Sticky Blood-Hughes Syndrome Support


well for the last 4 days been in hospital for a fasting glucose and it has effected my INR so bad 8.9, I have felt lousy, worried about bleeding and now have to stop until Sunday my warfarin and had to have 3mg vitamin K. There seems to be a lack of communication between all of my consultants I was told because I had not eaten for 4 days, this interfered with the warfarin.

I am really fed up and cannot wait to seek advice at St Thomas which i am attendng as being referred.

Has anyone else experienced this?

9 Replies

So Sorry Daisy! I thought mine was bad enough at almost 5! I do hope you feel better soon.

I know how you feel about wanting better support. I had to stop mine for two days too. My hospital's anticoagulants 'helpline" has been engaged solid or not answering all week, so quite how you are supposed to get any help I don't know. You feel so alone don't you?

I wish St Thomas's had a helpline we could ring - perhaps they do?????


Thanks for replying so soon, I only wish there was a helpline too. I have just emailed my consultant because I want to make sure that it is okay. Apparently because he did not request the fasting test, he cannot be involved - new thing according to GP who I went to see tonight. I have been looking at web but find it too distressing!!!

Did you have vit K


Hi daisy

sorry to hear you feelin bad after fasting. I had to fast for the night ( cholesterol etc blood tests) still feeling lousy. Advice is poor when causes trouble like this and can't get in touch with anyone.

Hope tommies get things sorted, sure they Will hon.

Any trouble go to a n e. Din't suffer you shouldn't!!!!!

Sorry if not making sense not good brain tonight.

Take care gentle hugs sheena xxxxx jessielou xxxx :-) :-) :-)


Hi Daisy

No I didn't have a Vit k. But then it was such an awful muddle up on the day that nothing was done. I could not get INR tested at hospital as the clinic was going mad with so many patients and we had to leave for another appointment. I tied calling GP, helpline, hospital, you name it even London Bridge but got no answers from anyone. I was really really upset and felt very alone as had no INR test for over a week.

Then GP called and by this time it was 4.30 so she said to come in and she would draw venus sample but it meant my hubby having to drive all the way back to the Hospital lab with it to get it tested. GP called two hours later at 6.30 with result saying it was too high. She had got hold of the Consultant at the Hospital to ask what to do (who had apologised for the chaos in the morning) but made no mention of Vit K and of course my GP and I would not have thought to ask as we are feeling our way along with this too.

Gp has said that as these clinics are stressing me out (and my hubby who has to take me which means time out of his day) they will do the INR with a venus test once a week to save me having to go to there which for the time being is ok.

I see London Bridge this week and this whole warfarin /Heparin debate is first on the list for discussion! I feel so anxious all the time not being able to tell what my INR is doing, my hubby gets annoyed because he's worried and every little pain, headache, increase in symptom just makes the whole thing worse. I suppose I am a control freak and for once i can't control anything and I HATE IT!!!!!

I do hope you are feeling better today and your situation is improving.


thank you for replying - I contacted my consultant who has just come back and said that they the ward I was on Planned investigation unit should have contacted him or the Haem ward who know me and I explained that I had given all this to the registrar etc and that the nurse who was looking after me was so concerned that she rang the ward and spoke to registrar on call and said that they were not aware of me!!!

The consultant asked me to go to Haem ward tomorrow and have INR check so just rang and made my appt. I could have gone today but only got back and drove right past the hospital. And as my husband is always ferrying me about he needs the rest - like you he also works and has to do his work which is 15 miles away and then has to pick me up and take me here and there and then go back to work. He is so fed up and I dread asking him.

I went to GP lst night which had been arranged for awhile and luckily got out of hospital in time and explained how the saga of the haematology and other departments that I see are not gelling together, so once again she is contacting Haem and explaining my anxieties. Unfortunately due to my mum not being aware of Warfarin side effects she passed away and this always with me constantly and as said to consultant I want to make sure that the hospital are working together.

The Vit K reduces the risk of bleeding but then I have the risk of clots as the consultant said - oh how I detest this drug. I thought I was doing well two weeks ago no headaches, dizziness etc and then this blooming test has caused this unexpected rise in inr.

The London Bridge - is this the private hospital?

It is good to know that people like ourselves are experiencing similiar problems of APS


Hi Daisy

Sorry to hear you're having such a worrying time. I've had very similar and frighteneing experiences and long delays getting things sorted.

Firstly, if you need to fast for a blood test or if you're unwell (eg. tummy bug) and can't eat, your INR is likely to shoot up, so be prepared - tell someone straight away and get tested and take evasive action, such as lower your Warfarin dose but only in conjunction with advice from your INR nurse or consultant or GP, to make sure that this is the right action for you to take. Just reducing your Warfarin as soon as you can't eat would prevent the INR shooting up, yet you would minimise the risk of clotting, which is likely if you get to the point where you have to stop Warfarin and/or have Vit K.

Secondly, if ever you are admitted or see any doctors/nurses or have any changes to treatments or routines, tell people that you're on Warfarin and that you've previously had bad experiences (and sadly others have too) and suggest they contact your haem doctor/nurse ASAP to discuss. Even in an emergency, there should be some haem expertise for them to call on.

Thirdly, what has made a fantastic difference to me is having a little machine at home to test my INR myself. It not only saves a lot of time and travelling to appointments and phonecalls etc, but helps me to keep a regular check of my INR. I don't need to check that often when I'm unstable, but when I'm unwell with APS symptoms or, like recently with a chest infection, I could keep a close eye on it, notice changes straight away and give myself the correct dose, keeping my INR more-or-less within the range I should be in. These machines are not the answer for everyone to have at home. Some people just need to go to their local surgery to have it done this way, rather than having a venous blood test every time (costly and time-consuming). I suggest you have a chat with your Haem doctor/nurse about a machine. It may well help you. It's certainly transformed my life - hardly any symptoms as I keep my INR in range, far fewer hospital trips, no admissions, and it gives me freedom to go on holiday, knowing I can keep and eye on it and manage it as necessary. I still value my specialists, but thy hardly need to see me now!

Well, I hope some of this is helpful to you and that you will soon feel better and be able to have you INR and symptoms managed better.

Best wishes



Hello Kerry, well I was not aware that fasting would interfere with Warfarin, but I had 72 hour fast and it was the most unpleasant. I have just taken 3mg Warfarin as advice by consultant and tomorrow Haem Ward. Now the haem team are calling me and when spoke to nurse she said how high my INR was. I have been so tired, but what with an uncomfortable stay in hospital etc, it has made me extra tired. It is like talking to a brick wall when explaining for them to contact Haem ward.

Hopefully things will have settled by this time next week

thanks for replying.


Hi Kerry

You are so lucky to be able to do that. I have asked if I can and the answer is NO! No because they have no resources to set up self monitoring and No because without the support of my clinic Roche won't sell me a machine. So I am stuffed.

personally I am fed up with doctors who are stuck in their own little worlds, who are blinkered to everything unless its to do with "their" subject. They are incapable of doing joined up thinking and yet think they are gods gift. Try questioning their logic and they don't want to know and if you dare to cross them....well heavens the earth would stop turning.

When are they going to understand that lives are at stake and that patients are suffering with miserable lives?

Sorry but now Ive had a rant! I really am sick to death of people who have signed an oath but really think it only counts from 10 till 4, tuesday till thursday and not when they are on the golf course.

Pretty safe no one will read this today then!!


Hi Kerry,

Just a quick question in relation to your success in home testing. Did you receive the advice/machine via your local GP, or was it via the Hematology Doctors at the Hospital (I live not far from you, so probably the same Hospital!)


You may also like...