More medical ignorance about anticoagulation

[Protimenow]

On Monday, 9/11, at about 4:30 AM, I had a TIA. The left side of my tongue tingled, my lips tingled (kind of like novacaine wearing off), some of my left cheek tingled, and I had some tingling in my left thumb and the outer side of my left pinky.

I had an ambulance take me to the hospital. The medication (actually a rapid anticoagulant) that they give to stroke patients wouldn't work for me - I already take Warfarin.

I couldn't get an MRI because it requires that a representative of the company that made my pacemaker be there to change settings that are MRI compatible, then set it back after the MRI.

My cardiologist didn't think that I needed the MRI because the treatment plan wouldn't change.

My admitting doctor asked the usual stupid questions:

Was I sure I didn't miss a dose? (I was. I use a pill thing with daily dosing).

Did I recently eat a lot of greens? (This thinking has been pretty well debunked).

Did I drink a lot of alcohol in the past few days? (Not really relevant, but he asked anyway).

Was I sure I didn't miss a dose? (Already answered).



I didn't want to be in the hospital any longer than necessary.

A neurologist said that, based on my symptoms, I had a small stroke in my brain stem.

It finally became clear that I COULD ger an MRI. The neurologist insisted on it (he was probably curious about the source).

By that time all the deficits had resolved.

I had the MRI.

My cardiologist's assistant visited me in my room confirmed that I had a small TIA in the right side of my brain and repeated that there's no way to change my anticoagulation to accommodate for this event. I knew that.

When it came to being released, my admitting doctor wouldn't do it. (Here's where the ignorance part of this posting comes in). He wouldn't release me until he talked to my cariologist about adjusting my medications or my INR levels.

He didn't realize that if I raised my INR significantly, I would be risking a bleeding issue. If I lowered it below 2, I would be at risk of another TIA. There was no room to make any changes to my INR. The doctor just didn't get it.

Will they ever learn?

Another interesting thing:

My anticoagulant came from the hospital's pharmacy. The doctor ordered warfarin. The pharmacist filled the order with Jantoven. Jantoven is similar to warfarin - but not really the same. I've tried it before and wasn't really able to regulate my INR. The pharmacy didn't know this. The nurses who dispensed it had no clue about anticoagulation (they didn't realize that the half-life of this anticoagulant is about three days -- I think they thought that it would be like most medications that start working as soon as they're swallowed.

I'm sure that there's little or nothing that can be done to fill this information gap, but it's annoying, and probably caused me to waste another day in the hospital.

What misunderstanding of how warfarin works have YOU encountered?

 

[pellicle]

What misunderstanding of how warfarin works have YOU encountered?

my problem is that I'm not tolerant of fools (except perhaps myself) and so I took to managing myself by the end of the first year

 

[mecretired]

I learned early on from all the great people on this site that we know more about warfarin management and how our body reacts than any of the professionals. Unfortunately my cardiologist has a Coumadin clinic that I have to deal with. Early on they required monthly testing and that I use only one dosage of pill. I had to take 5 mg pills and split them then take different doses on different days. I finally bought my own Coaguchek and tested weekly without them knowing. Then I stressed out at my cardiologist’s office and they finally allowed me to have 1mg and 5mg pills. When I turned 65 Medicare gave me a Coaguchek and pays for weekly testing. This is our lives we’re talking about here and we know more about this than most of the so called professionals.

 

[David Robbins]

my problem is that I'm not tolerant of fools (except perhaps myself) and so I took to managing myself by the end of the first year

