Blood thinners: When is was trying to write... - AF Association

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Blood thinners

Paul0208
Paul0208

When is was trying to write my post yesterday I included the phrase Blood Thinners. Thanks to a member called Bob I removed my post as his response was way too abrupt and I need my confidence building, not knocking. I know blood thinners don't thin the blood (it's just a commonly used phrase), just prevent it clotting so easily as normal so I don't need a lesson in capital letters thank you. Try and be kind as maybe a lot of us on here have got bigger stories to tell over time that hopefully can be beneficial to others in some small way

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BobD
BobDVolunteer

My appologies if you were offended by my comment Paul but it is important to undestand these things in order to appreciate how things work, Many of us here have been campaigning for years to get this misnomer stopped as it can cause people to worry that they will spontaniously bleed which of course they will not.

Again I'm sorry if my post appeared abrupt but time is of the essence. I have to read and assess every post to make sure it is being answered and the days when I would write war and peace replies are sadly over so busy is the forum these days.

Please don't be put off!

Paul0208
Paul0208 in reply to BobD

Thank you, Bob

Treschere
Treschere in reply to BobD

Then would it be helpful to your stress levels Bob to recruit a couple more people to help you?

BobD
BobDVolunteer in reply to Treschere

A volunteer is better than a pressed man they say.

davebakerpurton
davebakerpurton in reply to BobD

But to be fair Bob cardiologists EPs and the rest of the medical profession and use the phrase quite commonly, you just have a bee in your bonnet about it.

Every medical person I have encountered has called them blood thinners!

I have no problem with the words blood thinners. I've heard doctors and nurses use it quite happily. On this forum why should we ban the term?

I am interested though in the effect of anti-coagulants because, in most cases, they don't stop blood clotting after a cut or a nose bleed. The clotting is done by the platelets in the blood.

It rather seems to me that the effect of the anti-coagulant is on an actual clot, something in it dissolves the clot. I would welcome more information about this.

BobD
BobDVolunteer in reply to Physalis

There are two ways anticoagulants slow down clotting. Warfarin works on the vitamin K side of the process by blocking certain enzymes from the liver whilst the DOACs work on FactorX which is a different level in the process. There is a good fact sheet on anticoagulation on the main AFA website which probably explains it far better than I can. Aspirin is an antiplatelet as you say NOT an anticoagulant which is useful to helping prevent platelets gathering in tight places (partially blocked arteries or around stents) but is pretty well useless at preventing the kind of clots which cause strokes in AF.

Physalis
Physalis in reply to BobD

I haven't got the time to look up all the stuff on the internet.

However, what I've gathered is that anticoagulants work on what is binding the clot together and cut it up so that the blood clot can disperse.

Even Sanjay Gupta has a video called "Blood thinners for AFib".

BobD
BobDVolunteer in reply to Physalis

Sorry they do not disperse clots that is a whole different class of drug.

Physalis
Physalis in reply to BobD

Well, what do they do then to clots to break them up? What class of drug does disperse clots? I really don't understand what you are saying.

BobD
BobDVolunteer in reply to Physalis

Anticoagulants prevent clots from forming. I am not a doctor or pharmacist so can't give you a list of clot busting drugs but they do exists and neither do they prevent clots- they dissolve them These are used when strokes have altready occurred totry and prevent permanent damage . Anticoagulants are used to prevent the stroke in the first place.

Physalis
Physalis in reply to BobD

I'll get back to you when I've got a bit more time!

Jajarunner
Jajarunner in reply to Physalis

I think it is all very complicated. I have tablets called Transexamic Acid which stop bleeding (for the chronic nosebleeds). BUT I can take them with theanticoagulents as they are not 'coagulents'. The haematologist did explain it to me........but I'm too thick to understand 🐻🐻🐻🐻

RoyMacDonald
RoyMacDonald in reply to BobD

Yes I was treated with a clot busting drug when I had a major stroke 18 months ago and went from full right side paralysis to back on my feet in three days.

I was refusing to take anti coagulants in the mistaken belief that a bleed would be worse than a stroke. Since having a stroke I've completely revised my opinion as doctors can do little to help if you have a bleed anyway. Keep plugging away Bob with promoting the correct definition.

👍

BobD
BobDVolunteer in reply to RoyMacDonald

Thank you Roy. Makes it all worthwhile. UK is very bad at making sure that at risk patients are anticoagulated compared with much of Europe and many GPs are to blame as they seem averse to prescribing. It was found a few years ago that most GPs feared bleeds over thrombotic stroke regardless of any evidence to the contrary. As an organisation we have been working for ever on this subject regardless of opposition but it has always been an uphill struggle.

