (like a 30 weight oil is thicker than a 20 weight, or something like that). What warfarin does is effects the amount of time that it takes for the blood to clot. A high INR means that it takes more time to clot than a low INR. That's all. If your INR is low, your risk of a clot forming on the valve (or inside a chamber of your heart if you have atrial fibrillation, or in a deep leg vein if you have deep vein thrombosis) is higher than if your INR is in a recommended range. If your INR is WAY too high, you are at risk of internal bleeding. But, again, it has nothing to do with the THICKNESS of the blood.

Just FYI

 

[Bina]

Hi there! Newbie here.

I had mitral valve replacement on 9th December and I have a mechanical valve which as we know, means I have to be on the warfarin.

My ideal range is between 3 and 4 and since I've been home and getting my blood tested and all that, I've been somewhere between 2.8 and 3.8 but yesterday I got a call from the anticoag clinic to tell me that my blood test from Friday had my INR at 1.3 which freaked me out. The nurse told me that I should take 7mg yesterday (which I did), 6 today and 5 tomorrow and then alternate between 5 and 6 daily until my next result. I've been reading stuff around here and it seems like some people who have really low INRs are getting heparin injections but the anticoag nurse never said anything about getting a heparin injection (I had them when I was in the hossie so I have had them), she just said, "we need to give you a boost of warfarin today so take 7mgs [etc, etc]."

I'm just wondering if anyone can give me a bit of advice. I've actually got my post-op with my surgeon tomorrow and am generally doing quite well but I'm just really concerned because to be honest, I really don't know what I'm doing. Unfortunately, in my area, there's not a whole lot of anticoag support. In fact, at my GP's surgery, I mentioned to them that I needed to get blood tests to monitor my INR and they didn't even know what INR was! They thought I was saying "iron"! So I got fed up with them and just kept ringing the hospital until I got through to the anticoag clinic. I swear to god so many medical professionals act like I'm speaking some kind of crazy space language when I ask them questions about my INR and that doesn't really fill me with a lot of confidence.

Any advice, help or reassurance would be greatly appreciated!

Thanks!

Hello Croc and welcome.
You are only 2 months post op and need to be followed carefully. A low INR at this stage can be very dangerous as the stitching work on your valve is new and easily attracts particles and clots.

You MUST have your INR test results the SAME DAY. The 1.3 result could have been re-checked on Friday and Lovenox/heparin shots started Friday evening.

If your INR goes too low again, you know what to request and don't give in to office clerks who obviously don't know what they are talking about. Get your doctor on the phone or otherwise go to the hospital emerg for a shot.

Hopefully you have a little pillbox to load with your 7 days of pills to make sure that you don't forget a dose or double up a dose. Mark down your doses on a calendar as this info is very important to have available.
It will become very simple, but right now you need careful attention.

 

[Bina]

First of all! Congrats on your replacement! You're still recovering and getting accustomed to the bloodthinner. I'm 5 months post-op and I also have a mechanical valve. The first month or so I was also freaked out with my INR. I was stressed out with my coumadin clinic as if they weren't giving me the right dosage. But for the first few months it takes some time for it to get adjusted. Baby aspirin also works, in addition to your coumadin/warfarin therapy. I take it as well, my surgeon told me to take it daily with my warfarin. You also have to get adjusted to it in terms of eating. Foods high in vitamin K have properties that cause our blood to get thick. So if you've been chowing on broccoli or green leafy vegetables in larger amounts it could be the cause for your INR to be low. Don't stop eating your vegetables all together. Just have it in moderation, and your coumadin should be adjusted so that you can enjoy a salad once in a while. Don't worry my INR was 3.8 which was high. So guess what I started doing? Eating salads and having the warfarin adjusted by the clinic. Hope this helped. But your ok. Its good to be precautious. I've been 1. Something for a while before I got to my 2's and 3's. Take care.

Jailene

Hi Jailene, nice to meet you.
I should mention that baby aspirin is not an anti-coagulant, it works on the platelets in your blood making it a bit more "slippery". It is used often in conjunction with Coumadin/warfarin as an added benefit to avoid clots or stickiness in the blood.
Some people group all these meds into the "blood thinner" category, but they have their own specific functions.
Enjoy some salads and greens daily to keep your vitamin K levels stable and to benefit from good nutrition.

 

[normofthenorth]

+1 to the comments above. I would suspect that you should have injections of Lovenox or similar (low molecular-weight Heparin) while your INR is building up. There have been some rare cases or serious thrombosis ("thrown clots") while clot-prone people like us were building up their INR without the shots. The problems (admittedly rare) are caused by a weird "paradoxical" effect of Warfarin/Coumadin: In the first ~48 hours of W/C administration, it actually (and significantly) INCREASES the blood's tendency to form clots! You're not brand-new to W/C, but starting from INR=1.3 is pretty close to starting from scratch (=INR=1.0), so this probably applies to you.

