Questioning the Clinic

[CazicT]

So I am still relatively new to the Coumadin Clinic. I'm a little over 2 months post surgery. I started out getting tested via a visiting nurse who would report my number to a clinic would call with my dosing instructions. Eventually I transitioned out of that and started going to a different clinic that was in my home town since it would be convenient. They said I should be tested every 2 weeks until I get two in a row in range, and then i'd start going once a month.

Desired Range 2-3

Anyway on to what happened today...

My INR had been fairly stable for a while. I had been at 2.6 for two tests in a row (2 weeks a part at this clinic). My tests prior to that were all pretty stable too with maybe a few exceptions in the beginning.

Today I came in at 3.8... The clinician was wondering what changed in my diet or if I had been drinking more than usual. I couldn't really think of anything at the time. Later it occurred to me that I had been taking the Ensure protein drink that contains vit. K (2 servings a day) and I did stop it about a week prior. It's the only thing I can really point to to explain it.

Anyway the clinician said to take 2.5mg (half of normal) tonight and then continue with my regular dosing. Also, try to eat more greens for the next few days. Then, they scheduled me to test again in 3 weeks.

Am I crazy, or does it seem like maybe my dosing should have been altered more than that? Also, increasing the interval to 3 weeks doesn't seem like a great idea since I was pretty far out of range with no real explanation (at least at the time.. i'm still not totally sure I can blame the protein drink).

It seems like this clinic puts a big emphasis on diet, which from what i've read on this board is backwards. Also, they seem to like to push your tests pretty far apart.

I'm not super worried about it, since the wheels are already in motion to do home monitoring (Have Alere working on this, but insurance requires 90 days of regular monitoring first for some reason)... But I guess i'm somewhat concerned, because it could take awhile to actually get my meter.

 

[Warrick]

Hi, I started out under my GP for management and as soon as I got my meter (supplied free from the St Jude valves importer in NZ) I took to self testing and self management very quickly. I test weekly- INR 2.7 this morning.

I parallel tested for several months (lab test and tested myself at home on the same days to ensure readings were the same or similar).

As you will find on many posts on here the ones who self manage do it very well and have much better outcomes (IMO and from what I've read) than the clinics. After all no one cares more about your health than you !!

IMO and from my own experience from a 3.8 INR to half dose one day and then not retest for 3 weeks is pretty poor especially when you are only two months out.

I found and its very common that my dose needed to change several times over several months as the healing process progresses.
Now my "normal" dose is 9 mg daily although that can vary 0.5-1mg daily depending on my INR test for each week, I started out on 5 mg daily and it slowly worked its way up.

For me if I have an INR above my range (2-3) I drop to 7mg one day, 8 mg the following day and then continue 9 mg and retest a day or two later.

Although now I have solid data and history and I know this dosing for a high INR consistantly produces the same result so I don't usually bother with the extra test.
If you keep good records you can just look back and go what dosing did I do last time and repeat it and with good records and history of outcomes you gain great confidence in your own management.

It all takes time and it is simply crawl walk run , ask questions, keep records, the more you know the better you go.

I've never bothered about diet, and I wouldn't fell comfortable going longer than weekly testing, I can go several weeks on the same dose and in range then whammo out of the blue it will change either up or down for no rhyme or reason, so if I was on monthly or even longer testing I would be unaware it wasn't right.

 

[Agian]

Cazic, it takes a while for your INR to reach a steady state. I guarantee, once you get your own meter you'll feel much better. I'm in total control! I have scripts for 1, 3 and 5mg tablets and do my own thing. No impact on lifestyle.

I might have said this before. Before my operation, I had convinced myself that I would never be allowed to eat spinach again. It actually made me sad. Funny thing is, I never liked the **** anyway LOL

 

[Warrick]

yeah I boycott national spinach day.. popeyes got a lot to answer for

 

[Superman]

If you don’t like Spinach , you’re not doing it right.