I monitor my INR at home through the Coagchek system. My primary care prescribed this for me as my cardiologist at Dignity doesn’t prescribe home monitoring. They prefer you visit the clinic weekly, which can be a major inconvenience. My primary care doctor prescribed 2.5mg tablets, which allow for small dose increase/decreases at each 2 week interval. He also gave me a multiple row spreadsheet which provided dosage recommendations to adjust the Warfarin as necessary to stay in the 2.5-3.5 range of values for a mechanical heart valve. I have not changed my eating habits, but change dosage of meds to compensate for out of range readings. This hogwash about changing your diet to manage INR could cause nutrition deficits eventually and is bad advice. I still eat salads, drink cranberry juice and wine. I’ll be damned if I’ll follow doctors or hospital dieticians advice when it comes to nutrition. After 55 years of competitive sports( running, power lifting and bodybuilding), I know my body’s needs better the them. It’s sad that medical schools don’t teach doctors more about nutrition and exercise. Also sad that dieticians have such a narrow knowledge of training, not understanding specific needs of a persons health any activity levels and capacities before prescribing diets that are the same despite a persons individual needs. For example, I entered the hospital at 190lbs at 5’9”(10% bidyfat) and the diet regime caused me to lose 50 lbs in 30 days. Even though I was mostly inactive in a hospital bed, my muscles required a higher protein intake then the AHA recommended. My sister, a Director of Cardiology at another hospital started bringing me in tuna fish sandwiches and other protein foods. Consequently my weight increased to 165lbs after cognitive rehab. 116 days in hospital and cognitive rehab was a huge amount of time. I lost my CEO job, my father passed and my wife Left me for another man and filed for divorce during my stay. Needless to say, 2008 was not my best year.

 

[LondonAndy]

Not that long after I came out of hospital, probably 2 or 3 months later, my INR dropped to below 2. My surgeon had said that if this happened I should get injections of Heparin (Lovenox) until back in range, and he had felt so strongly about it that he wrote this instruction in my INR record booklet before discharge.

When I went to my anticoagulation clinic they refused to prescribe the injections, despite the surgeon's written instruction. So I went back to that hospital and waited for him to come out of surgery. He made out a hospital prescription immediately.

 

[Protimenow]

You probably didn't need Lovenox -- taking your usual dose should have brought your INR back into range within about three days.

I've been self testing and self managing since 2009.

The thing with the doctor at this hospital is that this ignoramus didn't realize that there was nothing that could be done in relation to my TIA - a higher INR would have put me at risk of bleeding, a lower dose could have caused another TIA or worse. This jerk didn't agree to releasing me before my cardiologist contacted him and told him to release me.

It's good that he did - I was minutes away from leaving AMA (against medical advice).

I wish they taught this stuff, made it required that they learn this stuff as a required part of the CME (continuing medical education) training, and that all doctors KNEW this stuff before guessing about it or thinking they know something about it.

One more thing: the doctors ordered a 'heart healthy' diet. This meant, of course, lots of brocolli (which I didn't and won't eat), and very low sodium. I've found in the past that if my sodium level is TOO low, my arrhythmias get worse. Our bodies NEED a certain minimal of sodium. These 'heart healthy' (and not necessarily INR appropriate) diets are NOT always a good idea.

 

[pellicle]

Hi Dave

great post.

My primary care doctor prescribed 2.5mg tablets, which allow for small dose increase/decreases at each 2 week interval.

I've chosen to have 1, 3 ang 5mg tablets to make dose adjustment easier. I can using that simply get half mg incriments if needed and often get half mg's balance out as you can imagine with half of 3 and half of 5.

My usual dose varies (over the years) between 6mg and 7.5mg daily (with very occasional recourse to lower or higher).

He also gave me a multiple row spreadsheet which provided dosage recommendations to adjust the Warfarin as necessary to stay in the 2.5-3.5 range of values for a mechanical heart valve.

Firstly I'd be interested to see that spreadsheet not least because "that's quite unusual" and secondly is that 2.5 ~3.5 a Mitral valve because that's the usual starting guideline for a Mitral not an Aortic.

I have not changed my eating habits, but change dosage of meds to compensate for out of range readings. This hogwash about changing your diet to manage INR could cause nutrition deficits eventually and is bad advice.

If you mean avoiding eating greens and Vitamin K its been debunked and questioned in a number of papers, this is perhaps the best:

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4998867/

..., drink cranberry juice

I can say that cranberry juice has perhaps caused INR variations in members here, but we can't be sure. I'll say that's in the YMMV category. Grapefruit juice in sufficient volumes should be avoided

a good starter on why here
https://en.wikipedia.org/wiki/Furanocoumarin#Medication_interactions

It’s sad that medical schools don’t teach doctors more about nutrition and exercise.

