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Started 5 months ago in INR

Where to find..

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Started 5 months ago in Website Support

What does this mean

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Started 5 months ago in New Feature Requests

Make further website direction

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Started 10 months ago in Blood Clots

Other clotting- type websites?Please share any others you know of

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Started 10 months ago in Blood Clots

Anyone else been diagnosed w/APS/Hughe's disease?

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Started over 1 year ago in Other

What does "seperable lean" mean?

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Started over 1 year ago in Website Support

Chicken vit k discrepancies

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Started almost 2 years ago in Website Support

Difficulty working the vit k food database.Help?

Views 736   Comments 3


Started almost 2 years ago in Blood Clots

vit K supplementation to stabilize INRs

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Started almost 2 years ago in Blood Clots

About INR self testing machine/supplies

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Started almost 2 years ago in Blood Clots

Hughes disease (aka) antiphospholipid studies: does anyone know of?

Views 828   Comments 25


Comments

Commented on Therapeutic INR levels 10 months ago

How are things going now? It's been a complete months ?


Commented on Antiphospholipid Syndrome 6 months ago

FYI I have also listed other sites that are great... tap on my name to see other posts


Commented on Antiphospholipid Syndrome 6 months ago

Peanut oil is very low, so is corn oil. Good to use to make homemade mayonnaise and other things things I find. I am in NJ. Check youtube then substitute the oil you want to use for mayo. Let me know... email me as I find it hard to find responses on here. Wittycjt@aol.com


Commented on Where can I get an INR meter? 12 months ago

Do you use the the coag xs machine?


Commented on My history over 1 year ago

Have you been tested for APS?


Commented on PRADAXA 150MG 11 months ago

Are you in the US?


Commented on DVT whilst on Thinners 10 months ago

Are you in the US?


Commented on Other clotting- type websites?Please share any others you know of 10 months ago

Yes, I forgot that one🎈


Commented on Want to know why clotting blood with the 3.2 INR ratio 6 months ago

Are you diagnosed with a clotting disorder such as APS or factor V Leiden?


Commented on Antiphospholipid Syndrome 6 months ago

I too have APS. I made the mistake of trying to calculate every bite of food I put in my mouth...BIG mistake. My advice to you is to only adjust those foods high in vit k such as kale, spinach and mayonnaise ( as depending what oil your mayo is made with will decipher how much vit k it has) also you may want to avoid olive oil. Let your healthcare provider change your coumadin to your diet not vice versa. , wittycjt@aol.com where are you from?


Commented on Tracking Vitamin K over 1 year ago

Has this been redone and how does it work? Thank you for all of your efforts with this site.


Commented on Doctor says therapeutic at 1.9 over 1 year ago

Are you in range now, was dose adjusted, did they find a new clotting disorder?


Commented on Surprise it's a blood clot!! about 1 year ago

So what is the outcome?


Commented on Therapeutic INR levels 10 months ago

How is he doing?


Commented on Portal Vein Thrombosis 9 months ago

Try Dr Gourmet.com. Has good low vit k recipes. Good luck, let us know how it helps you.


Commented on inr unsteady 9 months ago

It is probably the figs, apricots and dates. Although they are not greens they do contain vit k. Check it out.


Commented on Coumadin a necessity for blood disorders! 8 months ago

You are absolutely correct Jaci, Bravo. Well said!


Commented on Omega-3 Changes 12 months ago

I take omega every day. Just makes me question as to the above... if I should be taking it. Although my INR is stable and constant! Now also thinking though I have been taking this as long as I've been on coumadin so this is probably why no change in my INR... sorry to have wasted anyone's time. Oops


Commented on Warfarin/Plavix combination - red/purple bruises appearing for no apparent reason over 1 year ago

So... how was your follow up visit?


Commented on Warfarin/Plavix combination - red/purple bruises appearing for no apparent reason over 1 year ago

Ps, I had open heart surgery with a mitral valve "repair" Feb 2015. They dischgd me without anti coags and I had a stroke 16 h later. I had paralysis of my left side and wasn't able to walk, etc Luckily I had good insurance and good self motivation. I rec'd a lot of occupational and physical therapy and learned to walk again not the best but walking. Still having problems with lt upper extremity but I am very determined to be "my" normal. Again my best of wishes for you!


Commented on Warfarin/Plavix combination - red/purple bruises appearing for no apparent reason over 1 year ago

I am glad to find out you are no longer taking the Plavix and Coumadin together as that is a very powerful combination. It is good they switched you to the aspirin with the Coumadin instead. I would guess the bruising is now much less. I hope your follow-up is what it should be, good luck


Commented on Vegetable oil in brownies over 1 year ago

How did you make out. Next time use corn oil!


Commented on Warfarin/Plavix combination - red/purple bruises appearing for no apparent reason over 1 year ago

So what did they find? It's a cliff hanger!