So glad you were treated so promptly and so well. A relative of mine was not so lucky not helped most likely because his wife did not recognise a stroke and he went untreated for several hours. Speed is of the essence.

irene75359
irene75359 in reply to BobD

I agree. A first-hand experience. My daughter had corrective surgery for a congenital heart defect when she was 21. Because of her history, she was checked both during and after pregnancy when it was discovered she has an aneurism and a large blood clot in her coronary artery. The clot has 'lined' the aneurism, it is believed to be stable but to avoid potential problems she has to take warfarin for life. 'Blood thinners' the cardiologist said. Fast forward a couple of years, she had a superficial cut and there was a fair bit of bleeding which concerned her. She later casually mentioned that she had skipped a couple of warfarin doses because 'her blood was so thin'. I was utterly horrified. I managed to have a reasonable talk with her about the very real dangers of doing this, and she got it. She is by no means stupid, but she chooses not to overthink her condition with two small boys to look after, and she took what the cardiologist said at face value.

Auriculaire
Auriculaire in reply to BobD

Perhaps because a haemorrhagic stroke is more dangerous than an ischaemic one and more likely to result in death? I understand that they are more difficult to control. My husband's cousin died of one last year. The liklihood of one on anticoagulation is probably far less than that of an ischaemic stoke for the uncoagulated but maybe that is not what sticks in some doctor's minds.

davebakerpurton
davebakerpurton in reply to BobD

UK is very bad at making sure that at risk patients are anticoagulated compared with much of Europe

You're absolutely right there Bob, I had PAF for 6 years using only aspirin having been refused NOACS by my GP and local Great Western hospital on cost grounds, Oxford university hospital ordered my GP to give them to me, [I couldn't use warfarin as I travel abroad for at least 6 months of the year]

FlapJack
FlapJack in reply to Physalis

Sometime ago I emailed Dr Gupta about using the term Blood Thinners and he was gracious enough to accept that it was in fact inaccurate and shouldn’t be used but because it was commonly used, it was generally understood by my patients. He did say that he would avoid using it but we shall see. BobD is only trying to make sure people understand the distinction and allay any fears they may have about taking an anticoagulant. It may not seem important to many, but we avoid using the term because it’s likely that it adds concern to those who are prescribed anticoagulants. If people think their blood is thinner then they get concerned that any knock, cut or accident will bleed excessively and may never stop. In reality, an anticoagulant does what it says, it prevents your blood from coagulating into clot which can form a blockage resulting in a stroke. On the other hand, if you cut yourself it may bleed longer than normal but the bleed will stop. There are around 5 or 6 clot busting drugs which are used if someone is unfortunate and has a stroke. The sooner they are administered, the less likely the patient is to suffer from the potentially life changing effects of having a stroke.

baba
baba in reply to Physalis

Look up the "clotting cascade"

The term blood thinners is used everywhere, NHS, Wikipedia, etc, even the hospital medical form I filled in last week referred to "blood thinners", ok it may not be technically correct but who cares, everyone understands what those words mean.

Please carry on posting and use whatever words and phrases work for you and the rest of us !

Jalia
Jalia in reply to bantam12

Fair enough. For myself i prefer the correct terminology. If I'm asked if I'm taking drugs to thin my blood I would say no, I'm taking an anticoagulant ...Warfarin

Barb1
Barb1 in reply to Jalia

That's what I always say as well....and have to...often.

Billblue
Billblue in reply to bantam12

At last a sensible answer

FlapJack
FlapJack in reply to bantam12

You do it your way bantam and I’m sure you won’t mind if we do it ours. If using the correct term prevents one person who has just been diagnosed from thinking they might bleed to death if they cut themselves shaving then to us, it’s worth it. Especially if the fear has stopped them taking their anticoagulant.

bantam12
bantam12 in reply to FlapJack

I'm merely saying that the term is widely used and understood by everyone, no point in chastising me while all the medics and websites keep talking about "blood thinners". Being told off is really not necessary 😊

FlapJack
FlapJack in reply to bantam12

I’m not telling anybody off and personally I don’t care what you or anybody thinks about it. It just surprises me that folk do not understand the motives for using the right terminology ie to help recently diagnosed AF patients. Apart from anything else, anticoagulant had less letters!

bantam12
bantam12 in reply to FlapJack

You're replies are unnecessarily snippy, " I don't care what you or anybody else thinks about it" hmmm a tad rude ! I actually don't use the term blood thinners, just said it's understood by all.

