I'll try to be as brief as possible! January 2019 I was diagnosed with a pulmonary embolism in both lungs and also AF and flutter. After various unsuccessful attempts to correct heart I had a catheter ablation June 2019 . Responded well and put on Bisoprolol and anticoagulants which I was told would be for life. I have been reasonably well apart from the odd blip which I have managed to cope with at home. January 2023 I had a nasty experience, AF ,flutter, feeling dizzy etc . Saw gp next day and he referred me to Liverpool Heart hospital with was new to me due to moving house 3 years ago . Eventually saw new consultant few months ago and he arranged for a 2 week monitor.
During this time I had a blip over 48 hours , not feeling great .
I have received his report and to my utter surprise he said he was removing my anticoagulants as during the 2weeks I was predominantly in sinus rhythm with only minor atrial arrhythmia detected and some paroxysmal AF with a burden of 7%.
He also cancelled my 6 months review.
I am 69 , female, family history of clots and heart disease/attacks.
Although I hate taking any medication, removing my anticoagulants ( no mention of Bisoprolol) is making me very nervous especially after having had a severe embolism.
Any thoughts/advice?
Sorry for rambling!!
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Nafi
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As you will appreciate we are not medically trained and therefore you need to talk to your doctors about your concerns.
In my unqualified humble opinion I think you are right to be concerned because the most dangerous time, as I understand it, is when the heart returns to NSR after being in AF. Anticoagulation being prescribed to minimise the risk of clots forming and being ejected from the atrium into the blood stream.
This is more often the case with PAF as this is by definition paroxysmal (happens off and on)
I think you should try and ask and maybe get a second opinion.
After a history of AF I have been on Anticoagulants for many years. I have been in NSR for 2 years yet my EP (very special and highly experienced) believes it to be appropriate.
Thank you for your reply Pete , I literally only received a copy of the consultan's letter today and plan to try and discuss my concerns with my gp as soon as possible. A second opinion is the way I was thinking of trying to go . Not sure how easy it would be on NHS. My gp is reasonably easy to talk to but he always says cardiology isn't his field.
I was told previously to this that I would be on them for life .
You definitely have the right to request a second opinion from another Cardiologist under the current guidelines , and I'd definitely recommend that you get one.You are right to be concerned with your previous medical and family history, and you need confirmation and clarification from another Consultant, rather than the GP alone . You can ring the Cardiology Department to request it yourself or ask your GP to do this for you if it's too stressful for you.
Specialists can sometimes be a law unto themselves and if this one hasn't taken your history into account when making the decisions it needs rechecking.
Finding out the full medical reasons why they think this was appropriate would also be helpful to find out before you go to the second opinion appointment.
I had two different Cardiologists make two different decisions at two different hospitals from different Holter and Tilt table results when they were looking to diagnose my Dysautonomia.
In the end, I had to request a second opinion at one hospital from a Consultant with more knowledge of my condition before a decision on my diagnosis was made. It was very stressful sitting waiting in the unknown until they got another EP involved , had another Holter test done, and other tests as well, and then an opinion was finally agreed upon.
You can't take chances , so it would probably be worth asking your GP if you can remain on your current medications until you've had an appointment for a second opinion and a firmer care plan for the future which you agree with set in place (as long as they aren't causing you any problems, of course).
I hope this is resolved for you soon , and well done for reaching out and posting about your concerns , I know it can be hard to do. If you need to talk and discuss anything else to do with this don't hold back , and please update us with how you get on , take care , Bee
Thank you Blearyeyed, I will contact my gp first as he has received the same letter obviously and see what his thoughts are. He is usually quite approachable, when you can actuallyget an appointment . If for any reason he isn't willing to arrange a second opinion/find out the reason for consultants action I will definitely get onto it myself. I really appreciate your support, living and dealing with this by oneself can be stressful.
Whem I was 70 years diagnosed Stroke, Rapid and Persistent AF. Clear carotid arteries. Type of Stroke - Embolic Ischemic. The base hospital put me on 110mg x twice day PRADAXA.
150mg x twice day is the other dosage.
I read that no anti-co.agulant should be give if you are a cancer patient. Risk of iternal bleeding.
ECHO shows I have a severe dilation of. left atrium causing AF with corresponding Right Ventricl regurgitation, mild leaky mitral value, soft systolic heart murmur.
I was diagnosed with thyroid papillary cancer 4 days into the stroke stay.
I had total thyroidectomy within 4 months with endocrinologist arguing that I had to wait 6 mths.
At 4th Neck Scan I have been recalled. 3 areas have calcified. The CT scan with cntrast was not clear enough and the PET /CT with contrast did not have imaging to compare so I have to wait 6 mths for another cT scan with contrast. Immediate MRI with contrast of my pituitary gland which showed 'warm'. Otherwise A1.
Is there a reason not to be careful of anti-co.agulants like fear of iternal bleeding?