There is really only so much most people can grasp, and as a GP there is a lot (not all of it medical, much of it regulatory) to learn.

Also sad that dieticians have such a narrow knowledge of training,

I usually rate dieticians as the dumb blondes of the allied health area.

Nice chatting

 

[Protimenow]

Although I haven't received any direction from my cardiologist to make any changes to my dosage or to my target INR, and there's probably no evidence that my INR had ANYTHING to do with my TIA, I'm thinking about raising my target to 3.5, with a variance of .5. I've had my INR above 4 a few times with absolutely no issues. I don't think there will be ANY negatives related to this slight target increase - and if there IS any link between my normal INR (it was 3.2 when I had the TIA) and this weird event, the slight increase may be of some value.

 

[pellicle]

. I don't think there will be ANY negatives related to this slight target increase

perhaps only brusing if you take a fall or bash yourself.

I find that to be vexing

 

[Protimenow]

Again, I don't know that raising my INR slightly - closer to 4 would make any difference in risk of TIAs. There's no reason why, with an INR of 3.2, I would have a TIA. Maybe it's just something that my genes let happen (my father died at 92 of a stroke (there may have been other factors, and HIS father died at around age 50, also of a stroke). Maybe it can't really be completely avoided in my case, because there are other forces at work here.

I don't think a slightly higher INR would be that bad a thing - low to mid 3s shouldn't be that bad - but may not do ANYTHING to help me avoid another TIA.

I blamed my first TIA, a dozen or so years ago, on a bad meter (it showed an INR of 2.6 -- the hospital said 1.7, but there were no errors in my Coaguchek XS.

 

[pellicle]

here's no reason why, with an INR of 3.2, I would have a TIA. Maybe it's just something that my genes let happen (my father died at 92 of a stroke

there are more issues that cause stroke than just blood thrombus

 

[vitdoc]

Your assumption is that you had an embolism associated with your mechanical valve. Given your story this is most likely. But you may have just occluded a vessel by clotting or from some other mechanism. Other options beside increasing what already is an adequate INR would be adding a platelet agent like low dose ASA. The major downside is longer bleeding times .

 

[Protimenow]

there are more issues that cause stroke than just blood thrombus

Of course.

As I think I said earlier, some of this may have come from my father and his father.

 

[Protimenow]

Your assumption is that you had an embolism associated with your mechanical valve. Given your story this is most likely. But you may have just occluded a vessel by clotting or from some other mechanism. Other options beside increasing what already is an adequate INR would be adding a platelet agent like low dose ASA. The major downside is longer bleeding times .

I've been taking low dose ASA at bedtime for years.

I have no idea WHY I had this ischemic event. Blood pressure was good, INR was in range (and I won't change my range after all), and I doubt that the high levels of stress that I'm currently living under had ANYTHING to do with this.

I still don't have a neurologist - the one who okayed my release didn't see me after the MRI results were reported - my cardiologist gave me the results, and this was all he needed to know.

I may have to get a neurologist after this event. I'm trying to function as normally as I can - taking small steps to see that I can take larger steps. I don't know if there's a limit to how much I can lift, but I'll keep it under 1000 pounds (maybe 20) in case this has anything to do with risk.

I'll get re-evaluated by my physical therapist at the Balance therapy place where I've been going, on Monday.

btw - this same medical ignoramus tried to set me up with a home health assistant -- even though Occupational Therapy and Physical Therapy cleared me for discharge. This seems to be a) protocol for all stroke patients, or b) CYA medicine, or c) inability to read a chart, or d) any or all of the above.

 

[carolinemc]

there are more issues that cause stroke than just blood thrombus

So true. And not always regular strokes. for I had an eye stroke back in 2017. I was very lucky at the time. Still have it stuck behind the left eye.

 

[GW Vancouver BC]

Again, I don't know that raising my INR slightly - closer to 4 would make any difference in risk of TIAs. There's no reason why, with an INR of 3.2, I would have a TIA. Maybe it's just something that my genes let happen (my father died at 92 of a stroke (there may have been other factors, and HIS father died at around age 50, also of a stroke). Maybe it can't really be completely avoided in my case, because there are other forces at work here.