Nuff said 😉

FlapJack
FlapJack in reply to bantam12

Exactly.....enjoy your day

Thomas45
Thomas45 in reply to bantam12

So what does "blood thinner" mean? To me it means something that thins blood. Why would anyone want thinner blood?

bantam12
bantam12 in reply to Thomas45

Why ask me, I didn't invent the term !

Thomas45
Thomas45 in reply to bantam12

You said the term was understood by all. No reply needed.

bantam12
bantam12 in reply to Thomas45

Didn't realise it was 'pick on Bantam12' day today 🤣

Thomas45
Thomas45 in reply to bantam12

Sorry that you feel"picked on". That was totally not intended.

I sent you a reply to your original post, I also touched onthe term blood thinners ....did you get it and read it.

Paul0208
Paul0208 in reply to carneuny

I'm sorry I can't remember what you said. I was just taken aback at being talked down to for using the 'wrong' terminology but we have sorted that now

Life savers I call them ❤️❤️

not sure, it's question mark! a few days ago a great actress from Romania died. Digestive hemorrhage due to the anticoagulant!

TracyAdmin
TracyAdminAdministrator

Hello everyone - Please do not hesitate to contact the AF Association website for information booklets and factsheets regarding Anti-Coagulation Therapies. Many thanks

Oh dear. ....am always grateful to those who have more specific knowledge on AF or other medical conditions when it enables me to develop further understanding. Knowledge is power and enables you to understand and manage your condition optimally. Knowing correct terminology is part of that. In this instance "blood thinners" is bandied around by medics as much as patients even though its not an accurate description.......this is a shame as it can lead to confusion.

I have to say my doctor and consultant have both used this terminology. This doesnt mean to say it is medically accurate. There lies the rub. Maybe they think it is "patient friendly" but that is belittleing and creates confusion in the long term.

I have been picked up by those more knowledgeable than me on this inaccuracy of description (not on AF though my knowledge on AF is very basic) which has also thrown me......but is also informative. Please dont feel demoralised or knocked down - that isnt the intention of the responder. They are just trying to make you aware. It can be hard to take but when it happened to me on reflection I found it helpful as it led me to a deeper understanding.

Bob D I appreciate your dilemma when answering so many posts and kindly offering your time - others who so kindly volunteer have some preset statements that they issue when us newbies make common blunders.....or maybe you need more volunteers to take the pressure off you if you feel you dont have time for longer answers? We need those explanations and the sensitivity that takes time.......in the end we turn into more knowledgeable members who can in turn offer more accurate support which will in the end lighten your load.......well thats the theory!! Having said that this site relys on volunteers like you who for free give their time to look after us and ensure fair play. Thank you.

I can easily be made to feel intimidated when people berate me for this or that on the Internet. As an English teacher, I've studied language over many years, and I have a good idea both why people react and respond in the ways they do. It's a fascinating area of study! In my own case, I was told not to use the word "operation" on this forum (or "op") for my ablation. Apparently, what I had had was a "procedure". :-) Well, I certainly felt like I'd had an "op", I can tell you - and my cardiologist called it a "small op", too.

I have, in fact, finally managed to get used to using the term "anticoagulants" as I sort of understand the reasoning behind it. I do still say "blood thinners" at times, however, where I feel its the clearest and quickest since it's by far and away the word most people use. This website is highly respected and doesn't draw a distinction: medlineplus.gov/bloodthinne...

I have no issue myself whatever with the use of either term and have never felt either infers anything unhelpful. To say that aspirin "thins the blood" for example, is also a very everyday generalisation of its actual effect on platelets but it conveys useful meaning nonetheless and it has entered the everyday vernacular whether it's a useful term or not.

You have my sympathy having to be on these ruddy things. I wish none of us had to take them, but there we are. In the USA, judging by one Facebook page, there's a lot more fear towards them but over here but my experience of them is, so far, wholly positive. An elderly friend has fallen twice, badly, while on them and has been bruised but absolutely fine both times.

I managed to forget mine two days ago! But I'm still alive to tell the tale! ;-)

Steve

Physalis
Physalis in reply to Ppiman

Some years ago my mother, who was about 90, was being visited regularly by the district nurses as she had cellulitis in her legs. The nurse wanted to do a doppler test so that she could have surgical stockings. Unfortunately, she told my mother that it was a small operation and that was it, no, she didn't want to have an operation and no explanations could change her mind.

