Patient survey New patient education video Facebook Twitter www.onxlti.com
Results 1 to 15 of 15

Thread: PT/INR Clinic response to my high INR

  1. #1
    Join Date
    Feb 2009
    Location
    Texas
    Posts
    197

    Question PT/INR Clinic response to my high INR

    Ok, well I've been on coumadin for almost 9 years now.. but as you all know it can fluctuate no matter how long you are on it.. so I've been on 10mg every day except 7.5 twice a week and it seems like every month when I go to the PT Clinic I am either too low or too high.. Last month I was a 2.2, now yesterday I was a 4.4. My response from the PT clinic nurse was to take 5 last night and 5 tonight and check back next month. Now, this is exactly why I think I could benefit from testing at home.. I could've been too high for a month now right? When I lived in another town the clinic would stay on top of it.. if I was too high, they'd adjust and say go back in 1 week or so, but this clinic always says check back in a month, even if I'm too high or two low.. frustrating!

    Also, I've noticed when I'm too thin, I am cold in temperatures that I shouldn't be.. I'm normally not cold natured, but the days before I had my blood drawn the house was about 75 which normally is too hot for me and I was so cold I was wearing socks & a sweatshirt.. does anyone else get like this?
    Kristen - age 33
    ASD Repair - 1/1997 age 17(Dr. Ott St. Lukes in Houston)
    MV Repair 1/2000 age 20, 1 week later- MV Replacement - 1/2000 - St Jude's mechanical valve(Dr. Ott, THI at St. Lukes in Houston)
    3 yr old Son - BAV (Bicuspid Aortic Valve)
    twin girls - 2 months old through surrogacy

  2. #2
    Karlynn Guest

    Default

    If they're making a change in your dose they should test you again in a week. You're right - you could have been too high for a while. More scary for most of us is that you could be too low for a while without knowing. Home testing is the best! And more and more information is coming out about it being the best way to remain safe on Coumadin.

    Your blood's thickness doesn't change (see the sticky http://valvereplacement.com/forums/s...ad.php?t=17116 ), so being cold because your blood is too "thin" isn't a possibility. Coumadin doesn't physically cause your blood to be thick or thin. It's just poor terminology used by the medical field to describe the drug's actions. That being said - some people do report being cold, or being able to tell if your INR is too low. So your coldness with a low INR is in the realm of possibility. I've never been able to tell if my INR is too high or too low. I can't even tell by how easy or difficult it is to get a drop of blood for my test. Sometimes the blood will just come right out and I'll think "Wow, it's going to be high." Only to find out I'm in range or too low. And the reverse has happened as well.

    If you can get a monitor and home test - do it!!! You'll feel so free. QAS (banner at top of some pages) will do the leg work for you with your insurance. You'll need a prescription for it from your doctor and hopefully he/she will be receptive. If he/she isn't have them view the videos in this sticky http://valvereplacement.com/forums/forumdisplay.php?f=5

  3. #3
    Join Date
    Jul 2007
    Location
    New Mexico
    Posts
    4,757

    Default

    Your clinic told you right, to take 1/2 of your normal dose tonight. I, however, would resume my usual dose tomorrow but do as the clinic says if you want to.

    I also check my INR every week with my home monitor & so I'm able to be on top of it sooner if it's either too high or to low & then do the adjustments & check it again in about a week. I can also relate to you feeling cold when your INR is on the high end; that's kind of the way I feel too. Although, doctors & others say that one cannot feel any different one way or the other but I sure can, & I've been on coumadin for over 30+ years!

    My dose was 10mg every day & 2 days of 7.5 like yours but now I've had to change it to 10mg for 6 days & 7.5 for one day in order to keep it within 3.0 - 3.5. I kind of prefer the lower 3's anyway! I would almost feel compelled to advise you to do this too if it weren't for the fact that you have to wait 1 month before you test! To me that's too long!

    Hope you get back in range soon & if you haven't already, tell, don't ask your doctor, that you want to get a home monitor because it would certainly be so much easier for you & more reliable.
    Best Regards,
    N Jean

    May/1975: AVR & MVR -- St. Luke's, Houston TX (Denton Cooley, Surgeon)
    Dec/1975: MV Repair -- St. Luke's (Dr. Cooley)
    Mar/2006: AVR -- St. Luke's, Houston TX (George Reul, Surgeon)


    "Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less."
    - Marie Curie

  4. #4
    Join Date
    Jun 2001
    Location
    Arizona
    Posts
    1,685

    Default Dangerous instructions

    Waiting a month is definately wrong. The usual protocol is to test in one week.

    Several years back, my husband's INR was 4.1. He was instructed to hold for a day and test in a month. The day before he was to test, he had his first of three strokes. We were not home testing then.

    Since your clinic or dr.'s office is giving you dangerous instructions, you might want to consider home testing for sure.

    Blanche

  5. #5
    Join Date
    Feb 2007
    Location
    East Ontario, Canada
    Posts
    12,611

    Default

    I would take a half dose tonight....and definitely test again next week.
    How else are you supposed to know if the correction has indeed worked.?
    BAV-Aortic Stenosis...AVR Oct 11, 2005 / St.Jude Regent mechanical 21mm
    INR Home testing since 2007 with Coaguchek XS...Self-Dosing

    "Caution: I may have been in contact with Nuts"

  6. #6
    Karlynn Guest

    Default

    Quote Originally Posted by njean View Post
    if you haven't already, tell, don't ask your doctor, that you want to get a home monitor because it would certainly be so much easier for you & more reliable.
    Good point Norma! And if he says "I don't have anyone that home tests.", then you say "Looks like I'll be your first! "

    I was the first home tester for my cardio. She has since started several of her patients on home testing.

