Low INR 1.4 - 1.5

[Nisleg]

Hi, my name is Yvonne Leggs. It's been a while since I last visited the site but a lot has happened since that time. In April they told me I was ready for surgery my valve was only functioning at 5 percent and it could not be repaired it had to be replaced and I did not have myxoma but I did need a double bypass two arteries were 98 percent blocked. Well, the surgery was good, had to get a smaller valve because the tissues around the valve were damaged so they had to put in a smaller valve. I stayed under for two days blood pressure too high to bring me from under. Stayed in hospital for 12 days, had a hard time recovering but thank God he's good I made it. Returned to work in mid-July. Going through the depression bit and still have a hard time breathing at times but I take it slow. Being in the Army it's kind of hard to take it slow,so doing the best that I can. My concern is they can't seem to get my INR levels under control. I'm taking 15 to 12 mg and my levels are 1.4 and after 10 days it went up only 1.5. I'm scared because they are being really evasive about the symptoms that I should look for as far as clotting or stroke. I'm already anemic I'm trying to stay with in the food range given and only drink alcohol occasionally mainly if I do on the weekend and it's wine. I'm getting really scared now because I'm constantly on the move and work long and late hours at work and usually after hours I'm by myself. Can anyone offer me any advice on what I should do such as diet, lifestyle, and so forth. What are the signs I should be looking for? My gums do bleed when I brush my teeth and I cut my finger this week and it still bleeds if I hit it against something. How long will it take before I'm 100 percent up to pare or will I ever be. I read the website constantly but never join in on the chats until now. But if it had not been for this website I would have not had the right information to prepare and equip me for the surgery to ensure that I was getting the right care. I admire you all from afar but you have been a great source of inspiration to me and a help during my storms. Thank you.

Yvonne

 

[Mary]

Yvonne,
I can't offer any advice about INRs, but since you've posted in the anticoaguulation forum, I know someone will be along presently to offer suggestions.

 

[Nancy]

Yvonne-

Very unfortunately, you are at the mercy of coumadin managers who aren't at all good at what they are doing.

Absolutely, they can get you into range. That's an enormous amount of BS they're handing you.

Are there any other alternatives for your management?

Being evasive with answering your medical questions and concerns speaks volumes about the kind of care you are receiving.

INSIST that your questions be answered or start doing some investigation into better medical consultants.

This is your life, not your doctor's or nurses. You should be expecting excellent care. You only have one life to take care of, your doctor has many other patients. So you will have to speak up for yourself.

Hoping things improve for you very, very soon.

 

[Karlynn]

Yvonne,
My personal opinion is that they should have you on Lovenox injections as long as your INR is staying that low. Once you get into range, you would stop the shots.

You are on a lot of Coumadin, but the amount you should be on is the amount that keeps you in range.

As far as diet, eat what you normally eat. Having to change your diet because you are on Coumadin is really an old wive's tale. The saying we use here is Dose the Diet, Don't Diet the Dose.

It takes a year to recover from OHS.

You should also pay a visit to Al Lodwick's site www.warfarinfo.com It will have a lot of information there that you may not be aware of.

 

[Georgia]

Ditto Karlynn!!!

Your inr is dangerously low particularly for a mechanical mitral valve.

Since you've been checking the forums for a while, you'll know that where coumadin is concerned, we must be agressive in finding appropriate care.

Regardless of how much coumadin you're on, it's obviously NOT ENOUGH. There are a few folks out there who need really large doses.

PLEASE insist on better management. If your doctors are pooh-poohing your concerns about your inr, print off some of the information on www.warfarinfo.com and present it to them. Find a coumadin clinic. Be a proverbial squeaky wheel. It's a scary proposition since most of us are trained to be good little patients. But docs and their nurses don't like managing coumadin, particularly for valve patients. So you have to be assertive.

 

[Cris N]

Yvonne,
Obviously you are getting substandard care. Who is attempting to manage your warfarin - military or private? There are anticoagulation clinics (military & private) in Virginia... http://www.acforum.org/locations_southeast.asp

You might see if one of the ones on the list might be willing to take you on... you might want to talk with some of them on the phone to discuss you situation - you need to find someone who knows what they're doing and who wants to help you solve this dangerous dilemna.