Commented on Surprise it's a blood clot!! about 1 year ago

Sounds to me: You are describing APS- AntiPhospholipidSyndrome, aka Hughes disease ( named after the doc who discovered it). Have them test you. If you have it you should definitely be on anticoagulants(aka blood thinners) as this can be life threatening.


Commented on Anyone else been diagnosed w/APS/Hughe's disease? 10 months ago

Just saw you wrote a post about a DVTS. There is another site I don't know if you are familiar with specifically for Hughes patients: healthunlocked. Let me know what you think.


Commented on DVT whilst on Thinners 10 months ago

Yes, it is. Call your doctor or go to the ER if need be. Especially if area becomes swollen, blue, or cold, no pulse!


Commented on Chicken vit k discrepancies over 1 year ago

But baked chicken has mcg? I don't understand?


Commented on Vitamin K in Beef about 1 year ago

Most meat, I believe is "low". Enjoy your steak!


Commented on Vitamin K in Beef about 1 year ago

Start with a sm amount of mcg for whatever type of beef you want,then keep it consistent from week to week. I can't understand why there were so many reviews to this but no one left a comment. So sorry about that;)


Commented on Therapeutic INR levels 10 months ago

Sorry meant mcg, damn spellcheck


Commented on Therapeutic INR levels 10 months ago

And it's a lot easier to keep track of. I believe if you look up instant oatmeal it is low too and if able you can make this with skim milk instead of water for calcium/protein. If you don't want it too hot, make in microwave with Half of the milk you'll want to use and when it dings off remove the bowl and add the rest of milk, stir and let it sit for a min or two to thicken up and it's no extra Megs w/ the "skim" milk😋


Commented on Therapeutic INR levels 10 months ago

Glad you find it worthwhile too, but I was actually sending this to Keegan. I am wondering if she is still interested?


Commented on Therapeutic INR levels 10 months ago

Haven't heard back from you. Are you still there? I have found a very good website: Pt/INR.com. Go here, on the left you will see "food interactions" and other informative information. You will also see"vitamin k finder" on the top middle of the site page. Just another avenue with information besides INR tracker. Let us know what's happening


Commented on Chicken vit k discrepancies over 1 year ago

Fried chicken has zero?


Commented on Therapeutic INR levels 10 months ago

I try to limit my veggies to dinner time only, then I can usually eat what I want for breakfast and lunch without my INR jumping all around. Just keep veggie mcg the same. I used to really only like fresh veggies but find it is easier for me when I stick with drained canned veggies. Measuring my intake is easier this way. For instance: Canned baked beans are 2mcg per cup. Canned green beans are 13.4 mcg/cup, drained. Canned carrots are 14.3/cup, drained.I usually have the same amount of mcg daily. I take 12.5 mg of warfarin daily. I find this works for me. Weds is ordered pizza night for me and I can have 3 slices and be safe. Also, Luckily I like peanut butter and preserve sandwiches(very low in mcgs). Hope this helps. Why is he on the warfarin?


Commented on how much vitamin K intake on warfarin 5mg/day 12 months ago

You provide a wealth of info, thanks. I am going to check the coumadinbms website now. Thanks!!!b


Commented on Warfarin/Plavix combination - red/purple bruises appearing for no apparent reason over 1 year ago

What does FBE stand for? I am only taking Coumadin but would like to switch to Plavix. My dose is 12.5 mg daily. I can't stand restricting my leafy veggie intake, esp with summer coming.


Commented on Warfarin/Plavix combination - red/purple bruises appearing for no apparent reason over 1 year ago

Those are powerful anti coagulants. I would ask the people doing your study or a hematologist. Let us know what happens, good luck.


Commented on How do I enter changing coumadin dosage 4/4/6/4/4/6 mg repeating over 1 year ago

Your question is not clear. I don't understand what you are asking. Usuall your dr will chg your dose based on you INR.


Commented on Warfarin/Plavix combination - red/purple bruises appearing for no apparent reason over 1 year ago

How much Plavix are you on? Y was your valve replaced?


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

One suggestion or comment. Can the referral websites be made into blue colored areas where you can just tap on them to get to the websites depicted in the statement? This would be so much more user friendly for me (sorry I'm being selfish) but I think others would appreciate this also. Maybe a link for a description on how to do this for those contributing a response😃 Thank you


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

Hmmm I question that? I had a child 30 yrs ago accompanied by a TIA ( mini stroke) and no problem for 27 yrs, after no meds, no life adjustments at all then WHAM: headache, followed by a massive stroke, and diagnosed with APS


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

How did you make out?


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

Do you know what brand of machine this/these were?


Commented on My Name is Veronica, Co-Founder of INR Tracker, and I have a blood clotting disorder. Ask me anything. about 2 years ago

Curious, what is the difference of above?


Commented on About INR self testing machine/supplies almost 2 years ago

Well as usual I must be the rarity... Have been using INR machine twice weekly and also having it done by the lab draw at the same time. Might be off by about 1/10 of a point: eg: FS=2.2 lab=2.3, FS=2.4 lab=2.3. Machine costs $$$, strips are $15/each and 6 arrive through the mail at a time. When down to just 3 strips I purchase more strips through the company I call my FingerStick numbers to (who then call my Dr). You need a prescription to begin, then my insurance pays. The machine can also be leased monthly. They are stored at room temperature and must avoid being too hot or too cold


Commented on INR 9.0 no warfrin x2 days over 1 year ago

What are you eating now?