  7. #7
    Join Date
    Jul 2007
    Location
    New Mexico
    Posts
    4,757

    Default

    I too became one of my cardio's first patient's to home test. Since then, a number of his patients are home testing. I almost felt like a pioneer!!
    Best Regards,
    N Jean

    May/1975: AVR & MVR -- St. Luke's, Houston TX (Denton Cooley, Surgeon)
    Dec/1975: MV Repair -- St. Luke's (Dr. Cooley)
    Mar/2006: AVR -- St. Luke's, Houston TX (George Reul, Surgeon)


    "Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less."
    - Marie Curie

  8. #8
    Join Date
    Feb 2007
    Location
    East Ontario, Canada
    Posts
    12,611

    Default

    Right on. I called Roche, armed myself with their pamphlets and showed them to my GP.
    He was very impressed and has continued to be impressed by my in-range INRs and knowledge from VR.com
    BAV-Aortic Stenosis...AVR Oct 11, 2005 / St.Jude Regent mechanical 21mm
    INR Home testing since 2007 with Coaguchek XS...Self-Dosing

    "Caution: I may have been in contact with Nuts"

  9. #9
    Join Date
    Feb 2009
    Location
    Texas
    Posts
    197

    Default

    Ok, I printed out some forms for my cardiologist to sign so I can have a prescription to give my insurance. I'm just really disappointed in this clinic and I will probably be living in this town (my home town) for the rest of my life and I'm actually starting a new job at the hospital next week in the E.R. while going to nursing school... I can however compare my experience at my current PT Clinic to another clinic I went to when I lived in another town.. I loved the staff and they were always "on top of it" for me, but this lab is completely different and if I'm out of range they change what I'm taking that day and then say "See you in a month"! I REALLY hope to get a home testing machine.. I have been wanting one for quite some time now, but have had my insurance turn it down in the past.. so I'll try with my husband's insurance..

    Norma, I am telling you, I truly think for me that I get cold when my blood is too thin, and that I get dull, annoying headaches (not migraines) when my blood is too thick.. Everyone is different, but after years of being on coumadin, I think I'm able to relate some of my minor symptoms to the way I'm coagulated. Even if it may not scientifically be true maybe we're just a little crazy, lol

    thanks for all the responses!
    Kristen - age 33
    ASD Repair - 1/1997 age 17(Dr. Ott St. Lukes in Houston)
    MV Repair 1/2000 age 20, 1 week later- MV Replacement - 1/2000 - St Jude's mechanical valve(Dr. Ott, THI at St. Lukes in Houston)
    3 yr old Son - BAV (Bicuspid Aortic Valve)
    twin girls - 2 months old through surrogacy

  10. #10
    Join Date
    Dec 2001
    Location
    On The Hot Seat
    Posts
    25,981

    Default

    Quote Originally Posted by TXGal View Post
    my blood is too thin, my blood is too thick..
    Blasphemy!

  11. #11
    Join Date
    Feb 2007
    Location
    East Ontario, Canada
    Posts
    12,611

    Default

    Quote Originally Posted by Ross View Post
    Blasphemy!
    Hi Sweetie Pie.
    BAV-Aortic Stenosis...AVR Oct 11, 2005 / St.Jude Regent mechanical 21mm
    INR Home testing since 2007 with Coaguchek XS...Self-Dosing

    "Caution: I may have been in contact with Nuts"

  12. #12
    Join Date
    Mar 2003
    Location
    North Alabama
    Posts
    6,910

    Default

    If your clinic *refuses* to re-test you in 1 or 2 weeks, I suggest asking one of your Doctors (PCP or Cardio) to 'order an INR', preferably in 1 week.

    You might even want to suggest he recommend more frequent testing following a Dose Change to the Clinic Director which would help everyone who uses that clinic.

    Sadly, INR testing was introduced over 15 years ago to improve the reliability of anti-coagulation management and the Medical Community is STILL struggling to 'get it right'. SHAME!

    'AL Capshaw'

  13. #13
    Join Date
    Feb 2009
    Location
    Texas
    Posts
    197

    Default

    Quote Originally Posted by ALCapshaw2 View Post
    If your clinic *refuses* to re-test you in 1 or 2 weeks, I suggest asking one of your Doctors (PCP or Cardio) to 'order an INR', preferably in 1 week.
    I actually have a card so that I should be able to just walk up to the lab any time I want and get my blood drawn. I never have an order, just show them my card and no questions asked.. I think I'll just go in a week and get my blood drawn anyways and when the nurse calls to give me my results I'll tell her that I thought waiting a month was ridiculous. I don't think I should wait a month until my blood is regulated.. wouldn't you say so?
    Kristen - age 33
    ASD Repair - 1/1997 age 17(Dr. Ott St. Lukes in Houston)
    MV Repair 1/2000 age 20, 1 week later- MV Replacement - 1/2000 - St Jude's mechanical valve(Dr. Ott, THI at St. Lukes in Houston)
    3 yr old Son - BAV (Bicuspid Aortic Valve)
    twin girls - 2 months old through surrogacy

  14. #14
    Join Date
    Feb 2007
    Location
    East Ontario, Canada
    Posts
    12,611

    Default

    Kristen, right on. You will be safest when you learn about and take charge of your own anticoagulation.
    BAV-Aortic Stenosis...AVR Oct 11, 2005 / St.Jude Regent mechanical 21mm
    INR Home testing since 2007 with Coaguchek XS...Self-Dosing

    "Caution: I may have been in contact with Nuts"

  15. #15
    Join Date
    Jun 2001
    Location
    Tucson,Arizona
    Posts
    282

    Default

    Can anyone spell "Peace of mind" on being in range! A recheck in 1 week would definately put me in a better peace of mind knowing what the results are!
    azpam

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •