I give up!

Have messaged before but briefly I have been diagnosed with AF and SVT and recently had mention of junctional rhythm yet am struggling to get anti coags. I've seem umpteen different cardiologists, one said yes to go on anti coags, explained pros and cons of each but then wrote to my doc discharging me! I managed to get referred to the 'top' cardiologist (one of the nurses made comment how lucky I was to be seeing him) but he still won't just prescribe them, instead he wanted me to have a blood test to test if my blood clots more than it should? Basically I've had three lots of blood taken on separate occasions (due to cock ups) and NOW the lab say they won't test for it as I 'don't meet the criteria' Apparently A-Fib doesn't count and the fact I didn't have a 'spontaneous' Pulmonary Embolism i.e. I was on contraceptive pill at time which increased the risk and that my grandfather had a thrombosis don't count either! I have given up, I'm tired of fighting...

27 Replies

  • No help at all, but have to say it's the one area where I find things most confusing including on this forum. On here, you will read advice saying that if you have AF, then the main thing is that you must be on anti-coags to bring your risk of stroke somewhere back to normal. And then you see other posts saying that if you do not meet the CHADS score criteria, then you do not need anti-coags.

    I have a CHADS score of zero, and have very symptomatic arrhythmia, and I've been on warfarin for 2 years. I can't imagine my EP taking me off them.


  • Hi Beanz1970 I have AF/SVT and I wasn't offered any anti coag drugs, but I wasn't too worried as I knew I could find herbs to counteract this just in case. It might be a good idea for you to look into this for yourself, while you are trying to convince the Medics what you should have. Others on this forum will be able to help you regarding the specific criteria I am sure, but certainly don't give up or get fed up if this is what you think you need.

  • Demand anticoagulants Beanz. A polite but strongly worded letter to your GP will get things moving. Emphasise that the worry of not being properly protected from stroke is significantly contributing to your malaise and ill health.

    Respect to ultramarine but 'camomile and cowslips' might be worth a punt for a winter cold. Surely not for anything as important as life-saving anti-coagulation!

  • Hi Leelec I have spent a long time in looking into Herbal medicines just over 6 months to be exact. If you look up different herbs you cook with it might surprise you. eg. Tumeric Garlic Ginger Oragano. My latest food additive

    has been given to me by a dietician, which is Peppermint tea, this is amazing for stomach problems, (for me now that I have IBS diagnosed) this is green not yellow and you will note that camomile is not on this list. The main reason for replying was to give some support whilst waiting. I never ever would recommend anything unless specifically asked. You will note that I did not list anything.

  • Sorry ultramarine, I don't mean to offend but I had a bad experience with a 'herbalist' who gave false hope to a close relative some years ago.

    Herbalism, practised by persons with no medical qualifications, is unlikely to cause any harm in circumstances where the condition is comparatively benign. Of course, why not give peppermint tea a try for an upset stomach? I have no issue with that but you seemed to be suggesting a herbal alternative to warfarin. That struck me as extremely dangerous. Sorry.

  • I am sorry that you have had some bad experiences, for me the alternative was to try to protect myself as no medications like warfarin was given to me nor to everyone I found out later when I was newly diagnosed. I knew nothing, so I had to do a lot of fishing on my own before the next visit to my cardiologist. I was not suggesting an alternative I was suggesting that it would do no harm to check up other avenues whilst waiting until the rest of you on this forum could give other advice. I do not take warfarin, so I can't comment on this. You might like to check these items for yourself leelac as these are normal cooking herbs I was never under a herbalist. I should also add that if no other medics considered these properties as having no effect on thinning the blood, then why did the nurse tell me to stop taking these spices and herbs before getting an aneasthetic. Apart from this my part was in trying to help someone who was at a low place at that moment, (See the Title) which everyone suffers from. The The dietician I am currently under will be spending more time with me in the future, but all I can say is that this is helping me already both physically and psychologically I feel great at the moment, and I would hope that anyone can and should weigh up all considerations especially when no other heart problems are evident. I hope this clarifies any misunderstanding.