I wonder if the lab where you're having your tests done is doing something wrong or if their equipment is miscalibrated. If your gums are bleeding and you finger cut bleeds - getting tested at another lab might be a good idea while you're looking for a clinic. Home testing would be another option. (click on the QAS logo at the top of this page)

Have you been diagnosed as anemic? If so, did dr recommend your taking iron supplement? Many of us were anemic after surgery & required supplements. I'm still taking iron & my surgery was in May.

You might also tell your dr that you'd would like to be tested for clotting disorders - there may be a reason why you are having so much trouble raising your INR.

As far as diet & lifestyle are concerned I agree that the suggestion to look at www.warfarinfo.com could be very helpful.

I do hope that you're able to get some help - and soon. I agree with Karlynn - you should have some protection while getting this under control. BE FIRM!

Cris

 

[Karlynn]

If you're anemic - that could also be a reason for feeling like your recovery is not where it should be. I think you will feel significantly better when you get some iron into your system.

 

[Guest]

I have had e-mails from several people who were in the military who were forced to retire when they got a mechanical valve. Were you allowed to remain on active duty. I'm interested because it may help other people who are being forced out.

I 100% agree that you need to be very aggressive in getting your INR at or above 2.5.

 

[Nisleg]

Thank you, thank you. You all are blessing my spirit. Let me try to answer all of your questions. First, I am being treated at a military installation, Walter Reed Hospital in Washington, DC. They have a Coumadin Clinic but I get my blood drawn from the Clinic in the Pentagon which usually contact my provider within a day or two with the results. I have been diagnosed as anemic since I was a child so they are aware that I have always been. She keeps questioning me about changes but I have not had any, I manage my intake of green leafy vegetables, stay away from green tea, not a real drinkers. I am in a stressful environment right now with the war and the long hours. I have considered going to a civilian doctor and paying for it out of my own pocket, so I will check the website that was sent to me and try to get to Mr. Allodwick site today. I will contact her today about the testing for clotting disorder. Mr. Allodwick, at the present time I have two permanent profiles, for the valve and bypass. I have 19 years and 4 months in the Army. I have not went before the Medical Board yet because Soldiers from the War is first priority. The regulation that I read regarding being medical retired and retirement is that if you can show them that you can continue to do your job, depending on what it is, and it won't affect your perfromance other than rigorious PT Test they will let you stay in. Also, usually if you are close to retirement they would not force your out and would be willing to let you retire based on your job. Also, your doctor's recommendation plays a big part in the decision also. He has to make a recommendation to the board on what he thinks should happen and justify it. If he request that the board let you stay in the board gives the doctor's recommendation a lot of weight, because they feel that he knows what's best for you. I am a Court Reporter/Sr. Paralegal so I'm basically sedetary. But the board can also recommend that you be reclassified into a job that won't be strenous or stressful to your health. But with the war going on and the Army short on personnel you need to be ready to deploy at a moment's notice. But anything is possible. I was told that with my time in service and I'm so close to retirement they would not medically force me out, but anything is possible. Tell people they need to know their rights when it comes to a medical board for military personnel so they know what can and cannot be done so they can't be misguided. As I stated when it came time for my surgery because of all the information I had recieved visiting this website and reading the email traffic I was well informed and that's why I made the decision to go with the mechanical versus animal valve. I will start working on all the info you all provided me right away. I'm scared - I don't know what signs to look for. I know I'm very tired, short of breath at times, I have been experiencing chest pains but attributed it to my chest healing. I'm being over protective of myself. I'm by myself a lot except for my puppy. But you all have really blessed me and I'm so grateful to all of you. I will keep you posted and from now on I'll be joining in on the discussions because now I feel that I do have something to offer. Be Blessed

 

[Rich]

Please, please got on this right now.
I don't want to scare you but this could be very serious.
My wife's sister is on Coumadin for a different reason.
About a week ago her INR was at 1.3, the next day she suffered a massive stroke and her outlook for recovery is very poor.
Again this apparently was the result of poor management by her doctors.
Thanks to Al and others I manage and make adjustments on my own, regardless of what the doctor might say.
It's our lives at stake so we should be the 'boss' in this case.
Rich

 

[Guest]

I am glad that the Army has a sensible, flexible attitude toward warfarin. Just today I saw a truck driver who had a blood clot in his leg. Colorado wants to not renew his commercial driver's license because he is on warfarin. They worry that he could be killed in a traffic accident -- DUH! The rule boils down to him being be better off having a blood clot go to his lung and then having a wreck, than just having a wreck.

