My concerns about anticoagulation ...... - Atrial Fibrillati...

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My concerns about anticoagulation ... foolish or appropriate?

ozziebob profile image
36 Replies

I am 75 with 6 short AF episodes in 16 months. I am unmedicated at the moment except for the loading dose of Vitamin D3 I am now taking for a deficiency. I have my first ever cardiology appointment in a month or so, at which I expect the subject of anticoagulation will arise. I have no other heart related issues that I know about that would increase my CHA2DS2-VASc score, although the Cardiologist has arranged a cardiac echo transthoracic before our appointment, and this could affect my situation re other medications.

The issue that is concerning me around anticoagulation is that I suffered unexplained bilateral chronic subdural haematomas in October 2016. I recovered well with only a short course of steroids (which I didn't enjoy at all). But this has left me with a concern that I might have a congenital weakness such that if a similar bleed were to occur while I was anticoagulated, the outcome might well be less benign, and less manageable. Or am I being overly pessimistic re anticoagulation? I do feel in genuine confusion about my medical situation and the risks involved.

So does anyone in the Forum have similar issues that have made anticoagulation the wrong choice for them? Could you please share your experience and knowledge of not being anticoagulated so that I have more insight into the issues I need to raise when I meet with the cardiologist.

And, will I get a choice of anticoagulant in the NHS? or am I directed according to costs? I've noticed Forum members seem to be prescribed different anticoagulants, so how would I decide among them if I was given a choice?

Any advice on these concerns of mine will be well received. Thanks.

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CDreamer profile image
CDreamer

Hi firstly there is no such thing as a foolish concern, just concerns.

Firstly CHADSVASC score criteria - here is the link chadsvasc.org/

That will give you the % of risk per year of having a stroke if you are not taking anticoagulants - now remember that the risk will increase year on year so I just calculated my risk and it currently stands at 24% - that’s a 1 in four chance of having a stroke in the next 12 months if not anticoagulated. And I’m younger than you. And the risks only increase with age.

Now below that you will see a HASBLED algorithm - that’s the check to see if you are at higher risk of bleeds if you take an anticoagulant.

Discuss at your appointment and ensure you take all the correspondence regarding your haematomas, don’t assume that the cardiologist will have or looked at your history.

Managing risks are sometimes a difficult balance and you are never going to eliminate risk, but you could reduce it. It may be the cardiologist may refer you to a haematologist or ask for tests and consult but go to your appointment armed with knowledge and a list of questions and consider which are you more scared of - a none catastrophic bleed which in all likelihood could be treated and stopped or having a stroke? Fear usually drives decision making, we like to think we are logical and rational but in decision making it’s pure emotion but a little rational thinking may help!

I don’t think there is one of us on this forum who hasn’t had similar concerns and been through the process, it tends to be a personal decision but remember the consequences of stroke can be catastrophic, whether or not you survive. Personally I worked out I’m far more frightened of surviving an AF stroke than dying of either stroke or bleed.

You will have to ask your prescribing GP which anticoagulant as unless the cardiologist specifies a particular type, you are stuck with what your practice want you to take and the CCG dictate - unless you report side effects and push for a particular type. My surgery is very flexible and basically will give whatever you prefer and are not cost driven regarding prescribing. I refused to take Wafarin because at the time we were travelling or sailing a lot and there was no way I could manage my INR. I started on Pradaxa in 2013 because that was one of the first of the DOACs available here. Apart from the gastric issues, which I learned to manage, it was OK. I stopped anticoagulants after 12 months AF free following ablation and had a TIA so went straight back on them. I’ve not suffered another incident since being on Apixaban.

Which anticoagulant would you prefer? Apixaban and Edoxaban are quite similar - x2 daily, 12 hour half life and no special requirement to take with food. Rivaroxaban 1x daily, 24 hours half life and needs to be taken at same time of day with food. Pradaxa is a older drug and seems far less commonly prescribed because many people get gastric issues with it and then there is Wafarin - which some people still prefer.

Ask also about other treatments to reduce stroke risk for those who are not able to take anticoagulants such as the Watchman device.

The AFA have some good information on anticoagulation and alternative treatments so suggest you head that way.

Kaz wrote a summary in a recent post of the correlation between AF and Dementia which looked as though decreased with anticoagulation. There have been a few supporting studies with similar findings so another reason why anticoagulants may be recommended.

Hope that gives you some food for thought, I’m sure others will wade in with other offerings and hopefully some who have have taken other treatments to reduce risk or prefer to take nothing so you can get opinions from both sides of the argument but please remember that everyone responds very differently so another’s experience may be valuable to help you consider but will never be a predictor for how you respond.

Best wishes.

ozziebob profile image
ozziebob in reply toCDreamer

Thank you for composing such a detailed and helpful reply.The CHA2DS2-VASc link you gave, which includes the HASBLED calculation, revealed the most useful format for these I have seen. It seems my risk at the moment is only age related and a lowly 2%. However, I may be overly optimistic in this evaluation because I do have a family history of heart issues. This latter genetic factor pushes me towards anticoagulation, although I have consciously lived a healthier life than my parents and brothers. I frequently monitor my slightly concerning BP, and I also try to do 25-30 mins of exercise (cycling) each day as recommended for cardiac fitness, but my mobility now is badly compromised by my childhood polio. This means I have no access to walking for cardiac fitness purposes, and is a frustration to me. But "Such is life", as goes the title of a famous Australian novel. I appreciate my troubles are as nothing compared to others reporting here on the Forum.Your info about CCGs and their influence is worrying because I have just started a very large loading dose of Vitamin D (20,000 iu for 30 days) for a Vitamin D deficiency only recently discovered, and have been told by my GP (in a text, so no chance of any discussion) that she is not allowed to retest for my Vitamin D level for 6 months after the initial test on 30th March. How arbitrary and potentially damaging to my health is that dictate, which has obviously been made for cost reasons. I will now need to scramble about getting my Vitamin D level tested privately, which is absurd, but perhaps more common than I realised. I will certainly ask the Cardiologist (when an appointment is finalised) if he is able to organise this test. However the Surgery did say they could test my calcium level! Don't they know these 2 tests are vitally linked!

This NHS failure (or CCG) in monitoring my Vitamin D level during this treatment is aggravated because I suspect I may have suffered such a deficiency for many years undetected (because not tested), despite years of reporting general tiredness. All made worse because I sense my Vitamin D deficiency could well have contributed to the aetiology of my AF.

In this regard, I am still hoping against hope, as in the instance of Steven Carr's life and his remarkable testimony, that the aetiology of my AF is via an unknown underlying “metabolic” or “biochemical” imperfection or misalignment, rather than the usually suggested anatomical electrical abnormalities of the myocardial substrate. In Steven Carr's testimony it is Vitamin D and Calcium levels, and their monitoring that were vital in his personal "cure".

See carrafibdietinfo.com/

His evidence makes so much sense to me, and thankfully I haven't yet entered the world of ablations and powerful heart bending drugs. But it will be what it is, I'm just trying to understand my situation, as you seem to appreciate.

One more question, if you have the answer, are the do-it-yourself send-in-the-post Vitamin D level Testing Kits accurate enough for my purposes? or would I need to look for a proper medical blood test facility?

Thanks again for your thoughtful help so far. Any further comments are very welcome.

CDreamer profile image
CDreamer in reply toozziebob

My GP is a lot more flexible about VitD testing, purely because of the great influence of their colleague who is a Lifestyle Medicine GP and big into nutrition and partly because I recently developed oesteoparosis.

To answer your question - my understanding is that it depends on the test, most are Finger Prick tests which may limit the accuracy along with the Lab. You could research?

I have had private lab tests done via a blood draw - but you need a qualified person to order, do the blood draw and send it to a lab in an appropriate time frame - so therein lies the difficulty. Our local hospital, which is a Foundation Trust organisation, decided it was a good money maker so prior to COVID, made their in house lab spare capacity available - they used to charge £40 - you went to the hospital for the blood draw. Unfortunately all that went by the wayside when COVID hit and the chances of getting any none essential blood draws through NHS are pretty much zero.