If you're a techie, you may care about the mechanism: W/C inhibits multiple effects of Vitamin K, most of which promote clotting (so the W/C inhibits clotting) but some of which inhibit clotting (so the W/C promotes clotting). The different "factors" in the Vit. K have different half-lives in the body, do they're not all inhibited simultaneously. Perversely, the clot-inhibiting factors are inhibited by W/C almost immediately, while the others take a couple of days to be inhibited. So for those first ~2 days, the "new" W/C you've taken actually increases your risk -- unless you've also taken Lovenox or something similar to overcome that "paradoxical" effect.

That's why they gave you the shots in the hospital, and I THINK the best professionals would recommend a few days of shots now, too. (Just a medical opinion from a relatively well-informed medical amateur, of course.)

 

[AgilityDog]

FYi, the dose of lovenox for a mechanical valver is 1 mg per kg of body weight, every 12 hours.

I weigh 134 lbs and take 60 mg twice a day when I'm on it.

 

[Croc Hudson]

Wow! Ok, this is really good information! But it's scary because that was all yesterday and I've not had any heparin shots. I have my post op tomorrow with my surgeon and I'm going to bring it up with him first thing because most of you seem to be saying that I should be getting shots and now I'm properly worried. Although, the nurse at the anticoag clinic who I spoke to on the phone didn't say anything about heparin at all and she didn't seem freaked out and she deals with this stuff all the time. I'm just really scared of getting a clot.

I do eat a lot of spinach - maybe that is what caused the low reading? Also, this test was from a blood draw at the chemists, not a stick test at the hospital. I live in the UK so I am in the NHS so I don't know about getting my own machine but I will ask my GP if I can get a subsidised machine on the NHS. I hope I can because I looked it up and those things are expensive as hell!!

Can anyone tell me if they've had a really low INR and not had shots and been okay?

ETA: Thanks you guys for all your advice and for being so kind to me!

 

[Freddie]

Can anyone tell me if they've had a really low INR and not had shots and been okay?

ETA: Thanks you guys for all your advice and for being so kind to me!

I'd be one of those people Sir Croc Hudson - I didn't receive any shots, just took it easy and tried really hard not to panic when I had a reading of 1.3.
Keep in mind all this happened 2 years after my surgery.

Try asking your surgeon for a home monitor and see what he/she says. Do some research on the monitors and print off the information so you can show your Doctor(s) what your talking about....just in case.

 

[Croc Hudson]

I'd be one of those people Sir Croc Hudson - I didn't receive any shots, just took it easy and tried really hard not to panic when I had a reading of 1.3.
Keep in mind all this happened 2 years after my surgery.

Try asking your surgeon for a home monitor and see what he/she says. Do some research on the monitors and print off the information so you can show your Doctor(s) what your talking about....just in case.

Aw, thanks for the reassurance! Maybe it is worth mentioning home testing to my surgeon tomorrow at my post op. I don't want to bother him with non-surgical issues but it seems like this would be a concern. Also, when I go back to work, it's going to be a real ballache for me to take time off to go to the chemist to get my blood drawn.

The nurse I spoke to yesterday also said that I shouldn't be getting my blood drawn on a friday because they don't get the result until monday. It's kind of silly that I have to do it this way but that's the NHS for you. I'm not complaining at all, please don't get me wrong! It's just a strange system for something that is so important.

Oh and thanks for the suggestions of writing down my doses on a calendar! I am doing that now. I've never been in a position to have to closely monitor my medications and take them at the same time every day, etc, etc so I am gathering up all the tips I can get and I appreciate them! And I do have a seven day pill organiser thing, I just need to use it!

P.S. I'm a lady, just FYI. I know I have a masculine user name. Croc Hudson = LOOK! I MAKE JOKE! Funny isn't it?

 

[kfay]

Lady Croc...We have other members on here from the UK and I'm pretty sure some of them have mentioned having their own machines so hopefully they'll come along soon and tell you how they went about getting theirs. If I were you, I wouldn't hesitate mentioning home testing to your surgeon tomorrow. It's not a waste of his time, hopefully he'll be able to help you get the ball rolling.

Kim

 

[Freddie]

Here He, Here He......let it known to all fellow posters that Croc Hudson will now be known as Lady Croc :biggrin2::thumbup:

Also ask why you can't get your INR results the same day. It should only be a 3 hour test and someone should be able to phone you with the results the same day, that way if an adjustment needs to be done with your dosage it can be done ON THE SAME DAY as the blood draw. Wait 3 days for results and you could be back in this same boat....and we don't want that.

 

[Croc Hudson]

Hahaha! You guys are awesome! And if proof were needed of my LadyCroc-ness, it can be found in the photo thread!

I should go to sleep now because it's 3 something in the morning but after I see the surgeon tomorrow I shall report back on what he says.

Thanks again!

 

[Greg a]

Hi there! Newbie here.

I had mitral valve replacement on 9th December and I have a mechanical valve which as we know, means I have to be on the warfarin.

My ideal range is between 3 and 4 and since I've been home and getting my blood tested and all that, I've been somewhere between 2.8 and 3.8 but yesterday I got a call from the anticoag clinic to tell me that my blood test from Friday had my INR at 1.3 which freaked me out. The nurse told me that I should take 7mg yesterday (which I did), 6 today and 5 tomorrow and then alternate between 5 and 6 daily until my next result. I've been reading stuff around here and it seems like some people who have really low INRs are getting heparin injections but the anticoag nurse never said anything about getting a heparin injection (I had them when I was in the hossie so I have had them), she just said, "we need to give you a boost of warfarin today so take 7mgs [etc, etc]."

