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We need your help for a research project at Oxford University...

sian1979 profile image
21 Replies

Hello, my name is Sian and I am a researcher at Oxford University. We are planning a project to see if vitamin K supplements can help people on warfarin who have variable INR. We would really like to hear the thoughts and views of people on warfarin.

Do you think this project could be helpful?

Do any of you take vitamin K supplements?

If we found it was helpful, would you consider taking vitamin K supplements after discussion with your doctor?

Is there anything else you would like to tell us about that could help us with this project?

Thank you very much for your help.

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sian1979 profile image
sian1979
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21 Replies
knightrider profile image
knightrider

There has been some work already done on this, although with very small numbers of patients. It would seem that larger, higher quality research/trials are needed to examine if vitamin K supplements improve INR control. Would be interested to know what numbers of people you are thinking of?

Generally it would also help if consistent advice was given to patients. Some are still being advised not to eat dark green vegetables by their HCP.

sian1979 profile image
sian1979

Hi Knightrider, thanks for replying. We carried out a review of the work that has been done in this area and you're right, previous trials have included small numbers of patients. We are looking to recruit 460 patients from 120 GP surgeries across three different regions. This number of patients will tell us whether vitamin K makes a difference to INR control. I agree that consistent advice is important. This study will give us much better information about how to advise patients regarding vitamin K.

callum19 profile image
callum19 in reply to sian1979

Can I have your contact details to give to my gp to see if he's interested in it as bot appointment. My inr has collapsed from 2.2 to 1.3 what could of cased it I'm on antibiotics 8000mg daily for chronic cellulities. Thanks robbie

IanredUK profile image
IanredUK

I would be interested in this study. At home I tend to eat a reasonably healthy diet that includes at least 2 portions of dark green veg a day and I am able to keep my INR in range.

However when traveling on holiday or with work I find it much more difficult to get any significant quantity of vegetables of any colour and find that my INR does fluctuate. Perhaps Vitamin K supplements may help in this case.

sian1979 profile image
sian1979

Hi Ianred, thanks very much for your post. I can understand the difficulty of keeping in range when you are not in your usual routine. If vitamin K could help at these times, it could be of great benefit to lots of people. If the project gets funding, we will ensure that our results are freely available to all.

romkin profile image
romkin

My INR seems to have fallen from 3 to 1.8 from leaving hospital monitoring to G.P. monitoring.I have had the warfarin increased slightly to try and get it back over 2. Perhaps my diet as altered from being discharged from hospital and I need to adjust it and also await the results of my next test in a fortnight.However if it does improve but then does not stabalise I would be interested in joining your project.

Regards

Roger Arthur

greenrob profile image
greenrob

I would be happy to volunteer for this study .My INR is like a yo yo inspite of controlling what I eat .My saviour has been my Coagucheck self monitor, which has stopped me going below 1.8 and above 4 for the last 2 years.

sian1979 profile image
sian1979

Hello romkin and greenrob. Thank you both for taking the time to respond. It's really encouraging to hear that you would be wiling to take part in this study. We are not actually looking to recruit volunteers through this site as we have to go through certain GP practices in certain towns. However, we feel it's really important to get the views of people like yourselves to make sure we design the project in the best way and we have thought of all the possible issues. If we secure some funding and the project goes ahead, the findings will be made publicly available so that patients and health care professionals have the best information to make decisions about INR management.

Thanks again

Sian

Tipper profile image
Tipper

I'm struggling a little with this one.

Why suggest the taking of another 'drug' (vitamin K) when the problem is caused by taking too much of the one you have to take (Warfarin) which results in a raised INR?

Surely the best tactic is to monitor your INR and vary your warfarin dosage accordingly. This is what I do, on a weekly basis, and find no need for vitamin K to maintain my required INR level.

nissanjean profile image
nissanjean in reply to Tipper

Hi Sian

I would be very interested. Can you please count me in.

Jean

knightrider profile image
knightrider

Hi Sian

Thanks for you answer to my reply.

We would be happy to publicise your results when they are ready on the AntiCoagulation Europe website and also in our magazine InReview which is for patients and HCPs.

You can contact me on anticoagulation@ntlworld.com

sian1979 profile image
sian1979

Dear Tipper

Many Thanks for taking the time to respond and comment on our research proposal. You make a good point about having to add in another drug. However the idea being that a low dose of vitamin K could stabilise your INR therefore meaning less high doses of warfarin, less visits to your practice and therefore less blood tests. This could improve patients' quality of life (say for example those that are housebound, disabled, don’t like blood tests and needles). There could also be a cost benefit to the NHS in reducing these interventions. You may also be a warfarin taking patient that has a fairly stable INR and therefore your monitoring is quite regular. There are some people on warfarin who have very irregular levels of INR and therefore warfarin doses and these people may benefit from this simple intervention.

Your points have been very helpful and I do hope you will offer to stay in touch with us so we can share more ideas of the project with you and hear your views.