Frustrating when you want to take response ability for your own health, have the capacity to be able to do it and self monitor.

You might try your GP again and ask if you paid for the test and the blood draw, would that be possible?

I think if you had a baseline figure for VitD ie: had a test before you started treatment and then regularly thereafter from the same testing lab then at least you might stand a chance of monitoring. Only other option would be to see a Lifestyle Medicine doctor who would delve deep into your history and current lifestyle and order a bunch of tests, many useful in their own right and then advice accordingly. Having been that route you are looking at expenditure of about £1500 so depends upon how deep your pocket is and finding a good practitioner in your area.

There are a few people on the forum who know a LOT more about VitD than I so maybe they will chip in but one warning - excessive amounts of VitD cause kidney stones - my neurologist was very clear with me that I needed to be very careful self dosing. Indeed I ended up with kidney stones……..

There is a strong relationship between Calcium and VitD - Calcium cannot be properly absorbed with good levels of VitD - which in turn needs VitK3 to be absorbed. When you get into the micro chemistry it becomes quite a minefield. There is also a direct link between Calcium and Magnesium and you need those two minerals to be in balance for good electrical conductivity within the heart. Managing all of this is way above my pay grade so I rely upon my GP. I have blood draws every 12 weeks so the cost of adding on another test is minimal and as long as I don’t push it, they are usually co-operative because they know I do as much as I can to manage my health and well-being myself..

We are moving house in a few weeks time and going to have to go to a new health authority, GP surgery etc. Not looking forward to the change and anticipating a few battles.

Best wishes.

etheral profile image
etheral in reply toCDreamer

Have a smooth move and hope your new docs are suitable, etheral

ozziebob profile image
ozziebob in reply toCDreamer

Thanks again for your very relevant and helpful extra contribution. Your advice re pursuing Vitamin D tests is very welcome, and the detail appreciated. I will be asking my Pharmacy if they can suggest something as a first step. And I will definitely raise the tests I need with the Cardiologist. I would like to ask at the Surgery, but my experience in this regard is not positive.As you said, a lot depends on your GP, and mine, though a senior partner in this multi-GP practice, which seemingly makes her an intimidating figure among the Surgery staff, now works part-time (officially 2 days a week) although obviously overworked in these Covid times, leaving no time at all for face-to-face contact with me. I get no phone calls to explain matters, even the result of the 24 hour Holter I had after my first "shattering" AF event, when I reported I thought I was dying.

In my recent emergency Surgery visit to obtain an ECG (unsuccessful) while in an AF event, I was seen by a different GP. However, I had no further contact from her about the results of the referral or blood tests she initiated. The first knowledge I had of anything was an unexpected, and frightening, text fro my local Pharmacy stating "your medications are now ready for collection". What medications! As a currently unmedicated patient, and wanting to participate in all decisions about any potential medication, I was horrified. Obviously I was thinking the worst, as is my way, but a simple phone call from the Surgery from the GP beforehand could have avoided all my angst. I then had to send an eConsult which resulted in a text some days later from this GP explaining that the script was for Vitamin D, and a first mention of a Cardiology referral, but no details about levels in the blood or follow up tests. Then it took a long wait over the 4 days of Easter (Surgery closed) before I could deliver a letter to this new GP asking about doubts I had over the massive loading dose of Vitamin D I had been prescribed and was now taking, doubts shared by others on this Forum. Even that didn't go to plan as I was informed this GP had just gone on 4 weeks annual leave. Doh! Is it me! Anyway, I hurriedly readdressed my letter to my official 2-day GP. 3 days later mid afternoon I suddenly got 2 texts from this GP cutting my original prescription from 30 days to 15 days, but no real explanation, and leaving me no wiser, just more confused. Then a 3rd text arrives within minutes stating she can't do another Vitamin D test for 6 months. Now this GP and Surgery was chosen by me some years ago when the GP I then had never looked or listened to me when I talked about ongoing mobility and pain issues I had following my childhood polio. So I went from the fat into the fire!