I'm just wondering if anyone can give me a bit of advice. I've actually got my post-op with my surgeon tomorrow and am generally doing quite well but I'm just really concerned because to be honest, I really don't know what I'm doing. Unfortunately, in my area, there's not a whole lot of anticoag support. In fact, at my GP's surgery, I mentioned to them that I needed to get blood tests to monitor my INR and they didn't even know what INR was! They thought I was saying "iron"! So I got fed up with them and just kept ringing the hospital until I got through to the anticoag clinic. I swear to god so many medical professionals act like I'm speaking some kind of crazy space language when I ask them questions about my INR and that doesn't really fill me with a lot of confidence.

Any advice, help or reassurance would be greatly appreciated!

Thanks!

First of all! Congrats on your replacement! You're still recovering and getting accustomed to the bloodthinner. I'm 5 months post-op and I also have a mechanical valve. The first month or so I was also freaked out with my INR. I was stressed out with my coumadin clinic as if they weren't giving me the right dosage. But for the first few months it takes some time for it to get adjusted. Baby aspirin also works, in addition to your coumadin/warfarin therapy. I take it as well, my surgeon told me to take it daily with my warfarin. You also have to get adjusted to it in terms of eating. Foods high in vitamin K have properties that cause our blood to get thick. So if you've been chowing on broccoli or green leafy vegetables in larger amounts it could be the cause for your INR to be low. Don't stop eating your vegetables all together. Just have it in moderation, and your coumadin should be adjusted so that you can enjoy a salad once in a while. Don't worry my INR was 3.8 which was high. So guess what I started doing? Eating salads and having the warfarin adjusted by the clinic. Hope this helped. But your ok. Its good to be precautious. I've been 1. Something for a while before I got to my 2's and 3's. Take care.

Jailene

A HEARTFELT WELCOME TO OUR OHS FAMILY we are all brothers and sisters here

 

[ALCapshaw2]

Hi there! Newbie here.

I had mitral valve replacement on 9th December and I have a mechanical valve which as we know, means I have to be on the warfarin.

My ideal range is between 3 and 4 and since I've been home and getting my blood tested and all that, I've been somewhere between 2.8 and 3.8 but yesterday I got a call from the anticoag clinic to tell me that my blood test from Friday had my INR at 1.3 which freaked me out. The nurse told me that I should take 7mg yesterday (which I did), 6 today and 5 tomorrow and then alternate between 5 and 6 daily until my next result. I've been reading stuff around here and it seems like some people who have really low INRs are getting heparin injections but the anticoag nurse never said anything about getting a heparin injection (I had them when I was in the hossie so I have had them), she just said, "we need to give you a boost of warfarin today so take 7mgs [etc, etc]."

I'm just wondering if anyone can give me a bit of advice. I've actually got my post-op with my surgeon tomorrow and am generally doing quite well but I'm just really concerned because to be honest, I really don't know what I'm doing. Unfortunately, in my area, there's not a whole lot of anticoag support. In fact, at my GP's surgery, I mentioned to them that I needed to get blood tests to monitor my INR and they didn't even know what INR was! They thought I was saying "iron"! So I got fed up with them and just kept ringing the hospital until I got through to the anticoag clinic. I swear to god so many medical professionals act like I'm speaking some kind of crazy space language when I ask them questions about my INR and that doesn't really fill me with a lot of confidence.

Any advice, help or reassurance would be greatly appreciated!

Thanks!

For your INR to have dropped from In-Range (or near range) to 1.3 is a Drastic Change which suggests that you may have missed 2 or more doses (which seems unlikely if you use a Pill Box or keep track of when you take your meds) OR, a Bad Test Result, or a MIX-UP in test results (i.e. you got somebody elses number, perhaps someone not on Coumadin). A second test to verify that result is certainly in order.

The Guidelines (USA) for an INR below 2.0 with a Mechanical Valve call for Lovenox (Low Molecular Weight Heparin) Injections until your INR is back 'In-Range', especially for a mechanical valve in the Mitral Position.

"Loading Doses" of Coumadin/Warfarin *used* to be recommended (in the USA) but have been found to lead to the 'Roller Coaster' Effect and are No Longer Recommended (in this country). The current recommendations call for simply resuming your Normal Dosing and having Lovenox Injections until your INR is back in range. (sorry for the repetition)

Most of our members who take Coumadin / Warfarin use a 7 Day Pill Box to keep track of our medication dosing through the week. I also keep a (Computer generated) spread sheet numbered vertically 1 through 31 with my medication names above each column and write down the dose taken each day to double check that my doses have been taken, and only taken once (unless prescribed more often).

FYI, the Most Stable INR Results are usually seen in patients who Home Test 2 to 4 times per month (and either self dose or call their anticoagulation manager with their results). The next most stable INR Results come from patients who are managed by a Dedicated Anti-Coagulation Clinic (usually with testing every 4 weeks when stable, more often if out of range).

'AL'