I had my St Thomas appointment last thursday where I was hoping I was gonna get some answers to my questions, how wrong was I. I went very prepared had written down all my symptoms and questions, firstly I was seen 1 hour and 50 mins after my appointment time,not a great start when I was already on a very right schedule then to discover it was not the Doctor I was expecting to see. other than getting new blood tests done for symptoms discussed I feel like It was a complete waste of my time going. My questions are still unanswered
*is Hughes syndrome something you are born with or is it something that gets triggered???
*is it hereditary, am worried about my kids???
*why is my inr so unstable and erratic??? have only been in range 9 times in the last year (this is my biggest worry).
I'm sure there are loads more questions whizzing round my head but these are my main ones, that bother me on a daily basis.
I have spoken to my local warfarin clinic to see if they can put me in touch with another Hughes patient apparently they have quite a few, I think it might help me to have someone I can chat to who actually understands daily life, while it's nice to have family and friends who sympathise, no one actually gets it, my Mum is my biggest supporter we are very close and I talk to her load about things that bother me, unfortunately for her she physically gets quite alot of my aches and pains and often calls to make sure I'm ok and to check if something is hurting and will tell me exactly the position of the pain she is experiencing, it's good for me as it confirms it's not just in my head and is real, but is horrible for her. why this happens I have no idea, when I was pregnant she was even able to tell me my next contraction was on it's way.The thing I find the hardest is when people presume you are well because you look ok on the outside.
if anyone can help with answers I would be most grateful as I feel like I'm going round in circles and chasing my tail.
Zoe
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zoe13
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I'm sorry that you had such a negative experience on Thursday. It sounds like you did all the right things, writing everything down etc.
Is there anyway you could afford to go to see Prof Hughes at the London Lupus Centre, London Bridge Hospital?
I don't know if we are born with it and I did wonder if hving Glandular Fever, when I was 26, triggered it but Prof Hughes thinks I had symptoms in my teens: abdominal migraines and dry eyes etc.
I hope you do find a local patitent or two to team up with; we in the Bristol/Bath area have started having get togethers.
thank you for your response, this is the 2nd time I have left the appointment feeling like this, have been Thinking about going private, think I need to look into it a but more and find out cost etc, looking back at teenage years I too suffered terrible migraines and was on the pill from early teens and often wonder if this is linked too. How nice you have people to meet up with and chat too.
If you are thinking of going to London Bridge, do get hold of all your latest blood tests done by GP, or local hospital or St Thomas' - a good starting point at London Bridge to arrive with those. Sorry you have had an awful time, this seems to be a little to common for my liking! Mary F x
When I see posts like yours I think maybe those of us who were chucked out of the St Thomas outpatients, we didn't lose as much as we thought we had. St Thom's used to be the place we felt safe. A wait was the norm in my experience.
I think the bottom line about whether Hughes is hereditary, or triggered by something, is that it something we will just have to wait for to know for sure. Neither of my parents had it, and one of my two sons has been checked and found negative. I have learned not to worry about what I cannot influence, just to deal with whatever occurs if it occurs. It saves a lot of worry but took a very long time to learn. We can only use our own experience to make sure close family are prepared and know the warning signs.
You don't say how far wide, or whether it is above your INR target or below that you keep finding yourself. It isn't uncommon for us to be a bit wide of our targets now and again and depending what your target range is, it may not be the problem that you think it is. Personally I don't worry too much about being a couple of full points over my top limit of 4.0.
I saw Prof Hughes a little while ago as a self-funded patient, the cost was around £200.
I hope you soon get to feel more comfortable about this wretched disease of ours, remember you are amongst friends here.
I need to try and learn how to do that could be a very useful skill to have when you have something like this I seem to worry far to much about the things I have no control over, with regard to the private cost I think I might have to organise some kind of fundraiser to support that option. As for inr range is 3.0-4.0 in February I was very poorly and reading was greater than 10 due to medications being taken, was admitted to hospital for a few days n given vitamin k a couple of times, then was visiting the hospital every couple of days for blood checks (actually feels like I am permanently at the hospital) this is still ongoing every few days it's driving me mad,I have also been having to use fragmin here and there too, it quite often drops to the 2's and very occasionally hits the mid 3's, but only a couple of weeks ago tested on a Friday was up again to 7.7 then on the Monday had dropped down to 1.5 I am taking warfarin at the same time everyday at the prescribed dose.Just wondered i this is quite common??? as in 2011/2012 I seemed to be mostly in range.
Zoe
I was told that green vegetables in the diet will mess with the INR.
Because they contain vit K and warfarin thins the blood by breaking the vitamin K recycling process in two places.
If the amount and type of vegetables vary then so will the INR.
What makes it more difficult is that it takes 5 days or so after eating the veg for it to have an effect. Also broccoli and kale have many times more vit K than some other green vegetables.
You have to eat the exact same diet each week for a stable INR.
Hi, there is a great deal of misinformation and many old wives tales about green vegetables. The truth is that we need Vitamin K in our blood as it helps maintain strong bones and iron levels. I have heard of INR clinics telling people to "Stay away from green vegetable", others saying "reduce levels of green vegetables. The reality is that we need them and should therefore try our hardest to eat them in a consistent level every day. I eat as close to 85 mcg of Vitamin K in my daily diet and my INR has been fairly stable over the past 10 years. Yes; I do get small glitches where I get a higher than usual reading some days but nothing worth changing my Warfarin or dietary intake.
If you need to find out what foods contain Vitamin K (it is not just green vegetables) take a look at the information on this page: ebulfin.myby.co.uk/medical/...
There is a complete bibliography on where the information came from, at the foot of the page so that you will be able to verify the information if you need to by following the references by finding the originals online.