My initial thoughts about getting apixaban if needed are not positive. If I need help to get this from my GP I am doomed!

This GP is the one who failed to get any specialist help for me about my polio issues, despite my requesting such. All in pre Covid days. And she failed to get an AF referral or the promised phonecall from Guys & At Thomas's AF Clinic, overwhelmed as they obviously are.

I can only pray I finally receive a more sympathetic medical expert when I meet a Cardiologist.

At least we're both still in the fight.

OzzieDreamer.

GuyThoma profile image
GuyThoma in reply toCDreamer

I had the proper expensive blood in a testube assay for Vitamin D. I also use an app called 'dminder', where daily I enter Vitamin D supplements or sunbathing. It's estimation was almost identical to the result from my proper blood test, so I trust the 'dminder' app - provided you feed it the correct information.

ozziebob profile image
ozziebob in reply toGuyThoma

Thanks for info about dminder, I hadn't thought of that route.Incidentally, where did you get your "blood in a tube" assay for Vitamin D? and how much did it cost?

GuyThoma profile image
GuyThoma in reply toozziebob

Black country pathology services Vitamin D

I had one of their cheaper finger print tests, the result was unsatisfactory, probably my fault because I didn't produce enough blood.

However, I wrote to them and they offered me the more expensive test for free: new problem, how to get a blood sample out of my arm, and into the test tube. Solution, more kindness, this time the phlebotomist at my local surgery took a blood sample and posted it to the lab in Dudley.

bantam12 profile image
bantam12

I was given a choice of which anticoagulant to take, I chose Apixaban as it seemed the preferred one with less side effects.

ozziebob profile image
ozziebob in reply tobantam12

Thank you for replying. Of course I would like to avoid all medications, and I am still working on it. See my longer reply to CDreamer re this latter point.And, if needed, I seem to be leaning towards apixaban as well, so your comments help.

in reply toozziebob

Apixaban was the one given to me when I attended A & E with my first episode of AFib, and has since been prescribed by my GP (though I don't take it). It seems to be the anticoagulant of choice by the NHS quite commonly.

The general thinking is that anyone who is diagnosed with AF, regardless of type or frequency, is facing an increased risk of having a stroke. Once diagnosed, the need to take an anticoagulant as you rightly say, is determined by their CHADs score. To determine their risk of bleeding, there is a HASBLED score which is similar to CHADs and helps to assess the risks associated with taking an anticoagulant. Neither tests are totally conclusive so I think it would be difficult for any non-medically trained person to advise you and I have total sympathy with your dilemma.

As far as which anticoagulant to use, regarding DOAC’s, the general thinking is that Apixaban offers a very slight reduced risk of bleeding and because the dose is for 2 tablets x 24 hours, it’s a bit easier to manage for procedures or surgery. Edoxaban I believe, is the cheapest and is often GP’s will use it when possible. Rivaroxaban needs to be taken with a substantial meal otherwise it’s not as efficient as others and can sometimes cause digestive issues. All require blood tests to check kidney function is sufficient to disperse unused chemicals. Any patient should be able to ask for a specific DOAC particular if they have legitimate concerns or issues which makes one more suitable than the others.

Of course there is still Warfarin which is still used extensively and for many who have a stable INR, they wouldn’t consider changing to a DOAC.

I’m not sure how helpful this response will be and it will be interesting to hear what others have to say but I think you will have to be guided by professional advice to do what is right for you…….good luck

Thanks Thomas!

Engineer46 profile image
Engineer46

Bob, I’m 76 with permanent AF diagnosed last September. Other than having an irregular heartbeat I have no symptoms and feel fine. I take the anticoagulant Apixaban 5mg twice a day and have not experienced any side effects. I also take 1.25mg Bisoprolol once a day to reduce heart rate from around 110 to around 80 and have had no side effects.