I started on Warfarin in the dark days before home testing. Now I home test, but I’m followed by the clinic. I look back on those days and can’t believe I’d routinely go a month or even longer between tests. Sometimes I went as long as six months. It was inconvenient and time consuming. Would have thought after having open heart surgery, I would have a greater respect for my own mortality. Nope.

Anyway. Long story short. Weekly home testing has me feeling much more informed and in control.

Regarding your adjustment; it seems reasonable. However I would think you’d want to test in a week. Particularly because of your diet change. If you stopped the protein shakes because of the vitamin K, I’d start back up. Seems that provided some stability to your dosing.

 

[Agian]

I still eat spinach, btw. I don't think I made that clear.

With all this sleaze coming out of Hollywood, I wouldn't be surprised if we found out Popeye was a prick.

 

[pellicle]

With all this sleaze coming out of Hollywood, I wouldn't be surprised if we found out Popeye was a prick.

I heard that he put his hands all over Olive and that the reason that the guy had the eating disorder was due to an inappropriate advance from Popeye in the gents one day early on the set.

 

[pellicle]

Hi

I'm sorry to hear that you've had issues in management, but as you've found this place I'd say you're well on the way to avoiding being a typical "usual care" statistic (meaning come to harm at the hands of the clinics).

So Welcome to the good ship "self management" ... you can of course join at any time after the tour, or just stay on the dock and look.

There are plenty of stories in the sticky posts on the forum.

.. They said I should be tested every 2 weeks until I get two in a row in range, and then i'd start going once a month.

myself I'd say weekly testing at first and then move to monthly but to be honest I would just stay with weekly testing...

Desired Range 2-3

a usual range for a modern bileaflet mechanical ... I concur

Anyway on to what happened today...

My INR had been fairly stable for a while. I had been at 2.6 for two tests in a row (2 weeks a part at this clinic). My tests prior to that were all pretty stable too with maybe a few exceptions in the beginning.

ok, firstly "the beginning" is commonly 6 months ... perhaps more, I can explain that if you wish, but lets just leave it at that for now.

Today I came in at 3.8... The clinician was wondering what changed in my diet or if I had been drinking more than usual. I couldn't really think of anything at the time. Later it occurred to me that I had been taking the Ensure protein drink that contains vit. K (2 servings a day) and I did stop it about a week prior. It's the only thing I can really point to to explain it.

except that Vitamin K would lower your INR if it was to have any effect ... I'm willing to bet that if you look at the ingredients list that it was high in albumin. Which is a protien and which is also related to how the drug (warfarin, but the trade name you are using is Coudamin. Its like saying "hes' got a F100", when indeed he has a GMC, but you meant a pickup but everyone knows what a F100 is ... in your town)

Anyway the clinician said to take 2.5mg (half of normal) tonight and then continue with my regular dosing. Also, try to eat more greens for the next few days. Then, they scheduled me to test again in 3 weeks.

I agree with all of that except the test again in 3 weeks ...

Am I crazy, or does it seem like maybe my dosing should have been altered more than that?

well, myself I wouldn't have but then myself I'd have:

1. been testing weekly so I'd see the changes and have done something about it earlier
2. be monitoring where it goes to after than change in dose and see ...
3. the influence of the eat more greens is just a "fancy" that these people have because I can assure you you will need to eat a lot more greens than you may have been thinking ...

Also, increasing the interval to 3 weeks doesn't seem like a great idea since I was pretty far out of range with no real explanation (at least at the time.. i'm still not totally sure I can blame the protein drink).

agreed ... which harks back to my first statement about the usefulness of clinics

I'm not super worried about it, since the wheels are already in motion to do home monitoring (Have Alere working on this, but insurance requires 90 days of regular monitoring first for some reason)... But I guess i'm somewhat concerned, because it could take awhile to actually get my meter.

ok, well myself I'd just buy a meter (wait, I actually did that ... ) and begin self testing. If you consider that you can pick them up from eBay for $500 and the strips work out to costing $6 a test its pretty cheap.

