Where can I get info to share with my... - Hughes Syndrome A...
Where can I get info to share with my doctor about keeping my INR HIGHER. She wants it at 2.5, and I feel better at 3.5. Any links/articles?
Thank you for pointing me in the right direction.
When is the new website set to be released?
Not until I've finished writing the copy! It's been a real labour of love because so much new material needs doing but I am aiming for launch this autumn - October/November hopefully.
There was a paper that included Dr Khamasta amongst its authors that I used a good few years back. I'll see if I can find it but it may take a while. In the meantime you may wish to google him and look through is papers online. It is very similar to the link above which may be the summary
This issue was topical a few years back but I had thought there was some better understanding out there but- having recently discharged myself from hospital after a week that saw amazing contrast between brilliant matrons and then doctors who didn't want to understand, I am only thankful that my target INR of 3.8 to 4.0 is now just met with raised eyebrows after I point out that it was set by Prof Hughes personally.
At one point, when debating my coagulation changeover from warfarin to heparin, something that was supposed to have been agreed on the basis of the St Thom's protocol I had obtained for them, they suggested having a chat with Hematology. I said it had better not be Dr X because his refusal about ten years ago, to raise me above 3.0 was, in part and in my view, responsible for three TIAs in a day (at 3.3INR).
We are all different and some may not need to be above 3.0 but it is pretty appalling if there are still doctors who will not listen to the evidence and perhaps seek advice. I regret that I now find myself in the mood to say, well if you don't look it up or take advice, and something happens, then you will have to answer for it. Unfortunately there are some articles out there that are just plain wrong about Hughes. When I added a comment to a supposedly learned blog, it was just removed without ever the courtesy of an email challenging my comments. It simpler for some to think that Hughes is only about giving a small amount of warfarin or aspirin.
As a great NHS supporter I am getting really concerned about many aspects of the service these days.