I suspect that hereditary factors and occasional binge drinking led to my AF, so I have cut down my alcohol consumption.

Your post says that you have paroxysmal AF (ie episodic) and indicates that you are almost always in sinus rhythm, when your atria are pulsing at a normal rate, unlike mine which are constantly pulsing at 300bpm or more, although I can’t detect that. At that rate there is a chance that a pool of blood could stagnate in an area of the atria and potentially lead to a stroke, so I take Apixaban as a precaution. The fact that you haven’t yet been offered an anticoagulant also suggests that you are normally in sinus rhythm.

So unless your AF becomes more persistent, or there are other medical reasons, anticoagulant may not be suggested for you. I wouldn’t be too concerned at present and have a good discussion about it when you see the cardiologist.

Best wishes,

Paul

ozziebob profile image
ozziebob in reply toEngineer46

Thank you for your positive and helpful reply.I haven't been anticoagulated because I was generally fit and under 75, but I just turned 75 and NICE guidelines don't like that. And despite having paroxysmal AF for 17 months now, no medical diagnosis was made until 30th March just past, nor have I had any contact with any heart or AF specialists. I've had earlier promises of a referral and phonecall from Guys & St Thomas's AF Clinic, but nothing eventuated sadly. All understandable during Covid I suppose. It was only when I went to tlmu local Surgery on the 30th March to get an ECG during an AF episode that I was officially diagnosed and now have been referred to Cardiology at Royal London Hospital. Comically, but not unexpectedly, I still haven't had any ECG because the Surgery ECG machine was being recalibrated just that morning, and so unavailable. And then my AF stopped within 30 mins of leaving the Surgery.

If you read my recent reply to CDreamer you will see there are other complications around anticoagulation, as well as my hopes for the aetiology of my AF involving a current Vitamin D deficiency.

I welcome your experience of apixaban, which was where I was leaning, although choice seems to be heavily controlled in my east London area by dictates from the CCG.

My AF events have generally been at heart rates within the lower range (75-95), although I have also experienced several short periods of tachycardia at about 150 during 2 of these events. I am still being positive and hoping to avoid ablations and all powerful heart-bending medications. Steven Carr's experience is paramount for me at the moment. Time will tell.

Thanks again for your help.

Thomas45 profile image
Thomas45

By way of explanation. The newer drugs which were called NOACs are now called DOACs. I prefer Warfarin as I have my own test meter, and can test the coagubility of my blood at any time. The coagubility is called the International Normalised Ratio, better known as INR. I was put on Warfarin but my INR would not stabilise so I was put on Rivaroxaban which caused problems. My GP let me choose what to take next, and I chose to buy a CoaguChek meter and go back to Warfarin. My INR had been stable since then, about eight years ago.

in reply toThomas45

👍

ozziebob profile image
ozziebob in reply to

Very helpful explanation. My brother in Australia was on warfarin for years, blood tests and all, but was changed to Pradaxa (Dabigatran Etexilate) by his specialist. However he does also take a cocktail of other powerful drugs for heart related issues and an anticonvulsive drug for ongoing epilepsy since childhood, and I don't know if this was involved in reasoning for the change of his anticoagulant. I see from Forum contributions that Warfarin is still, surprisingly but well noted by me, a first choice for some. I fear in East London where I live that the CCG could well be an obstacle to my choice of apixaban, if needed. I just learned the CCG won't authorise a retest my Vitamin D level for 6 months despite just starting a massive loading dose of Vitamin D. That doesn't make sense to me.Thanks again.

in reply toozziebob

I think a lot will depend on what your Consultant thinks when you see him next month. I was changed from Warfarin to Apixaban about six years ago and have absolutely no regrets. Although Warfarin was a bit of a faff, it only presented problems when I was abroad and maintaining a stable INR became a challenge. CCG’s obviously vary around the country but from what we are hearing on the forum, almost all newly diagnosed folk are put on a DOAC and Edoxaban is the one which the beancounter’s favour. When your Consultant is made aware of your history and your concerns and if Apixaban is the route you feel you would prefer then I’m sure he would be prepared to recommend it on your behalf.