Incidentally, I do find it a bit strange that doctors and nurses today are forever asking 'is that alright?' When my mother had a fall and obviously couldn't stay at home, the paramedic said 'can we take you to hospital', it was lucky she agreed.

Ppiman
Ppiman in reply to Physalis

Life can be a funny thing all round I reckon! 😊

FlapJack
FlapJack in reply to Physalis

How many years ago was that Physalis. I only ask because your profile says you are 84........

Physalis
Physalis in reply to FlapJack

It must have been about twenty years ago. Why did you ask?

FlapJack
FlapJack in reply to Physalis

Just hope I’m as switched on as you when I’m 84.......incredibly, keep it up!

Auriculaire
Auriculaire in reply to Ppiman

Also I doubt many people are familiar with the term anti -aggregant and anti platelet clumping sounds clumsy..

Don’t be disheartened, Paul. AF is disheartening enough at times!

And BobD keep on keeping on, you are doing a lot of heavy lifting here and other members cannot expect you to answer everything, there are other sources of knowledge about how anticoagulants work. My cardiologist was keen to use the correct word.

And as for “operation” or “procedure”, that is a complicated discussion, web full of conflicting information. Frankly, I regard my ablation later today as a Big Event whatever the name.

Many years ago there was an audit of “deaths within a few days of an operation per NHS Trust”. One Trust looked terrible - high deaths - until it was found that they had categorised “urinary catheters” as an operation so that their rules that went with “operations” were always followed, of sterile equipment and qualified staff etc. As most catheters were done on the dying the resulting numbers were high - and completely misleading.

The reference to “spontaneous bleeding” is confusing because risk of bleeding in the brain (aka hemorrhagic stroke) is proven to be increased by anticoagulants (blood thinners).

There are two main types of blood thinners:

Anticoagulants such as heparin or warfarin (also called Coumadin) slow down your body's process of making clots.

Antiplatelet drugs, such as aspirin, prevent blood cells called platelets from clumping together to form a clot.

waveylines
waveylines in reply to MS444

Wow didnt know that! So you take an anticoagulent and you are more at risk of a bleed on the brain? Ouch .......but if you don't take them you are at risk of a clot causing the same effect! How does one way that one up for a balanced decidion on anticoagulants?

Ppiman
Ppiman in reply to waveylines

Trust your doctor! 😉 The risk is tiny compared with the risk of stroke from the microthrombi produced in the aorta by arrhythmias. We’re all in good hands (including here thanks to Bob and other mods).

waveylines
waveylines in reply to Ppiman

Thanks Ppiman.....unfortunately I havent been on my anticoagulant for over 6months due to bleeding. Am on the list for an op but doubt that will happen until well into next year.

Ppiman
Ppiman in reply to waveylines

Oh my - bad luck. I hope you manage to get sorted soon but with the current mess, who knows what the future holds? My fingers are crossed for a successful vaccine. Strangely, I seem to bleed no more than normal even though I'm on rivaroxaban. Maybe your blood naturally clots less so you'll have a kind of natural protection?

Steve

waveylines
waveylines in reply to Ppiman

Thats my thoughts Steve. It was very unpleasant I bled from every orafice........I thought it was simple matter of reducing the dose.....apparantly not.

Ppiman
Ppiman in reply to waveylines

That would have been very frightening indeed. The things we go through! I just wish I were young again.

Steve

I am extremely grateful for advice given by those on this site more knowledgeable about AF than myself and that they take the time to share their valuable advice without which I would have been totally lost when diagnosed with P-AF .

I also appreciate that in sharing advice (sometimes as a matter of urgency) when time is short, posts may appear a little abrupt and I would have thought others might take that into account too .

I think rather than seeking to criticise anyone, we should all pause occasionally and think how lucky we are are to have this site, its members and 'Volunteers' who have been of help to so many of us 😊 .

Hi Paul0208,

just wanted to say its a mine field with terms that are used and which are correct etc. Also harder when words are on a page and you cannot see the emotion and facial expressions which also help (or they do me).

When I was first diagnosed with AF nearly 10 years ago now no information was given to me at the hospital, just a packet of Warfarin and an appointment to a clinic 3 days later. My questions went unanswered and I didn't even know why my heart was racing, scared I was going to die. I attended the clinic and was sent straight to A&E. It took 18 months before things started to become clear at the hospital but that was after I demanded a second opinion. I was sent to another hospital and for that I will always be grateful.

