Calorific Intake Affect on Warfarin

I've talked before about the relationship with my calorie intake and warfarin, and here are some more conclusions and a time line.

Anyone that has ever tried to go on a calorie controlled diet will know that it inevitably becomes a low carb diet.  It's almost impossible to fill your stomach and feel satisfied with food by eating carbs, so you end up eating more veg and meat.

Here is a rough timescale of how my dieting went this year, and how it affected the INR:

The whole of 2012: My average dose was 7.6mg
2012 up to January 12th: My average dose was 8.5mg
--Diet starts on January 12th.  Calorie controlled, nutritionally balanced diet, low carb--
Jan 12th - Jan 31st: My average dose was 9.5mg
Throughout February: My average dose was 10.1mg
--Diet "back to normal" - eating whatever takes my fancy.
Throughout March: My average dose was 10.9mg

Throughout April: My average dose was 9.2mg

Throughout May: My average dose was 9.0mg
Throughout June: My average dose was 8.6mg
--Diet starts again... time to reduce weight a little--

I have now proactively increased my dose to anticipate a higher dose requirement on the lower calorie diet.

My conclusion of the above:  Dieting in this manner has a medium-term effect on the way your liver deals with the warfarin.  The dose slowly rises during the diet (over a month or two) and then slowly goes back down after you end the diet (over 3 months).

This shows just how much diet can change your dosing, and how important it is not to consider that you simply have "my average".  This average can change over time.

This is further reinforcement that a self-tester should be testing regularly, and using as much knowledge as they can to anticipate correct dosing.

May 29 2012 - Holiday in Venice

For this holiday I drank zero alcohol, i wanted to see if it was a factor on my usual holiday INR Highs!

For anyone that has visited Venice you will know that you spend the whole day walking.  Fair enough, but tiring. On the first day, after 12 hours of walking, my muscles were aching and I was feeling tired.  We pushed on, and then I got a sudden stabbing pain in my foot.  I literally could not walk, and it got worse and worse as I limped home.

This was still hurting like crazy 5 days later.

Warfarin related?  Who knows - but i think so.  Some form of a bleed in my foot caused by excessive exercise.

Why was the INR high?  Equally - I don't know.  Stress of Travel?  Altered Diet?  Maybe.

March 23rd 2012. Why low?

This kind of thing still randomly happens sometimes:

And I still have no idea why! Literally nothing noticable changed in this case.  In my mind, this is just something that proves to me that Warfarin is not a stable drug.  Not with me, anyway!

This kind of thing still randomly happens sometimes:

I had a 45 minute phone call with my GP's partner.  Not my original GP I might note.  She had a totally different attitude to him, and was happy to sponsor my own self testing and dosing.

She explained that not everyone was suited to it like myself, and apologised for the hassles the old system offered.

I now have PT Test Strips on Prescription as required for testing every 2 days.

In return so she can ensure I am operating safely, I have to submit a print out of my Warfarin diary every month, and go for a full blood test every 6 months.   (Not another finger-prick test i might add).

What a total victory!!

March 2nd 2012. Fed Up.

I finally got totally fed up with having to go to the pharmacy for tests and decided to write some strong letters to the pharmacy, the GP, my cardiologist and the head of clinical services.  I'm taking exception with the fact they ignore my own results and then make incorrect dosing decisions based on a single snapshot test.

Here's my letter:


Dear Dr. XXXX,

I wanted to write this letter to let you know my situation, and intentions in regard to my Anticoagulant therapy.

I have in fact been self-testing and self-dosing for coming up to a year.  I adjust my own dose regularly to take into account lifestyle changes, and I do not inform the pharmacy of these changes. I have bi-daily records of tests and daily doses for every single day since therapy started, and statistics that show a very successful INR in-target for this time. I have carefully researched Warfarin management across the world, and across the UK, and believe that my Warfarin is managed better than could ever be achieved through spot checking.  I am part of the Oxford University CASM Anti-coagulant self-monitoring study group, and take an active part in discussions with other Warfarin self-testers across the world through the internet.  I note that the original concept of bi-daily testing and self-management came from my Heart Surgeon who I quite literally trusted with my life and will follow his advice to self manage Warfarin.

My intention is to officially be recognised as self-managing my Warfarin, something that is happening across the UK and already yielding fantastic results.  I have a friend in Wales who does this, and another in Essex - I attach the NHS Policy from the Essex area which I would be delighted to follow.  I am looking to visit a health professional for testing no more than every 6 months.  Note that whether officially recognised as self-managing or not, I will continue to do so regardless, but I believe it is in every ones interest for honesty and openness and working together for the best results.

I recently missed several appointments and was chased up as if my life were in danger, with no recognition that I self test - and then my Warfarin was withheld unless I took a test.  I question the legality of this, as withholding the drug from me puts my life in jeopardy.  I now have 2 months supply of tests and Warfarin and hope that I can resolve the situation in this time, as I have no intention of attending any further appointments.

As an active 33 year old on Warfarin for the rest of my life it is critically important to me to resolve this situation and free me from the constant chore of visiting the pharmacy for tests that serve no practical purpose other than to follow a published policy.  It is causing me considerable stress and causing problems with my working hours.  My intent is to officially establish my position of a warfarin self manager, and I am now embarking on a letter campaign to make this become a reality.

I have also written a very similar letter to XXXX at XXXX (Pharnacy) and Dr.XXXX  (Medical Director of the NHS Trust, and my Cardiologist).

Kind Regards,
-Carl.

February 21st 2012. Head Injury

I was working on my kitchen extension - not really doing anything important, just sweeping up.  I had no protection on because I wasn't doing much... but of course, that's when it gets you!

A concrete block fell from a height of 7 feet high, bounced off the wall, and the corner hit me on the head, a glancing blow.  I was squatting, and it threw me off my feet back onto my behind.  I immediately held my hand to my head, and it was covered in blood.

My girlfriend rushed me to A&E, and she was talking to me the whole time to check I remained conscious and not concussed.  I was still losing blood, it was running down my face, but it was clotting up and matting my hair.

I waited for the doctors to see me - not long at all - because of the Warfarin i was high on the list and went past many others.  It had stopped bleeding by the time they saw me, so they super-glued it back together - i had a half inch gash on top right of my head.

Here are my INR results... I think I was lucky it was low!  Not sure that a 3.5 would have been so kind to me.

Anyway, I recovered fully, obviously, with no futher negative effects.  However, I was carefully monitoring myself for the week after.

Not written for a while

I realised I haven't posted on here for quite a while - thanks to Jeff for reminding me.  I think I generally feel that i've posted everything there is to say, and the topic doesn't change much.  From here I expect to only learn small new things, not much changes day-to-day.  However, I'll make a couple of postings now with reference to my Diary... there are always a few mini-surprises in there!