Based on general information we are told that AF is a progressive condition and has been said, the stroke risk also increases with age and having worked with stroke victims, nothing would stop me from taking my anticoagulant and after two ablations, I am (as far as I know) AF free.

The other thing to bear in mind that there are circumstances when half doses are recommended for DOAC’s. This relates to age (over 80) and/or low weight issues but it might be worth discussing with your consultant…..all the best.

ozziebob profile image
ozziebob in reply to

Thanks for update. I will keep in mind the half dose information when I eventually see the Cardiologist. As for AF being a progressive condition, if you see my other longer replies you will see I am still hopeful, along the lines of Steven Carr's approach, of avoiding that fate completely. I am currently dealing with a Vitamin D deficiency, which deficiency also plays a vital part in the aetiology of Steven Carr's AF. But the evidence will be as it is. In the meantime the Forum help is greatly appreciated.

ozziebob profile image
ozziebob in reply toThomas45

Thank you for your reply. I think I lost my reply to you in my reply to FlapJack. Please read that as my reply to you as well. My only device is a phone and it seems the details of my replies got lost on my small display. Apologies. I appreciate your helpful contribution.

secondtry profile image
secondtry in reply toThomas45

A CoaguChek meter sounds interesting and the first time I have seen it mentioned here. May I ask which brand and why?

Thomas45 profile image
Thomas45 in reply tosecondtry

Roche who make meters for hospitals and medical centres make meters for home use. I was unaware that there were other makes.

secondtry profile image
secondtry in reply toThomas45

Brill!

ozziebob profile image
ozziebob in reply toThomas45

Would a CoaguChek be useful for people taking DOACs? or just Warfarin?

Thomas45 profile image
Thomas45 in reply toozziebob

Just Warfarin. Doacs work in a different way.

RoyMacDonald profile image
RoyMacDonald

My experience was I was diagnosed with an AF (SVT) but did not take the prescribed Apixaban as I was afraid of having a bleed. After 18 months when I was 75 I had a major stroke and was completely paralysed down my right side. Fortunately I made a good recovery thanks to the NHS, but I now take the Apixaban religiously and am 78 now. Your choice though.

All the best.

Roy

ozziebob profile image
ozziebob in reply toRoyMacDonald

Thanks Roy. I have had 2 short episodes of tachycardia, but my past unexplained brain bleed is my biggest concern going forward.

I feel much better informed after the contributions of the Forum today. I will certainly discuss everything with the Cardiologist, but no date yet, just a letter that it will happen.

If you read my comments today about my re xoeriences at my local Surgery and GP, you will see I am pinning my hopes on getting a Cardiologist who can listen and hear my concerns. Not too much to ask surely.

By the way, my older brother did also have a major stroke in his 50's from stress and overwork and smoking and undiagnosed AF, leaving him paralysed on one side and sadly dying 10 years later, still way too young. And my younger brother is drugged up to the eyeballs for heart issues including Pradaxa, as well as another debilitating anticonvulsant to control his epilepsy. So far, with my family history of heart issues, including my mother & father, I have gotten off lightly.

As Dad's Army's Private James Frazer said "I tell ye ... we are all doomed ... doomed I say" or similar.

It is what it is.

Thanks again.

GuyThoma profile image
GuyThoma

I am coming up to my 3rd year of taking Apixaban. My dose was the default 5.mg. After a year I had 7 nosebleeds in 2 months. My solution has been to cut the pills to 3.75 mg, since taking this reduced dose I have had no more nosebleeds. [Warning: doctors probably frown on this action, but I cannot see a better solution.]

There is a practical problem with Apixaban, forgetting to take the second dose in the evening, I solve this with an app called Medisafe, which reminds me when I forget.

ozziebob profile image
ozziebob in reply toGuyThoma

Thanks. One suggestion I acknowledged today was that it's best to start with the lowest possible dose and progress from there. I will keep your dosage experience in mind as well when I meet the Cardiologist. Mind you he might suggest a different anticoagulant, as well might the CCG.