My sanity was saved and knowledge gained by finding this forum. BobD has been a mind of useful information as have lots of others on here...

Please don't be put off by the way information is given, lots of people benefit everyday and hopefully you will too. I don't always post but read regularly.

Good luck on finding the information you need, its hard sifting through the good as well as bad whilst trying to do the best for yourself.

Hi Paul,

re blood thinners (sic) - I have noticed that when I have one of my regular nosebleeds whilst on them, my blood is certainly waterier (is that a word?). A friend also commented on it (while watching me bleed!). It's just a turn of phrase. After all, I say nosebleed not epistaxis.

😆😆😆😆😆

Might as well mention that if you're on Plavix for AF, it's not strong enough to prevent a clot. Thru a small clot and it tossed me into a transient global amnesia episode. i

From the NHS website on Apixaban.

Apixaban makes your blood flow through your veins more easily.

The sentence is incorrect in that anti coagulated blood is no different from uncoagulated blood in terms of thickness and ease of flowing through your bodies organs. What anticoagulating blood does is increase the time it takes for red blood cells to join up in a stagnant area of blood flow (typical in an AF heart) giving time for a potential clot to be dispersed by the hearts pumping action.

I think Bob has his work cut out when even the NHS is putting out misleading information.

My late husband was on "blood thinners" and it most certainly did thin his blood, he was also on dialysis and he frequently didn't stop bleeding after his treatment so off we had to go to A&E, his blood was very thin and just kept flowing ! any minor injury and it was a bloodbath !

You can't determine how many red blood cells are in blood by just looking at it so how did you know it was thin in the sense that it had less red blood cells? Flow rate is not a product of how many red blood cells it has. If you've ever hit your head hard enough to break the skin it seems to bleed most alarmingly and forever even when you are not on an anti coagulant. The position of a bleed seems more important for how quickly the body deals with it.

Also the reaction of the observer or person experiencing the bleed who is alarmed by it and desires it to stop determines how thin they think the blood is.

Ppiman
Ppiman in reply to RoyMacDonald

Well put - it’s a very complex area indeed, hence the terms themselves, both of them, are intentionally simplistic and generalised. I don’t think the NHS puts out misleading information myself. I think they are spot on here.

Steve

Do you have any experience of dialysis ? patients are instructed to get to A&E if bleeding doesn't stop, my husband had 2 grafts and 2 fistulas and the vascular surgeons always had a problem with excessive bleeding both during and after the surgery because he was on "blood thinners". We were not "alarmed" by his bleeding because it was a regular occurrence, sometimes we could stop it sometimes not.

His death after heart surgery was partly because he bled so much which then led to ischemia and organ failure !

Oh and we were absolutely aware of how many red blood cells he had because it was tested weekly.

I'm really sorry to hear that your husband had such a difficult ending, life can seem so unfair sometimes. My father died (eventually) after having a massive bleed in his brain and that was very traumatic for the family.

His death also coloured my view on taking an anti coagulant when I was diagnosed with SVT, as I considered it was better to have a bleed as it might be possible to avoid death if it was a minor one.

Since having a major stroke and being on a stroke ward I have completely revised that view. I think I would rather die of a bleed than suffer the trauma of any more strokes. There is very little that doctors can do for a bleed but strokes are where they really can help in getting back to a normal life. Although at 77 something will get me sooner or later and there are no absolute guarantees even with taking an anti coagulant.

I think the upshot of this thread is that not only do we need accurate information and understanding of Afib but also the empathy of how much we can hear and absorb according to where we are on our journies. Although you would think its just a case of putting the info out there, its far more complex than that. We all have our fears and worries, beliefs and coping mechanisms, myself included, and so this complicates the process far more. Maybe thats why doctors these days in their 10min window keep it minimal and refer you to websites etc to find information.....that & limited time. Maybe you dont agree with me but I have noticed my self how when something jarrs me my resistance shoots up to look at it and consider whats being offered. This makes the job of all of us on here far more tricky but particulary the kind volunteers and those with a high level of knowledge on the subject. For this reason I dont think either the person who is delivering information/opinions or the person receiving it should berate/judge each other. Just recognise its a process for both sides and we all need time to evaluate and reflect and consider it in the conext of our own individual experience. We may not agree but respecting, not judging each others views leaves the conversation open to debate rather than shutting it down.

I thank you all as I appreciate this wonderful resource that wasnt availabel ten years ago.

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