I don't think a slightly higher INR would be that bad a thing - low to mid 3s shouldn't be that bad - but may not do ANYTHING to help me avoid another TIA.

I blamed my first TIA, a dozen or so years ago, on a bad meter (it showed an INR of 2.6 -- the hospital said 1.7, but there were no errors in my Coaguchek XS.

My advice based on 25 years experience using a home Coaguchek machine, you should relax about variations in your INR. My target range is 3.0 - 3.5. If I'm out of whack and not lower than 1.0 or hight than 5.0, I simply adjust my Warfarin dose to correct things very quickly. Only is the problem persists do I consult my Family doctor.

 

[Protimenow]

GW -- if you somehow let your INR drop 'below 1.0' (if this is possible), you have a REAL problem. Testing weekly should catch any significant drops. I wouldn't worry about an INR of 5.0 -- just slightly drop the dose (1/2 mg) and test in a few days.

But thanks for your input

-------

I've been self managing since 2009. In that time, I've used (and tested against other machines and labs) Protime Classic and Protime 3 meters, InRange meters, CoagSense PT1 and CoagSense PT2, Coaguchek S and Coaguchek XS. I've found that labs aren't always accurate, especially if blood isn't drawn at the lab, and is frequently mishandled before it gets to the lab.

The InRange was the worst - and most dangerous. I had a TIA in 2011 (I think) after trusting my life to the InRange. The meter said 2.6. The hospital told me it was 1.7. The InRange was forced off the market by the FDA.

I"m trusting the XS. Lab tests have come close to the XS, and the XS results were close to the hospital during my recent hospitalization.

Both TIAs were ischemic strokes - not vascular bleeds. This time, my INR that morning was 3.2, and I've been in range for years (other than the times I intentionally temporarily lowered it before procedures).

I have no real idea about how my INR contributes (or not) to ischemic strokes. I sure hope I don't get another.

For that reason, I don't plan to change my range - I'm comfortable between 2.5 and slightly less than 4.0.

I don't know if a TIA has any resemblance to what's being called Eye Stroke, other than the last word in the description.

 

[Mister_James]

I don't agree with your assumptions.
1. Jantoven IS Warfarin. Typical of generics, the active ingredients are the same the difference is in the inactive ingredients.
Jantoven or Coumadin are brand names. The active medication is Warfarin.
2. If you have TIA on warfarin it means your anticoagulation range needs modification. The reason for Warfarin is not to keep you in a range, it is to stop blood clots. If you are in therapeutic range and have blood clots, you need adjuvant therapy: maybe aspirin and statins.

Even if transient, it would be malpractice to release you to continue what you have been doing IF it is not therapeutic.

My $0.02 contribution.

 

[pellicle]

2. If you have TIA on warfarin it means your anticoagulation range needs modification.

a small adjustment which I would prefer is:

2. If you have TIA on warfarin it means your anticoagulation needs examination. Perhaps discuss this with your Dr.​

This is because there may be other issues at work (not least perhaps the inclusion of antiplatelets in this) perhaps even something else which should be investigated.

Its also assumed by me that the person does not have a faulty or irregular taking / testing process. I've seen quite a number of these being the causes of TIA and thrombosis obstruction over the years (here and in journals).

Other than that small point I agree fully.

 

[carolinemc]

I don't agree with your assumptions.
1. Jantoven IS Warfarin. Typical of generics, the active ingredients are the same the difference is in the inactive ingredients.
Jantoven or Coumadin are brand names. The active medication is Warfarin.
2. If you have TIA on warfarin it means your anticoagulation range needs modification. The reason for Warfarin is not to keep you in a range, it is to stop blood clots. If you are in therapeutic range and have blood clots, you need adjuvant therapy: maybe aspirin and statins.

Even if transient, it would be malpractice to release you to continue what you have been doing IF it is not therapeutic.

My $0.02 contribution.

People do not realize that in other countries they have different generics of Coumadin. Just like Warfarin is Genetic of Coumadin.