  • Any nursing precaution, however motivated, should not be mistaken as professional endorsement of self-medication with herbs, or any clinical effect of these herbs. From many decades of modern medical history, there are no clinical trials that have shown a clinically-relevant stroke-protective effect from herbal remedies in AF patients. Even aspirin, with well-documented anti-platelet activity, has no statistically significant effect on stroke risk in AF. Moreover, if taking herbs provides any sense of security whilst fighting for an effective treatment, then they are diminishing the urgency of this need and, hence, are probably contributing negatively to the situation. Speak to the guys at the AF Association, they'll help you speak to your doctor, or to find a, more clinically sound, second opinion.

  • Thankyou for your concern, but I wasn't after an opinion, I was stating my reasons for trying to support someone in my own words. As far as I am concerned my own condition has been and is being dealt with (also in my own way). I am quite capable of getting treatment and/or getting a second opinion irrespective of what my views are. As for a clinically sound opinion, it has taken me two years to get a diagnosis of IBS along with AF/SVT. I gather you don't cook with herbs, as these can be bought in any supermarket and are not based on clinical trials. I am now under a dietician due to this.

    A nursing precaution is just that "A precaution"

    ie: not taking any chances or risks. I took this view myself, by implementing straight away what was at hand in my kitchen, not waiting for a stroke to happen because I was left in the dark. Nor waiting for a beaurocratic outcome when I have never been sick before. In

    Australia our criteria might be a little different in giving out warfarin I dont know. You will also be aware that the person who needed some support got it, with or without me. In my view a balanced opinion is just as important as one view, otherwise we would all be jumping over the same fence.The question now is why did you reply to me? If it was to tick me off then I think this has been done adequately already.

    This is a national forum, where not all criteria is based on the UK model.

  • "Apart from this my part was in trying to help someone who was at a low place at that moment, (See the Title) which everyone suffers from. "

    Thank you :o)

  • I agree with leelec, you have to fight the system for what you want. Don't wait until you have a TIA like I did before being put on anticoagulants. I have had PAF since December 2002 and until I discovered this site, I did not know anything about it. You can get a lot of help being on this forum with information gleaned from other very knowledgable and like minded people. You need to see an EP (ElectroPhysiologist) , in Cardiology. They can help. Good luck and keep on chipping away to get what you need. Di

  • I'm guessing that if you're on the Pill you're quite young, and that this means your CHADS2Vasc score is zero - this means the risk of you having a stroke is low so the first thing is not to panic... But risks are all based on averages, we all know people who have had strokes and are younger than 65. But then again, anticoags carry a small risk of bleeding, which may outweigh the risk of stroke in your doc's eyes (I think people here would argue otherwise). However, my cousin had two TIAs at my age (56) so I argued strongly that I needed to go on warfarin. I agree, make a case in a letter if you feel up to it, and present it to your doctor. If you are worried to that extent it will affect your health.

  • Worth noting that just being female ensures a minimum CHADSVASc of 1. So if someone is on the pill you can be certain that the presence of any other risk factor with AF would lead to the need for anticoagulation to reduce the risk of stroke (once the bleeding risk had been assessed). To suggest that someone has a zero CHADSVASc with no knowledge of medical history is quite a bold move. And as was pointed out subsequently, a prior thromboembolism alone comes with a score of 2 (same as for stroke and TIA) bringing the minimum, in this case, to 3. Please take a look at the AF Association's stroke risk calculator at afstrokerisk.org. Not only does it help anyone to calculate their CHADSVASc, it explains each step and provides a comprehensive report on what the guidelines recommend for each result.

  • Apologies Westbrook, I shouldn't have suggested that Beanz had a score of zero without knowing her history, I was just trying to be reassuring and I probably shouldn't have. I will stop posting.

  • Hey, not a problem. Definitely don't stop posting. We're all learning all the time. And a lot of people here gain a tremendous amount of support from all the help and information that the contributors provide. Just keen that people are pointed in the right direction, particularly when it comes to medical information on AF. The materials from the AF Association are great. Recommend everyone visits preventaf-strokecrisis.org to browse through the AF Report that they published. A pdf version is also available for download here: preventaf-strokecrisis.org/... Definitely don't stop posting!

