Unstable INR Causes

Hello, I was just diagnosed with Protein C Deficiency in April after losing my right kidney to a clot after having renal angioplasty/stenting for a rare disease (fibromuscular dyplasia). My nephrologist suspects I may also have another blood disorder (and it's suspected I have Ehlers-Danlos syndrom) and I'm just waiting to attend a blood clinic here in Canada that is apparently one of the best in the world.
In the meantime and since being released from a 3 1/2 month stay in hospital, I am taking Plavix, Fragmin shots (when needed) and Coumadin. I have blood services come to my house Mon-Fri to take blood and Saturdays I go to the lab - my veins get Fridays off :) Each evening my doctor calls me and tells me how much Coumadin to take. My INR is pretty unstable, going from 3.9 to 1.3 isn't unusual and I have been on doses of Coumadin of 3mg, 4mg, 5mg and 6mg. I know I am very sensitive to Vit K and am very careful to keep the amounts I consume consistent according to my doctor's instructions, so I don't think that is affecting my INR. What I'm wondering, is what else besides Vitamin K can cause unstable INR? I've heard stress can do this and I'm wondering about hormones since I am 45yrs old and was just found to have a cyst on my ovary/fibroids (will be having another endovag ultrasound in a couple of weeks to check size change). Has anyone notice if hormones or stress is responsible for big changes in their INR? I would really like to stop the daily blood tests, it's been going on for three months now and I'm just waiting to be in my target range for more than 4 days (it's 2.5-3.5 in my case). I have to go in and have my other renal artery opened and stented with angioplasty in October, and I'm nervous about doing that until my INR is stable, but I can't put it off too long either, because that's my only good kidney and I'd like to keep it healthy.:)

Any ideas about what might help with keeping an INR stable would be greatly appreciated.

I have been on Coumadin for 4 years following heart surgery for a mechanical valve. I have found that stress and being sick will lower my INR> For me I have to keep all forms of Vit K low. For example i really dont eat alot of vegies.. Though I should. I am either 3.8 or 1.8 always seem to be going up and down but I get mine checked once a month. I'm not a DR but are you eating vit k vegies (green ones). If so may be just for a month dont eat any and see if it stableises. Any way. It is possible to live fine long term on this stuff. I was 27 when I had my surgery.

Eden, Im concerned about how frequently they are checking your INR's. Your INR's will fluctuate daily but dont necessarily need to be checked or your Coumadin adjusted that way. Are you having the finger pricks or a regular blood draw daily - if its the normal blood draw, I would highly recommend asking your doctor to STOP. If you continue to have to have your blood drawn daily, they will ruin every vein access you have. I honestly dont believe you need to be checked so frequently. Maybe its just that I dont understand what your daily INR's are that is making your doctor warrant this.

Hi Laurie. My situation is a little different than most as I have two recently diagnosed rare diseases, a third that is almost a given (just waiting on testing) and strongly suspected I have more than one rare blood disorder. I was recently hospitalized for a month and during that time I had two blood clots. The second was after being released from hospital. I was released with an INR of 4.2, so they figured I was 'safe' from clotting, and within less than 12 hours I'd lost my right kidney to a massive clot. My nephrologist wouldn't release me from hospital until the daily blood tests were in place. I'm going to be attending what's supposed to be the best blood disorder clinic/team in the World, very soon. I suspect that the frequent blood testing will end after that. I'm in the care of very well-respected specialists, and fortunately my veins are in great shape despite all the pokes. Personally, after losing a kidney THAT fast, I am more comfortable with the way things are set up for now. I speak to my doctor each evening and I monitor my diet carefully. I've yet to have my INR within target range for more than 4 days - most of the time it's simply erratic. I know that one thing I may have (lupus anticoagulant) in addition to the Protein C Def, may also affect INR readings, so I expect things will improve once I go through the blood clinic testing. I'm also going to be part of a two day study on another of my disorders that might help with crossover info/genetic overlap. My INR is just really erratic and has gone from 8.0 to 1.7 overnight - hence the frequent tests and meciation adjustments (ie, I don't have the Fragmin every day, just when needed). Part of the problem is that having been diagnosed with so many different things - all of which are dangerous in their own right - that it's made it more difficult than normally would be the case. My history is too lengthy to go into here, but I've no doubt my doctors are doing what they feel is necessary. Even they have never done this before (I know because of the difficulties in trying to set it up with blood services making daily home visits). I just want to do my part by doing everything I can to keep my INR as stable as possible - thus the question here. :)