What would you pay to restore your speech or eyesight after a stroke? $500?

Here is my blog page on managing INR, its a good starter and (in my view) a good reference to go back to. Almost every paragraph has a solid point.

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

use the "message" here to contact me if you like or send me an email to my hotmail account (my username here @ hotmail) and if you have whatsapp or skype I'm happy to talk things through with you.

Best Wishes

 

[pellicle]

Ohh ... I forgot to address tihs point

Today I came in at 3.8...
...
I'm not super worried about it, since

and also you need to go much higher before getting "worried" ... this graph shows the results of a large study indicating "events" such as bleeds (INR too high) or clots (INR too low)

[IMG2=JSON]{"data-align":"none","data-size":"full","height":"1024","width":"570","src":"https:\/\/c2.staticflickr.com\/4\/3868\/14626794599_c646b1872d_b.jpg"}[/IMG2]

so, you're well inside the safe range

Shalom

 

[Superman]

Hi

except that Vitamin K would lower your INR if it was to have any effect ... I'm willing to bet that if you look at the ingredients list that it was high in albumin. Which is a protien and which is also related to how the drug (warfarin, but the trade name you are using is Coudamin. Its like saying "hes' got a F100", when indeed he has a GMC, but you meant a pickup but everyone knows what a F100 is ... in your town.

I read it as he stopped consuming the item that contained Vitamin K, therefore the amount of Vitamin K in his diet was reduced, and his INR responded with an increase. That, and a lack of stability would seem to follow when eliminating a consistent item from your diet.

Regarding your chart in the post immediately preceding this one, it would seem to support a range of 2.5 - 3.5, which was the old standard. I still don't get why the push for lowering INR as some desirable objective. But that's another thread.

 

[pellicle]

Hi

I read it as he stopped consuming the item that contained Vitamin K, therefore the amount of Vitamin K in his diet was reduced, and his INR responded with an increase. That, and a lack of stability would seem to follow when eliminating a consistent item from your diet.

agreed ... guilty as charged, however I would say:

• supplement vitamin K is usually K2 which is noted among those here to take it (and in the literature) to have an insignificant (if any) influence on INR
• Albumin can influence INR but as to the dietary albumin VS the actual blood serum levels I'm not sure. Checking my refs suggest the following. "Patients with serum albumin levels <35 g/L required significantly less warfarin (3.84 mg/day) than patients with levels =35 g/L" so if he was (and I'm unclear from his post) if the OP was taking "the Ensure protein drink" previously and continuously during previous INR testing and dosing then ceasing that may have had an effect.

None the less, the testing regime is insufficient to really know and there could well be many other factors involved (which is why I normally don't wonder too much about food) and I'm not entirely show how far post op he is ... it could be more related to changes in his post op metabolism.

For reference here is the link to the study which cites blood serum albumin as an INR issue:

http://www.ajconline.org/issue/S0002-9149(00)X0132-4
[h=1]Exaggerated initial response to warfarin following heart valve replacement[/h]

Regarding your chart in the post immediately preceding this one, it would seem to support a range of 2.5 - 3.5, which was the old standard. I still don't get why the push for lowering INR as some desirable objective. But that's another thread.

agreed ... however myself I can report that at 3.5 while I don't have "bleed events" I do bruise more easily ... I attempt to draw peoples attention to this so that they feel less stressed about being "out of range" and usually (as I have here) suggest that they can get back into range without taking drastic action.

 

[CazicT]

I read it as he stopped consuming the item that contained Vitamin K, therefore the amount of Vitamin K in his diet was reduced, and his INR responded with an increase.

Yes that is what I meant. I was told to drink it following my surgery for healing. I ran out and didn't get any more. I don't particularly want to keep drinking it forever since it has a decent amount of calories and is fairly expensive, so I switched to a protein powder drink that contains mostly just protein, but not any of the extra stuff. I guess I could just go back to the other drink until I am on a weekly testing schedule so I don't rock the boat too much. But again, i'm kinda just guessing that that is even the issue. The site for the drink says it would take several servings a day to affect INR, I was only drinking 2. So who knows.