Kind regards

Kamal (Project Lead)

Tipper profile image
Tipper in reply to sian1979

Thanks for your reply. I'm still a little perplexed by your suggestion of a low dose vitamin K regime. As I understand it warfarin reduces the action of vitamin K in the normal production of coagulant thus resulting in a raised INR which is what we who have to be on ACT need.

Taking a low level vitamin K dosage will lower INR and require a correspondingly higher warfarin dose to achieve the target INR and I suspect more testing and variation of warfarin doseages.

Fortunately I've never needed vitamin K intervention due to high INR and plan to not need it in the future.

I will be interested in your findings.

qbuster profile image
qbuster in reply to sian1979

I would be interested to learn more about this potential trial. I self-monitor my INR with a Coagucheck and also take great care to monitor my intake of high-K foods like dark green vegetables (notably spinach & kale) and my consumption of alcohol (no more than 2 pints of beer/day usually less.

I suspect that many people don't realise how some foods and a varied consumption of alcohol can effect one's INR. If unaware, it is easy to eat an 'overdose' of spinach (the recommended daily dose of Vit K is 30mcg - on 180g cup of cooked, drained spinach contains 900mcg (over 1,111%)! That's quite a dramatic difference and as someone who considered spinach as a favourite vegetable, I could quite easily enjoy 3 cups.

jaxta51 profile image
jaxta51

I'm a little late to this discussion but if your research goes ahead hopefully you will continue to monitor responses.

I had a DVT 2 years ago after fracturing a bone in my foot. I was initially put on Clexane injections alongside Warfarin until my INR was stable. I am vegetarian and I eat a lot of green vegetables - all sorts of vegetables in fact. My diet is quite varied and doesn't necessarily follow a regular pattern. Perhaps because of this, it took a long time to get my INR into the target range of 2-3; I had to inject myself with Clexane every day for 6 weeks. Eventually my INR crawled reluctantly into range, but only when my Doctor had, in desperation, increased my dose to 11mg. Clearly I was not the average Warfarin patient.

Things were further complicated by recurring toothache, wrongly diagnosed initially as an impacted wisdom tooth but eventually (when I was off the crutches and could get to my own dentist) proving to be an abcess. I had three courses of antibiotics over a period of 2 or three months which further disrupted my INR. Eventually we settled into a routine of weekly blood test as this was the only way to ensure I stayed in range.

After 6 months of Warfarin I was able to come off the drug, and - fingers crossed - have had no further problems. I made a graph of my INR and Warfarin dose - it looks like a mountain range! I think if a low dose of vitamin K had been available to me, it might have been a useful tool in stabilising my INR - something that was never completely achieved during my treatment. I presume it would (hopefully) work by providing a 'baseline' level of vitamin K in the body to compensate for normally fluctuating levels caused by diet or other factors. For those who maintain a steady INR week in and week out this is of little value, but for anyone with a similar experience to myself I think it could prove very helpful. I hope you get your funding and the research goes ahead.

sue_b profile image
sue_b in reply to jaxta51

Thanks for sharing your experience. Do you still monitor your INR at all?

jaxta51 profile image
jaxta51 in reply to sue_b

Hi Sue_b, I'm hoping your response means that there is now some funding for this project? I was fortunate in that my DVT was (hopefully!) a one-off and consequently I completed my course of Warfarin after 6 months (in September 2013) and have not had to return to it since. I was relieved to reach the end. It was very scary to be diagnosed with the DVT and my ever-fluctuating INR meant little peace of mind during that 6 months. I know Warfarin works well and predictably for many people but I never felt it was working for me. Rather than instructing me to adapt my diet, which would have been fairly challenging and disruptive, my Doctor took the approach of increasing my dose until my INR stabilised but over 6 months that really never happened. Consequently I was back to the surgery for blood tests most weeks and took up a lot of my GP's time, which could have been saved if my INR was stabilised. Let me know if I can contribute anything to your research.

sue_b profile image
sue_b in reply to jaxta51

Sorry to disappoint jaxta51, I am not part of any research project, just another 'patient' trying to understand what is happening in my body by reading what has happened to others. Sounds like Warfarin did the job but of course you can self test your INR if you have ongoing concerns. Best of luck to you.

jajaja profile image
jajaja

Q. Do you think this project could be helpful?

Yes -- I have a worryingly variable INR, and am shocked by how long the GP's software suggests I can safely go between tests

Q. Do any of you take vitamin K supplements?

No -- but I will look into it now!

Q. If we found it was helpful, would you consider taking vitamin K supplements after discussion with your doctor?

Absolutely!

Q. Is there anything else you would like to tell us about that could help us with this project?

I am told that it is safest for me to stay on warfarin, but I wonder to what extent the newer drugs are likely to take over for most people.

sian1979 profile image
sian1979

Dear jaxya51 and jajaja

Thank you both for taking the time to reply. We're pleased you see the value in the proposed research. We have now submitted our funding application and will notify this forum of the outcome.

Kind regards

Sian and Kamal

mikel46 profile image
mikel46

I was warned that vitamin K was to be avoided due to effect on INR levels whilst taking Warfarin...A warning repeated in information given in drug boxes.

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