GuyThoma profile image
GuyThoma in reply toozziebob

I also take the beta blocker Bisoprol to control my heart rate, that drug clearly needs "Titrating" starting with a low dose.

However, MY amateur understanding for Apixaban, and other DOACS, is that you always start at the recommended dose and that's it! The goal of the DOAC is to reach a concentration that inhibits coagulation. [Whereas the goal of the beta blocker is to keep trying until you get the heart beat down to the desired level.]

One more thing: my cardiac consultant said his greatest worry was his patients having heart attacks, thus it was imperative that I took Apixaban or equivalent.

MoyB profile image
MoyB

For what it's worth, I completely understand your concern. I had a small GI bleed some years ago and it's always at the very back of my mind that the anti-coagulant could cause something worse. However, I balance that with the thought that a stroke could be devastating.

The background anxiety never quite leaves me, though, however much I tell myself it's not a problem because I take other meds to protect my stomach.

I also feel anxious if I ever bump my head! A major bump from a fall/faint gets checked with a CT scan, but the other day I bashed my head getting into the car while we were away from home, and I worried for days every time my head ached slightly as I wasn't able to get it checked out at the hospital.

But mostly, I just get on with life, happy in the knowlegde that, with luck, the Apixaban will prevent anything too major happening. The good thing about that one is that it leaves your system quickly (hence the need for it to be taken twice a day) so you don't have to stop it for days or weeks before a medical procedure. I also find that I bleed less with Apixaban than I did when I was on Clopidogrel as I used to bleed for England then with the smallest cut.

I don't know why I was changed from Clopidogrel except that I was phoned and told that Apixaban and another anticoagulant were now considered a better option. I was given the choice of two meds and chose Apixaban, though can't remember why.

I think you're doing the right thing trying to avoid any unnecessary meds, but sometimes we have to bite the bullet and go with the medical advice.

It may be that you won't be offered the anticoagulant yet but if you are, at least you will have a wealth of info behind you now to help you make the decision whether or not to accept it.

xx Moy

ozziebob profile image
ozziebob in reply toMoyB

Thanks for finding time to reply, and your welcome reassuring words. I feel I should be helping you. You GI bleed sounds horrendous, and I understand the anxiety you consequently carry.Did you ever get an understanding of what caused your bleed? or is it still unknown?

I only discovered my brain bleed by having my left hand become paralysed several times over a week, but only for 5 mins each time. I was then referred to A&E from my local Surgery in the days when it was possible to see a GP face-to-face. I even cycled to the A&E at Royal London. Then an emotionally paralysing 7 hours followed as I was negatively tested for all other manner of brain events, which was finally resolved when a neurosurgeon identified the bilateral chronic subdural haematomas. As the bleed was thankfully no longer active (I think that's the reason, or perhaps poor imaging), I could barely see the areas of blood involved because of a lack of contrast in the scan image. However in a later scan 2 weeks later to check my healing progress the scan image clearly showed large areas of the blood pooled extensively across my brain. I was a bit shocked at the size and depth and extent of the now dormant blood. The only treatment I had was 10 days of steroids (horrible that), and the blood was allowed to be reabsorbed into my tissues in the following months. I had no further instances of paralysis thankfully.

Later at various neurology outpatient appointments I tried to get an understanding of the cause, but none was forthcoming from any of the multiple neurosurgeons I encountered. It was certainly no blow to the head in my case. "Straining on the toilet", an everyday practice of most humans, was offered as a realistic possible cause. Stress? Worry? Yes I do worry about the smallest things. But I just don't know. And there's the rub!

Permanently in my mind is that scan image of the resulting pools of blood in my brain, and it's width and depth. Along with the question now as to "what if". What if I had been on anticoagulants then? Perhaps I'm being overly dramatic ... and I recognise that in me as well.

But your similar experience is definitely helpful to me. And the mentions of apixaban. Thanks again.

