I have severe protein C . Diagnosed in Nov 94 . My PT has been like a pogo stick the last couple of months . The previous 3 of the last 4 inrs was too thinned out .Todays labrat work said I now am too low (2.18) . My INR is kept 3 to 4 and is closely monitored by an internal medicine specialist. just getting abit frusterated.
Are you keeping your intake of Vitamin K containing foods consistent? Vitamin K is an "antidote" if you will, for warfarin. If you dont keep your intake of vitamin K containing foods consistent, your levels will be all over the place.
Vitamin K should not be avoided completely. It is a necessary component in everyone's diet, including those of us who take warfarin. What we want to do, is to keep the daily/weekly intake consistent.
That aside, Vit K isn't the only thing that can change your INR/PT.
Other changes in diet, like proteins can change it. Changes in physical activity, such as exercise, can change it. Illness can... natural aging... body mass... other meds...
Discuss your frustrations with your internist. One question you might ask is, whether it's good to keep such a high INR for so long. Whether the level is in the therapeutic range, depends on several items too. Our needs change with time. Your internist will have the answers to quell the frustration. Also, the internet, including this site, has a lot of information available.
Good luck, and please let us know how it goes. You're not alone, or this page wouldn't be here.
shalom72c I was diagnosed in 98 w/ genetic type 1. After suffering 2 DVT's first in right thigh, 2 weeks of hospital I returned home for less than 24 hours I had a clot in the upper left leg. My protein C levels are 52% when I finally went to the hospital with the 1st clot. I had a team of doctors trying to treat my disorder. I was on Coumadin throughout, no other medications were attempted. My PT's and INR's were erratic, then I suffered a debilitating stroke during Coumadin therapy. INR as high a 7.5 & low as 0.5., my PT immediate. Edema also set in, my legs were 27 inches, the size of my waistline. 5 times I needed emergency infusions which had healthy protein c, then my INR would spike. I figured out why and informed the team the blood infusions balanced protein C for about 3 days. After 11 months I was told to get my affairs in order, no more could be done for me. 2 months later I searched the globe for life saving help.
I found help in a professor's research on the disorder. He explained protein c often doesn't respond well to warfarin. He immediately started me on low molecular heparin, aka Lovenox. No vit K. Since 1999 I suffered 2 clots, one I missed my Lovenox injection, the second I allowed a dr. who said my vit. k was too low to give Vit k, I refused 13 mcg,.I accepted 1 mcg, within 4 hrs I had clotted in my jugular. The professor impressed upon me that the diagnosis is made by GP's but treatment for the disorder is very limited to diagnosis. I have been very stringent as he impressed before we parted ways. Lovenox and research saved my life. With Lovenox there is no constant blood tests to watch and juggle INR or PT.
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