Sticky Blood-Hughes Syndrome Support


Hi all. I finally went to St Thomas's yesterday and saw Prof. Hunt. She was really nice and thorough. I have had to have lots of blood tests ( 9 vials in all) though don't know what they are all for. She is also sending me for a brain scan which I have next month and then I have to go back and see her in a month. It's nice to finally talk to someone who knows what I'm talking about and understands. She was a bit confused about my INR results which as I said before have been going up and down like crazy, because as she pointed out and I quote " they don't adjust your dose to try and reach your target INR". She says once she has all the results she will sort out my Warfarin. So hopefully light at the end of the tunnel.

4 Replies

I am really pleased for you regarding your news, let us know how it pans out, it is always a relief to get into a good clinic! MaryF


Hi, Good that you have found a good APS-doctor in Prof. Hunt!

About taking warfarin; If it is possible try to get a CoaguChek-machine. Try to remember to eat the SAME amount of vegetables EVERY DAY rich in vitamin K. Do not adjust your tablet-dose and also your vegetables intake at the same time. That makes it "double". I never change my tablet-intake but if my INR is too high I eat more of brusselsprouts (rich in vit K,), that lower my INR in 12-18 hours. As I selftest I can take care of my own food and tabletintake.

Best wishes from Kerstin in Stockholm


Hi Thanks for your responses. Lure2 with regards to the coaguchek machine, I did look into it but it's too expensive to buy and can't get one on prescription over here. I do try to eat the same veg every day but not always possible. My diet is as it's always been but only in last few months my INR has been erratic so not sure what's going on but hopefully will get it sorted.


Hope your coagulationclinic will let you have bloodtest for INR more often, at least every week.

The INR can change when you are infected, when you do not exercise so much and when you change your drugs or perhaps also when you are stressed. Also other circumstances perhaps. May be individual. We are after all different.

Good luck from



You may also like...