"MoyB" things will turn out OK.

MoyB profile image
MoyB in reply toozziebob

My experience doesn't begin to compare with what you went through! I didn't ever get a reason for my GI bleed. They decided not to do an emergency endoscopy and I had one done over a month later having been sent home to get on with it. It was not one of my better NHS experiences. These days I would put in a formal complaint about my treatment that night, but I was more in awe of the staff and the system then than I am now so I just accepted it at the time and moaned about it to the family!

I hope things work out OK. xx Moy

Sacstate profile image
Sacstate

Hi Ozziebob,

I’m also 75, male. Though I have had palpations all my life, I had my first obvious AF event that lasted 8 minutes in December, 2021, followed in the next several weeks by 4 more events lasting 5 hours, 7 hours, 2 hours, and 50 minutes. A Holter monitor diagnosed the AF during the 2 hour event. I now take 50 mg Flecainide twice daily and 25 mg metoprolol once daily. Prior to the Flecainide, I had an echocardiogram and a treadmill stress test which revealed my heart to be without any structural problems, no clear cause atrial fibrillation episodes. Since taking the two meds, no AF. Because of my age, my CHAD score is 1/2 here in California. Otherwise I am healthy and very active, take no other meds, so my cardiologist advises that the risk of taking an anticoagulation would far exceed the risk of stroke. Am very pleased not to take an anticoagulation.

ozziebob profile image
ozziebob in reply toSacstate

Thanks for your helpful perspective on my concerns.Did you mean "palpitations" rather than "palpations"? I'm assuming yes.

In UK you get 2 points for turning 75 and the almost automatic offering of anticoagulants. In fact there are some who want them prescribed more widely in the population to prevent strokes. Is this "big Pharma" in action? I wonder. And recent research suggests anticoagulants may prevent dementia(?). But, like you, I want no part of any medication if I can avoid such.

I have no experience of flecainide ... are you taking that to lower a generally fast heart rate?

Re my situation and it's causes, I have just discovered a Vitamin D deficiency that probably began around the time of my first AF event 16-17 months ago. As we seem similar in having generally good health and are generally active, and no other identified heart problems, and both have no interest in medications unless unavoidable, I am wondering if we also have similar causes for our AF. Probably unlikely, but you might be interested in my efforts to investigate the aetiology of my AF. And my first step is to understand what part my Vitamin D deficiency may have played in this. So I was then led by others on this Forum to the outstanding evidence provided by an Australian Steven Carr.

See carrafibdietinfo.com/

Please read his story and "cure", you will be rewarded for your time.

So with my "coincidental" Vitamin D deficiency in mind, I am still hoping that the aetiology of my AF is via an unknown underlying “metabolic” or “biochemical” imperfection or misalignment, rather than the usually suggested anatomical electrical abnormalities of the myocardial substrate, as Steven Carr writes. And in Steven Carr's testimony it is Vitamin D and Calcium levels, and their monitoring that were vital in his personal "cure".

So I advise you check your Vitamin D levels of possible. Even in a hot and sunny climate like California there's no guarantee that at 75 you are able to maintain the Vitamin D level you need. And remember Steven Carr also lives in a hot sunny climate in Australia.

Please do contact me again if you find the Steven Carr testimony helpful.

Thanks again for your helpful reply,

Bobstate

Sacstate profile image
Sacstate

Hi again. Ozziebob,

Yes, I did mean “palpitations.” I guess we’re still having trouble getting the English language right, here in the states, chuckle, chuckle. The Flecainide treats heart rhythm while the metoprolol treats pace. As I said, I have not only had no AFib since taking these drugs (at lowest doses, by the way) but I also have no palpitations, PVCs, etc., as I had frequently throughout my life. So, with no AFib, it feels perfectly comfortable to me NOT to take anticoagulants. I hate taking the Flecainide and metoprolol, but love how they control rhythm and pace (so far) so I’m not complaining. However, I think I would be terribly uncomfortable adding an anticoagulant just because of the risk of serious internal bleeding somewhere.

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