 

[Karlynn]

I'm trying to figure out what in the world Colorado's concern is. Chalk it up to a general freak-out over the deadly drug warfarin. It would be interesting to have Colorado define why they won't issue licenses to those who take warfarin. Could be a good (but sad) laugh.

 

[Guest]

My God! we can't have people driving 40 tons of steel and taking rat poison. Why they might even run over yours truly on his way to work.

 

[Susie Q]

Susie Q

Susie Q

I, too, have had problems regulating INR levels. The following is a summary of dosages & results:

On 12/05 after alternating 6 mg & 7 1/2 mg every other day for about a week, my INR level was 5.3. I was instructed by cardiologist to eliminate Coumadin for 2 days, then resume with 6 mg per day which I did until 12/17.

I didn't take Coumadin on 12/18 in preparation for Nerve Conduction Test. The next day INR results were 1.25 after being off dosage only 1 day. I was instructed to take 3 mg on 12/19, then 0 on 12/20. After Nerve Conducton Test on 12/21, I was instructed to take 6 mg immediately after test.

From 12/22 through yesterday (12/29) I took 7 mg as told. Cardiologist's nurse called with results today & INR was 1.2. I was told to increase Coumadin to 10 mg today & tomorrow, then go back to 7 mg dosage until next Thursday when I'll once again take blood work.

I have an ATS mechanical aortic valve. I've not noticed any unusual symptoms, except maybe an increase in hot flashes/ daytime & nighttime sweats which may not be related to INR levels in any way.

Any thoughts or concerns?

 

[Karlynn]

Miss Q
Stopping for 2 days for a 5.3 seems a bit extreme. I'm guessing that the 2 day hold dropped your INR significantly and when you went on 6 every day, it wasn't enough to push you back up. The low 1.25 the day after the skipped dose could not have been from the skipped dose in prep for your procedure, your INR was already too low from the 6 a day by the time you skipped the dose.

I would much rather have an INR too high, than too low. For me, it's much harder to get a low INR up to theraputic levels than to lower a high INR. You were on enough Coumadin that just a little tweaking probably would have brought you down from the 5.3. If it were me (and I take between 9 and 10 a day) I would have probably halved my dose that night and might have cut my weekly dose by 5%. It seems like a lot of doctors freak out at INR's and really love to skip doses. It works okay for people taking small doses, but when you get into the larger doses, your INR will drop fast from a skipped dose. Doctors make the mistake of following the same protocol for someone taking 14/week and 49/week, and that's a big mistake.

I would also not do the alternating days dosage system. Arrive at a weekly dose and follow that. It makes dosage changes less confusing. For example, if you are alternating 6 and 7.5's on the alternating days system that means one week your dose is 46.5 and the next week it's 48. I for instance take 67/week, 9 on M, W, F and 10 on T, TH, S, and S. If I need to raise or lower my dose, it's much easier to do that looking at what day I take what does every week. I had to lower my dose recently and I was taking 10 on M,W, Th, S and S and 9 on T and F. So I just took away a day of 10 and replaced it with a 9. Am I making sense here? A doctor would probably say, lowering by 1 mg a week won't do anything and try to make a larger adjustment, but I know how I react and knew that lowering by just 1 would most likely bring me into range - and it did.

Make sure you keep a chart or graph of your weekly dose and INR. This will give you a visual as to how your body reacts. Skipping 2 days and then going to 6 was taking your dose from 46.5-48 a week, to a week of 30 mg total. That's ~ a 38% decrease in your dose for that week you skipped the 2 doses. It's no wonder your INR was so low. Taking 6 a day after that week of 30 just wasn't enough to bring you back up and apparently nor was the 7.

With and INR of 1.2, I would test again on Monday to make sure it's going back up. If it is, then keep on the 7 and test again on Thursday.

Good luck!

 

[Susie Q]

Susie Q

Susie Q

Karlynn, thank you for your suggestions. Alternating days was the nurse's recommendation. I can understand why your suggestion of M, W, F and then T, TH, S & S would be more consistent. I do keep a daily chart of dose, time taken & INR results. I also printed the copy of the chart/graph you posted on another thread for reference. I appreciate your wisdom & experience.

 

[Karlynn]

Ps

Ps

Susie,
I just saw in your profile that your surgery was at the beginning of November. Your body is still healing and getting back to normal. Your dose of Coumadin will probably continue to creep up a bit as you become more active and your internal organs are past the shock of major surgery.