I think you should be able to get a second opinion - most hospitals have at least a few cardiologists. I was referred to one who I had previously encountered - he was cold, dismissive and very abrupt. So I asked if I could see someone else and there was no problem. I would definitely seek a second opinion,
The cardiologist at my local worthing hospital told me i read the Daily Mail too much whhen i complaineed about Statins and joint pains when lying down at night. I didnt at the time but i do now read the daily mail and i dont see him and i dont take statins after reading the great cholestrol con by Dr malcolm kendrick and dont have joint pain anymore. Round and round the mulberry bush life is short enjoy it while you can .
I suppose it’s like any profession - the majority of cardiologists are amazing, highly knowledgeable, compassionate and able to communicate with their patients. But a few, it seems, can’t!!
Your new consultant must have had a reason why he stopped the anticoagulant. It would be enlightening to now the details why? Though, like you, I also find that confusing since you had mentioned with the 2 week monitor it did pick up paroxysmal AF even though very low burden.
I’m not a doctor, but was the consultant balancing taking the anticoagulant which can cause a possible bleed along with something else in your medical history as opposed to your very low burden of AF?
But most importantly going forward, I’d express your concerns about stopping anticoagulation, given your past PE, family history and CHA₂DS₂-VAScs. Respectfully ask him for the rationale behind the decision and what were his guidelines. If that's not possible can you take this information and your medical history to another doctor and ask the same questions? Peace of mind is important.
Thank you FraserB for replying. I have absolutely no idea the reasoning behind this, the letter doesn't explain why . I am not aware of having any medical condition that could result in this action.
I am not sure that I am able to ask the consultant directly as I don't have any contact details but I will certainly be in touch with my gp to see if he can help find out .
It is just contrary to everything I have been told previously and not a gamble I want to take .
Seeing your GP or another doctor is a good decision. A doctor or consultant should be an advisor giving their medical reasoning for their decision in consultation with you. Trust is important. I know this sometimes happens only in an ideal world especially with limited resources and time constraints. But if it doesn’t then many people lacking information are confused because they never had those two way conversations. And some will only go home and start Googling.
Thoroughly researched medical information from a doctor with their reasoning even if it only takes 5 minutes is important and influences perception. You're not alone with this, many people see a second doctor or medical specialist.
To be honest I feelt the consultant was somewhat disinterested in my 2023 episode , and gave the impression he didn't know why I had been referred to him . Not a great first experience with new hospital. I was very lucky with my original consultant at Sussex County, he spent time explaining things and very human .
I also wasn't impressed by his reaction to my question as to whether they had specialist nurses available to support patients as Sussex County has . His response was just to dismiss the question with a wave of his hand. The nurse who did my ecg confirmed that they did and to ask the consultant!"
Gosh. I would also be concerned at losing my anticoags and esp. with a family history of heart issues and embolisms.I had one that caused a TIA .Try calling the B.Heart Foundation nurses and see if they can advise a course of action.
I think in your shoes I would ask your GP to a) write to the consultant asking his reasoning as to stopping anticoagulation and expressing both your concerns and hopefully their own! b) ask for second opinion.
I would also suggest you ring the AFA and ask for advice and refer your GP to them for information and advice. My own thoughts are you need something in writing.
Thank you CDreamer,Yes I will get in contact with my gp and take it from there . I am not willing to stop taking them without a very good reason and preferably a second opinion.
Hi Nafi, I believe you are quite right to be querying this as I would too, having had a stroke caused by my P/A/F and likewise told on anticoags for life. If it was me, I would go back to my GP and discuss and request seeing another consultant if he/she doesn't agree then take it further up the line. If you can afford a private consultation, around £250 I think, then that is an alternative but whatever you do, even for your own peace of mind, get a second opinion.
Thank you opal11uk . I am definitely going to do as you suggest. Financially, private is probably beyond my means but if I absolutely have to I will find it somehow.
Ask for an alternative opinion. You are not bound to accept just one judgement, and no consultant is God, even though so many think they are! You are entitled to an independent alternative opinion and if the NHS won't do that, make a complaint. There are of course consultant cardiologists available on line, some of whom are well accredited and work in prestigious hospitals. Although it costs quite a lot for a half hour consultation they will give you an accurate view of risks and benefits, and when it is our lives at stake, it is well worth the money.
I can't add much to the many replies you have had, but, like others here, I think you you are right to be feeling concerned and do need a chat with your GP. The problem with the heart is its complexity added to the chronic nature of changes that affect it. The end result of this, showing itself as arrhythmia (e.g. AF or AFl) is only a visible result of other, fated long-term and sometimes undetectable changes in what is called the "substrate" of the heart, i.e. its muscle and conducting cell system along with its own nerve and blood supplies. This means that each case can be, if not exactly unique, only possible to determine through careful investigation and clinical history. There will always be good reasons for a specialist's prescription, however odd it might seem so what has happened to you should have a good explanation and that will have been made clear on the specialist's letter.