(In the first post I said a 3 1/2 month stay, which is wrong. I meant to say 3 1/2 weeks - actually 26 days)

Thanks CT - I am on Coumadin for life they tell me and so my doctors say it's better to incorporate my vit K, but to keep in consistent. I am being really careful about having the same amount daily, so that wouldn't explain the erratic INR readings (according to my docs and all that I've read). It IS amazing though isn't it, how much vit K can affect it. I think some of us are more sensitive to vitamin K than others. With the mechanical valve I am guessing you are on the same target rate as I am (2.5-3.5)? I am really looking forward to having things stabilized. Thanks for posting.:)

Eden, well good luck, it sounds like you have a lot going on, I wish I could help you out more but like you said, you do have a lot going on :)

Hi Eden,

I am so sorry that you have to go through so much stuff. I pray for you that your condition will ease and hopefully life will get back to a more "normal" way.

I can't offer you much more than prayers, understanding, hope, love and moral support.

I am not the most stable INR person myself, but compared to you, it's kids play....I think I am very very sensitive to vitamin K - even the slightest increase sends my INR into the basement.

Please do keep posting and let us know how you are doing.

All the best to you,

Angela

i HAVE af AF..... i AM GIVEN COUMADIN SINCE 4 YEARS NOW.... IT IS ALWAYS BETWEEN 2.5 AND 3,5.... NOW TAKEN AS A NUMBER IN TROMBIOSE DIENTS IN HOLLAND ON A READING OF 2.2 I AM GIVEN A HIGHER DOSIS PER DAY.... I FEEL IT... AND NOW IT IS 4.2.

SHOULD I GO TO ANOTHER LAB OR WAHT I TAKE 1 MG A DAY THATS IT... I AM TO BE THE PRISCREBER...... IN HOLLAND YOU CANNOT CONSULT A DOCTOR OR CARDILOGIST FOR THE DOSIZS ... THE DOSIS IS GIVEN BY atal A STATE RUN FOUNDATION I GUESS.... WHERE A PATIENT IS JUST A NUMBER

WHAT DO I DO..... WITH 4.2 NOW IS THAT DANGEROUS...... WHAT EVER DOSIS I AM GIVEN TILL NEXT WEDNESDAY I TILL TAKE I MG OF ACENOCOUMAROL WHICH IS WHAT I GET.... THE DOSIS IS INCOSTIENT////

I AM TIRED ODF ALL THAT AND BLUE SPOTS IN MU VEINS....... BEINK PRICKED EVERY WEEK

IS 4.2 INR DANGEROUS........BY LOWERING TO 1 MG A DAY I SHALL SEE WHAT HAPPENS OR SHOULD I UNILAREALLY STOP.... ONE CANNOT SPEAK TO THE DOSIZS MAN IN ATAL HOLLAND

SORRY FOR THE DISTURBANCE... OR SHOULD I SKIP ONEEVENING

SHOULD THE ACENOCOUMAOL BE TAKEN EVERY EVENING ON THE SAME TIME......

Sylvio-- es 4.2 is to high - but not that high over your range. I would recommend you hold your dose for maybe 2 days to bring it down - then go back to your regular dose and have it checked it again -- I cant believe there is no doctor for you to talk with -- these are only my recommendations as a nurse, I do not mean to treat or take the place of your doctor - this is only a recommendations. I cant believe that you have your coumadin regulated this way - its insane. Hope this helps

Hi Laurie...

I was doing quite well keeping a stable INR for a couple months, and this morning I ended up with a 1.3!

I am not aware of any changes in diet - no salad binges....just my regular "dose" of veggies that I don't change too much.

I have had chest pains a lot worse the past week though and am wondering if there is a correlation between the two things....

Anyhow, I am waiting to hear back from my doctor, but to tell you the truth, I have a lot more faith in you.....thanks for helping us!