I hope this may help others who have been given poor or misguided information about Vitamin K.
I will look into the things you have mentioned, with regard to the green vegetables, the consultant mentioned these on Thursday, and said you have to have the same amount of the same one everyday or not bother altogether. In the meantime I will keep plodding on as we all do, have a good day all
Zoe, as you can see from your consultants information (he/she said you have to have the same amount of the same one everyday or not bother altogether) even qualified and professional medical advisers have absolutely no idea about the use of Warfarin and Vitamin K intake.
Warfarin is a Vitamin K antagonist and as we need Vitamin K to help promote healthy bones we should maintain enough each day and increase our Warfrin dose to exactly the right level to remain safe from clotting yet still maintaining a healthy diet.
I have to say that I know perfectly well how you feel, mainly your frustration. I have APS , I live in London, but every time I have an appointment in St. Thomas, sorry if I offend somebody, but I hate it. Normally they give me the appointment with Prof, B. Hunt, who I never see, it's always someone from her team, or basically that's what they said. They never ask my questions, their answers are that B. Hunt is who has and know all the answers, so I question, why if I have the appoint with that person I nerve see that person?, it's ridiculous!
I also have to wait long hours, if the appointment is at 3 normally I'm not been called until 4.30, at the end to waist my time. So I when I leave the clinic, I feel really angry and frustrated.
To answer one of your questions, I don't know if APS is inherited, something that as experts they should know, but just to say that nobody in my family have it. In the clinic they always ask me if I have had a blood transfusion in the past, but I've never had a blood transfusion
and what is the relation of this and APS? I don't understand.
To finish, just one more thing, I don't feel 100% secure in St. Thom's, in fact I feel like a guinea pig when I go there.
I wish you all the best Zoe and if you decide to go and see Prf Hughes let me know how it goes.
thank you Maria, sorry to hear that you are feeling the same
Hi,
I have read here and also noticed myself that when you eat more broccoli to reduce your INR level it takes only 24 hours or so to be in range.
Have you tested and it took 5 Days? Of course it can be individual but we know that it takes up to 3 days for the warfarin to function.
If you change medicin, how much you exercise, a virus etc.
I selftest. I have Lupus Anticoagulant. I Always make a note what special vegetables and what amount I eat.because my memory is not exactly good nowadays.
Another factor which influences INR is the stability of your gut. On those days when one's food is rushing through then not as much K is absorbed and the iNR wil go up. And tummy distress also effects the population of your gut's helpful bacteria-- which can also effect how much, or little K, or those thinning nutrients like Vit A, are absorbed. It's complicated!
This complication touches base with me on those few occasions I have been put on oral antibiodics. Then, all bets are off! The INR may go up? It may go down? The only thing I can count on for the weeks during and after antibiodics is that the INR will be erratic and will need a lot of attention.
But I suppose the point of my post is this; INRs will be thrown off by anything that speeds up, or slows down your gut. If you are still having trouble with INR stability and you don't want to switch to heprin or fragmin, and if your gut 's behavior is not stable, you might consider experimenting with dietary sensitivities. The usual culprits in dietary sensitivity issues are: gluten, ( wheat and barley,) , casein and lactose,( dairy products,) soy, and, of course, nuts and peanuts.
A quick google search on dietary sensitivities can lead you to much better info on this subject then I can offer.
Hi london lass is there a London support group still ? I'm in London As well and also under St Thomas for APS, Lupus SLE ,Hahimotos and fibromyalgia....lots of other pobs.hadan appointment last Thursday morn...just keep putting all my symptoms under the fibo heading ..l know not all are.itwoud be good to be able to talk !
Well you do indeed have quite a range either side of your target- but a few others I've seen here over the years have also been up in double figures. Getting the checks done as frequently as you seem to need at present must be a real pain in the butt. In time it might be appropriate to self-test if you stay on warfarin- though the machines don't come cheap, around £350 I think ;-( My surgery pays for the strips. Do they use a machine at your surgery/hospital or draw blood? A few people who are Lupus Anticoagulant positive can't get on with the machines which use blood from pin pricks, but if you can make contact with a support group maybe if one of them self-tests you can perhaps find out ( I'm a long way from you so cannot help out there I'm afraid). I do hope things settle for you soon and that the issues become manageable for you.
thank you tim I have been back to get checked again today and spoken to the nurse who has suggested looking into self testing, I just need to get my gp on side
hi Zoe. I self test if you want to meet and chat. Is Wimbledon any good for you? Or could do Clapham Junction. I don't know how to send you my details.
Hello, I'm sorry I can't help with any of your questions, but I can't believe that no one has commented on the fact that your mum experiences your pain in some kind of physic conection! That is unreal!! It must be quite scary for your mum to know the pain your in and not be able to help you. But equally it must make you feel bad that she has to experience it, even if it does mean you know that someone truly understands exactly what you are going through! But I just thought I had to comment on this totally unique connection that you two have!
she also had it with my sister when she was pregnant it's very strange, don't know why other than the fact we are really close
Re 5 days. Sorry reading it back I did not make it clear. My research indicates that the vitamin K is absorbed at varying rates from minutes to hours or longer. It is the effect of changing the Warfarin to stabilise the vitamin K level that can take days before it has an effect because warfarin works on the vitamin K recycling process.
It all depends on how much vitamin K is obtained from the diet. The way I see it erratic diet = erratic INR.
I was reading about a haemophiliac who cut their foot and ate a bowl of green salad to stop the bleeding in minutes.
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Self testing problems with GP and Warfarin nurse
Frustrated
Shock at the doctors today
Still having trouble getting Gp to prescribe the Plaquenil!!!!! Aaaaargh!!!!
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