Commented on Vitamin C and coumadin over 1 year ago

Take 1/2 tab daily and it has not affected my INR, it is probably based on the individual. My 1/2 tab is = to 250mg. You may have to try a trial and error☺️


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

How long were you on the Xeralto? They are doing a gov study on Xeralto for people w/APS now. It should be complete next Dec(2016)


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

Igg, Igm, cardiolipins, and specifically for "antiphospholipids". There might be others but I can't recall, sorry😞. I wouldn't wait on calling your Dr ASAP regarding this. Check out my history. I didn't know I had this until I had stroke. Let us know how you make out. I "assume" your warfarin is working, when you call about the other tests, ask him/her, again call ASAP so they can care for you correctly. Too much or to little Coumadin/warfarin can possibly harm you or worse... Don't wait. I hope the best for you🤓


Commented on INR 9.0 no warfrin x2 days over 1 year ago

The canned spinach for three days would be my guess. I have been prescribed 10 to 12 mg , this warfarin dose of yours doesn't seem high to me😊... Also, I do understand your concern. When I first came to this site, I thought I had a high dose also, but I followed the doc's advice, avoided green leafy veggies that were high in vit k, and can say I am now therapeutic. I hope you well, let us know.


Commented on Dr won't give Rx for lab tests or Warfarin Rx almost 2 years ago

Be careful: depending on what you are taking the coumadin/warfarin for, such as antiphospholipid syndrome, these machines are inaccurate.


Commented on Dr won't give Rx for lab tests or Warfarin Rx almost 2 years ago

Sounds to me no one wants to take responsibility. If you visit an emergency room and they dischg you they "have to give you a referral to the "on-call"physician (in NJ, this is the law), ask for a neurologist "on-call for the day you visit theER, then call him/her up for appt. if they were "on-call" they are required to take you. Good luck😊 ask if this is the same for state in which you are in... You can call the ER on the phone and they can tell you prior to your visit there!


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

Where can I view this or any info that is being looked at? Thanks😊


Commented on Difficulty working the vit k food database.Help? almost 2 years ago

I was actually trying to post it to the website support, how did you get it?


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

Thank you, anything on the horizon for APS patients on warfarin? Anything being studied?


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

What do "moderate" positive cardiolipns mean for someone diagnosed w/ APS?


Commented on INR 7.5 & bi-pass surgeries about 2 years ago

Any information on capsicum, krill and or nattokinase for keeping blood thin/avoiding clots, etc? I have read about these on Other sites as to be beneficial? Any truth? To this?


Commented on Really Low INR almost 2 years ago

Please look at my post, "Pavan" responded about a vit k article that may be beneficial for you to read. I am not real tech savvy or I would try to repost it right here for you. It is on my post about Hughes studies. Hope this assists you😊


Commented on My Name is Veronica, Co-Founder of INR Tracker, and I have a blood clotting disorder. Ask me anything. about 2 years ago

What is your history, y r u on this website?


Commented on My Name is Veronica, Co-Founder of INR Tracker, and I have a blood clotting disorder. Ask me anything. about 2 years ago

This site is a much needed friend! Thank you. Question: How do I find someone's history of their posted DIS Ease ?


Commented on My Name is Veronica, Co-Founder of INR Tracker, and I have a blood clotting disorder. Ask me anything. about 2 years ago

Where's Obama when you need him 😜. I believe if you call your local county' s SS office (if you live in the US) they can direct you on a sliding scale clinic. I hope you find this to be a successful avenue. Also the hospital should be able to direct you prior to your dischg, I believe that's what the case mgr is there for


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

I was told they are inaccurate for APS, is this not correct?


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

Which drugs, all? This is vague? Thanks


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

I'm on it , going to look at it now Thanks😀


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

Jan of this year had a stroke, at that time I was diagnosed with APS, had heart surgery to remove a "vegetation" growth (done at Mt Sinai in NY) they dischgd me without any anti coagulants, the following morning I had another stroke effecting my left side: paralysis and unable to walk. I am 53 years old. After much rehab and hard workI am ambulating again. I have been taking coumadin (warfarin) since Feb. the doctors are trying to keep my INRs between 2 and 3. I take 12.5 mg of coumadin alternating with 10 mg depending on my INRs that I have done two to three times/week. Thank you for any assistance. Keeping ahead of the vitamin K has been difficult, I have lost 20 pounds. Any studies advocating meds that do not have to be concerned about Vit K that have been successful is what I am looking for. Thanks...all


Commented on Hughes disease (aka) antiphospholipid studies: does anyone know of? almost 2 years ago

The new anti thrombotics coming out now eg: Xaralto, Eliquis, etc


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