  • Hey please don't stop posting, all replies here have been helpful to me, just getting responses from people has lifted me enormously so thank you :o)

  • I'm not on the pill now, had to come off it immediately I had the PE. My chads2vasc is 3, when asked if I've ever had a blood clot in a vessel I answered yes as I would have had a thrombosis to have the PE, do people think that's right? I'm 43 with dependent children (single mum) so you can understand my concern? I've been fighting to get this for probably 18 months now. I've been put on clopidogrel and aspirin (but can't tolerate either) previously so they do believe there is a risk!

  • Hi Beanz1970

    With a chads2vasc score of 3, you should definitely be on an anticoagulant. Please email the patient services team: patientservices@afa.org.uk and we will do our best to help to try and resolve this matter for you.

    Kind regards


    Patient Services Associate

  • Thank you, have emailed :D

  • I am sure afa team will get this sorted for you so good luck and let us know how you get on

  • Thanks everyone for your input, I don't know what I'd do without this forum!

  • Not having the medical knowledge, I can only approach this from a logical angle. It seems to me that any condition of the heart that can cause 'pooling' of the blood, creates a risk of clotting and possibly stroke conditions. Age is surely irrelevant. Blood needs to keep moving and if it stops, there will be a problem. I am never very happy with box ticking when in a diagnostic of prognostic situation as there will be some grey areas. I was always informed, from the start of my AF that I would be on Warfarin indefinitely.

  • That's what I think Dadog. To me it seems the Chads scoring system is irrelevant if you have an arrhythmia for the reasons you just stated, unless I suppose if it's only very slight?


  • I agree with both of you, if you just look at "stroke" risk without the AF it seems that there are many factors not taken into account in the CHADSVACVS, Weight, diabetes etc etc

    The only thing I can think of, and as usual I declare no medical knowledge, is that our risk is ischaemic stroke usually, so a blockage caused by a clot either to give a TIA or a full stroke, whereas most younger people seem to have haemorrhagic strokes caused by bleeding in the brain.

    I presume that warfarin increase our risk of haemorrhagic, but that still doesn't really explain why the CHADS score appears to not take into account so many factors.


  • That's certainly logical. However, age does play a big part. Clotting disorders arise from the interplay of three things (called Virchow's triad). These are hypercoagulability, blood stasis and endothelial injury. The AF contributes principally to the problem of blood stasis. As we age, various factors then influence the health of the endothelium (the inner surface of the heart in this case) and the innate propensity of the blood to clot. So, the pooling of the blood on its own doesn't necessarily put you at stroke risk. This is why CHADSVASc has been found to be so effective at predicting stroke risk; the various risk factors in CHADSVASc all influence one or more of Virchow's triad, each contributing to the stroke risk in its own way. It's much more scientific than box ticking, although GPs frequently don't have a full grasp of tools like CHADSVASc, and it can often feel as though you're just being put through the motions. Finally, there are now alternatives to warfarin (for the first time on over 50 years!), and they have been approved for use by NICE which makes it illegal for a GP in England to deny them to a patient if they are clinically relevant. Warfarin is great for many patients but options are always a good thing - even when each one comes with a different rage of advantages and disadvantages. Well worth exploring what the best anticoagulant is for you.

  • I have PAF and no anti coags as was told i do not need them as i have no underlying heart condition, and the fact both my parents died of heart disease my dad was 51 and my mum 63 two of my brothers and my sister all under 50 have had a heart attack and my sister a stroke but im not to worry as only have PAF!!

  • I feel your concern, kazzyr. When I was admitted to hospital with, AF on 5 occasions, I was always asked by the doctors "Is there a history of heart problems with any of your family?" Maybe AF in all its forms isn't considered a problem? One wonders why they ask.

  • Good news! I wrote a strongly worded email to my cardiologist a few days ago pointing a few things out. He's just rung and agreed to put me on anticoagulants!! The relief is immense, thank you to everyone who helped me to stay sane and to persevere :o)

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