Anyway, thanks for the graph pellicle, that does ease my mind a bit that i'm not in the danger zone yet.

Very weird that home monitoring isn't pushed more than it is. Surely there are some patients who couldn't handle it, but for most people it would seem like a huge advantage being able to test weekly or at least bi-weekly and to be able to test pretty much any time you are questioning if you are in range for any reason.

 

[Superman]

Very weird that home monitoring isn't pushed more than it is. Surely there are some patients who couldn't handle it, but for most people it would seem like a huge advantage being able to test weekly or at least bi-weekly and to be able to test pretty much any time you are questioning if you are in range for any reason.

Unfortunately most clinics still treat this like an elderly / shut in medication. To a certain extent, they are right. But they aren't very good at recognizing the demographic differences between patient populations. They just follow their handy-dandy guidebook to a certain extent.

 

[pellicle]

Yes that is what I meant. I was told to drink it following my surgery for healing. I ran out and didn't get any more.

wow ... talk about a memory spike ... I had the same too! I'd completely forgotten about that ... talk about indexing

...f. I guess I could just go back to the other drink until I am on a weekly testing schedule so I don't rock the boat too much.

I wouldn't bother myself ...

Anyway, thanks for the graph pellicle, that does ease my mind a bit that i'm not in the danger zone yet.

a pleasure to help

Very weird that home monitoring isn't pushed more than it is.

I believe that's a US thing, in some European countries it is ...

 

[lance]

Try and remember as you recover and become able to tolerate more exercise that the warfarin in your system will decrease because warfarin is metabolized in your liver. Increased exercise causes a greater volume of blood to flow through the liver thereby reducing the amount of anticoagulant in your veins. The reading was high for you but not dangerously so for most. It would be better to test weekly to develop a "trend" and following an adjustment to know how the adjustment is affecting your test results.
As for the Vitamin K try and eat a healthy diet including Vitamin K because it is needed for healthy bones.
As you continue with anticoagulant your veins will pay the price because they will scar. Home testing is the smart way to proceed and many on this site will help you learn.
Happy testing and a speedy return to physical condition. Lack of or increase in physical activity level is more important than Vitamin K and is so little mentioned.

 

[Superman]

Try and remember as you recover and become able to tolerate more exercise that the warfarin in your system will decrease because warfarin is metabolized in your liver. Increased exercise causes a greater volume of blood to flow through the liver thereby reducing the amount of anticoagulant in your veins.

Interesting. Just the info I was looking for a couple months ago. I’ve had a renewed focus on fitness and was having a hard time stabilizing my INR. This may have been explained when I asked about it. Apologies to those who tried. This explanation made it click for me. Thanks.

 

[Jamey T]

I personally wouldn't change my dose at 3.8, but would go to the lab for another test in a week to see if it was still high.

Someone here said they would rather be 4.0 than 2.0, and I kind of took that to heart. Pellicles graphs always help make that point also.

So you know, my surgeon wanted me to have an INR of 3.0, with a range of 2.5 to 3.5, so he was a little more cautious regarding low INR readings. I am OK with his recommendations, and purchased my meters out of pocket, since my insurance company turned me down for home testing.

All of that for me to say I also wouldn't worry too much about your 3.8, but I wouldn't go 3 weeks without verification either. It is in your best interest to know how you react to changes, and make sure you track all your tests so you have a history to look back on.

 

[pellicle]

another point on Lab draws is that over time (like the rest of your life) having vein punctures will cause vein damage and scarring. Thus its in your best interest to move towards finger stick blood sample over time.

 

[Agian]

This explanation made it click for me. Thanks.

....... Oh, never mind.

 

[Superman]

....... Oh, never mind.

Yeah. Pun intended.