Sticky Blood-Hughes Syndrome Support
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Translating concerns into action

For some time I've been concerned about the rather casual response I get following a low (out of therapeutic range) INR result. A minor tweak of warfarin dose and retest in 3 weeks is a fairly typical response. Although I do follow the dose guidance (since I really don't want to get out of whack with my GPs medical records), I ignore the retest instruction and retest after 7-10 days.

Last weekend I developed swelling and stabbing pains in the leg that likes to develop DVTs - very large DVTs. My previous INR test was just below range, and I'd had the minor tweak and retest in 3 weeks response as usual. Fortunately the swelling reduced and pains stopped but it was the kick up the pants I needed to deal with it.

A retest yesterday showed that my INR had dropped another 0.6. So it was back to the doc to sort out what's going to happen now and in future when my INR is low.

Fortunately my GP (who is my primary medic, backed up by haematologist and general medical consultant at my local hospital) didn't even need persuading. He acknowledged that, given my history, low INRs need to be taken more seriously and has agreed to provide a 7 day Clexane prescription automatically any time my INR drops below therapeutic range, and that my INR needs to be brought quickly back into range.

Even more surprising was that he was willing to do this regardless despite saying he thought it unlikely I had developed another DVT this time - he acknowledged that given my history it was worth doing this even if just to address quite natural paranoia on my part.

And frankly I don't care if he thinks I'm neurotic, I got the result I wanted.

Which reminds me once again, as if I haven't had ample evidence already, that I have to take responsibility for my condition and ensure I get the treatment I need - especially since I'm fortunate enough to have understanding and supportive (if all too human!) medics treating me.

7 Replies

Hi hon,

Good on you, my Inr clinic retest weekly if Inr too low or too high, although they panic more when it's high! Go with your instincts, you know your body, i'm so glad your doctor being so helpful and has given you clexane as cover.

As you say we all have to be our own advocates and as knowledgeable as we can be!

Hope you're doing ok today!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Ps having had clots, it's not really paranoia not to want another one hon! Xxxx :-) :-) :-)


Good for you, and yes it is sad but we do have to take responsibility for our own health, as wrong as that fact is. And it will be increasingly more important that we do so too.


If they had 'likes' on this forum, I feel sure you would receive a high level of agreement with that point.

I hate the fact that GPs are in charge. I know I am an expensive patient and now try to stop myself attending to keep the costs as low as possible.

Its difficult to guage if a GP is really on your side or is looking at the budget.


It would appear that we have to be down right pushy most some of the time, it goes with the territory, glad to hear about your new written up and useful prescription! Mary F x


Having had a DVT, or a PE or a mini stroke confers the " right" to be paranoid, after all, don't they say that sometimes paranoid people are correct and in truth someone's IS out to get them?


I self test every other day having been advised to do so by Prof H. My target is 3.8 to 4.0, again set by prof-who I see again in a few weeks. I have had multiple TIAs when it has been 3.3. I have Fragmin for when it drops below 3.0 My surgery uses a program INRStar for all warfarin patients, which determines doses et, but I completely ignore it (which they know) and decide my own dose regime. INRStar is only any good if it is set up correctly and is fed the right data. Though I know what I have taken, I don't feed the data into the program it would take too long and I will always determine my own dose. If your surgeries are using the same INRStar, and you let them determine your dose, then it is worth checking they have set it up properly for you..

Yes, I agree we have the right to be paranoid. Fortunately my GPs trust me, well I have been on warfarin for around 40 years and haven't made as many cock ups as some earlier GPs.

YI am fortunate to have a GP who says that I do indeed know best about my multiple conditions, and that I have a record of my concerns being well grounded so when I say something's up, she takes it seriously. Her attitude ought to be the norm though sadly I know it is not.


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