Angela

Angela, hope you got my message on myspace to answer you - if not let me know. It is bizarre. I cant remember, have you seen a hematologist before? I think you may have told me this but Im not sure. I would guess that it may in fact be related - the chest pain and low INR. I wish I was smarter and could figure this one out :)

Hi Laurie,

Thank you, yes I got your message on MySpace and will respond, and yes I did take the 7.5 mg two days instead of just one. Just seems to make more sense.
Yes, I have seen a hematologist before. Well, that might be an understatement, it was at Stanford and the resident did all the "footwork" and I saw the hematologist only a few minutes. He was the one that took me off the coumadin and told me that the factors V and 8 "didn't mean anything" and that I would never ever again need coumadin again. Riiiiiiiiiiiiiiiight! He decided that after talking to me and looking at my chart for a total of 10 minutes. Maybe he was really that good, but how much can you tell in that short time
But no, I don't really believe this guy. I am convinced that where there is pain there is a valid cause.
Laurie, you are very smart! And you are helping us all in so many ways!

Angela, LOL I am not very smart - I just use my common sense :)

hey there. I am a doctor (medical officer) in a general medical ward, south africa. patient admitted for dvt and started on heparin 15000sc bd, and then warfarin 5mg, adjusted to 5mg alt with 7.5mg. she also received brufen for pain. heparin consequently discontinued. INR increased to 8, with no bleeding episodes. Warfarin stopped, treated with 2U FFPS + Vit K 2mg po. after two days INR 10. Given 2U FFPs. Repeat INR yielded level of > 10. Again 2U FFPs ordered. Repeat INR > 10 (no bleeding). All potentially anticoagulation-inducing drugs searched for and deleted (which was zero). Patient had correct doses of Warfarin initially administered by nursing sisters. Another repeat INR yielded >10. What could be the possible causes for this persistent prolonged INR in the absence of anticoagulating drugs and no obvious co-morbid illnesses? your help would be much apreciated. Simon Isaacs

Hello, Eden my doctor change my dosage of Comaudin to take each day and also change the time to take. The normal time I had taken my comaudin when my INR is low is between 5-6 pm. Now my doctor change the dosage to take and change the time to take between 11:00am to 12PM. It increased my INR that quick.

I have read studies that indicate 100mcg daily dosage can help regulate INR stability. They say try only with a doctor's supervision.

Diagnosed with pulmonary embolism in March, 2 weeks after having my third child. Pregnancy must have brought it on, however, on the warfarin my numbers are inconsistent; one week a 3.6 and the next a 1.7, then the next a 1.5 and a minute later a 1.3 ( the doctor retested because he was in disbelief) why does it keep dropping on the warfarin? What else could be wrong here?

My name is Marilyn I was diagnosed with pulmonary embolism in July 2008 due to protein C def. i have been on warifin since 2008 and have had fragmin shots my INR has been theraputic however while theraputic i got another blood clot in my lungs so my doc. up'd my warifin from 5mg to 7mg i was at a 1.0 then it went up from 7mg to 8mg,and i was at a 4.1 so my doc had me taking 8mg mon,wed,fri,sun and 7mg tues,thurs sat. it dropped to 1.2 then it went from that to 10mg then 12mg then 15mg then 20mg then 25mg and i was at 1.06 so i started fragmin again on wed. along with 30mg of warifin the next day i had my INR checked i was at a 1.0 so i had my fragmin shot along with 30mg of warifin my INR was 1.0 fri and today my INR was checked and it was 1.0 AGAIN so i had my fragmin shot along with 40mg of warifin I am on such a HIGH dose of fragmin AND warifin with the results of my INR showing 1.0 is this harmful to me? What are the risks if any? why is my INR 1.0 when i am on such HIGH does of blood thinners? i am SO WORRIED and SCARED that i will get another blood clot in my lung :( has anyone ever been or known someone on this high of doses and get the same results i am getting? can my body be rejecting the medication? what else can i do?

I'm taking warfarin due to DVT 3 years ago. My INR is historically unstable and my veins are so scarred and pitted that should I ever need an emergency IV, they would have to put it into my jugular vein! Now I have just begun to use the Philips home monitor and we are seeing wild fluctuations in my INR from 2.3-5 and back down to 3.2. I love the monitor and the self testing, but am wondering if anyone else has had this experience with their home monitor.