That all said, so far as I know from reading studies over several years, the cause of clotting in the heart has never been fully elucidated and might not necessarily be a result of the fibrillation itself, but owing to the anatomy of a part of the heart called the left atrial appendage. In some people the size and shape of this small vestigial organ, determined apparently by genetics and inheritance and perhaps affected by changes in the atrial cells, can be the cause of the blood pooling causing the increased thrombotic risk. I thought that, to cover this theoretical possibility, along with calculating the Chads2 score for stroke risk, anticoagulation was continued for life once AF had occurred.
I wouldn’t want to worry you but a friend’s husband died from a pulmonary embolism after a successful hip op, and if you really have them, I would have thought you should be on anticoagulants but you need to check that with those who really know more about it. Good luck!
I agree with the comments made by others on the forum. It is highly likely that a private appointment with a Cardiologist will resolve this issue. The GP will not prescribe without the approval from a consultant. I suspect that you will be able to resolve this issue within the NHS but it is likely to take much longer.Best wishes to you. Stay strong
As an unmedically trained person, I have only one comment 'I'm horrified, the manufacturers of the drugs even warn about the dangers of just stopping them'
My experience of busy consultants is that they don't have time to read everything especially if the test results show nothing serious. My gastro consultant sent a letter to my GP which said 1 polyp had been removed in a colonoscopy in January. Totally wrong. I had the colonoscopy but they found 2 polyps but couldn't remove them due to my being on edoxaban. I had to go back 4 weeks later for a sigmoidoscopy and they removed three polyps not 1. I rang the secretary and asked for it to be corrected, but had to do so 3 times before I got the corrected letter, which he'd just added a correction to - and I expect my GP surgery didn't spot. So now I've got to follow it up with them to check.In this day and age of easy communication why is it so difficult?
Back to your case, I suspect he glanced at your results in a big pile on his desk, thought 'they're not a big problem, she can come off the blood thinners' without properly investigating your background.
Definitely worth seeking a second opinion, if possible based on these results but you may have to go through the tests again. Or you could try appealing to this consultant asking him to review the results in the light of your background. Maybe ask your GP to write to him.
Get yourself referred to Derick Todd at Broadgreen. My wife, who had had 2 ablations, asked him if she could reduce her apixaban from 5 to 2.5. He told her absolutely not because of the stroke risk.
Tcpace thank you for a name , very useful when I speak to gp about a second opinion. I will make a note of it . I saw a consultant at Liverpool heart and chest hospital which I think is also know as Broadgreen ?
Hi Nafi - you're right. I was confusing Liverpool Heart with Liverpool Aintree. Derick Todd was particularly concerned about my wife's family history when he told her to stay on the apixaban at the dose he prescribed. Given your history, it seems bonkers to take you off anti-coagulants - did you offend him in some way!! Anyway you can get this sorted soon.
I had a feeling that I may have offended him just being there lol ... May I ask did your wife see Derick Todd privately? I have googled him and read a lot about his private clinic .
After some hassle with the NHS involving another doctor, she did see Todd privately but he then allowed her to switch to seeing him at Broadgreen as an NHS patient.
when you had the embolism were you referred to respiratory medicine?
I was diagnosed with an embolism in January and put on Apixaban. I then had my first, and so far, only, episode of AF / flutter in February. I am waiting for appointments with both respiratory medicine and cardiology. I feel, maybe, I will get two aspects and two opinions on medication going forward.
I have strong family history of heart disease and would be anxious about coming off anticoagulants. Also embolism was not a result of DVT so my understanding is the risk of another is slightly raised.
I am feeling heart disease doesn’t have the seriousness attached to it that it deserves.
No, I was in hospital for 10 days being treated with stomach injections for embolism and was told that no further treatment was needed going forward. I also had no dvt prior and was also told this made the situation a slightly higher risk . I was told that some people are higher risk of presenting clots and they considered me being one . Hence my astonishment at new consultant report.
Yes I also think you’re right to be concerned - many people who have had ablations and no sign of AFib since are still in anti-coagulation- I would want to know why especially considering family history this is seen as the right move - there may be reasons so what are they? a second opinion needed I think - these days there’s is absolutely a need to challenge decisions taken especially when they have not given you the reasoning etc - good luck with getting it sorted
Thank you yes I feel there definitely is need. In the past I would always have taken a doctors word as gospel but after being told 3 times by old gp that my embolism was nothing more than the remainder of chest infection I ask questions and trust myself far more.
You have to trust your gut and when something doesn’t make sense to you it means you’ve not been given all the info and in my view our Docs need to remember that this is also part of what they need to be doing - we need to understand the why’s and they should be informing us fully as standard. There are great medics who do this but still some that for whatever reason seem to think that explaining is not part of their role - let them know it is - I’m not having a pop at medics I’m still in awe of what they do but when it’s your life and your body you at the least need to understand what they do
I was diagnosed A F in Italy and the consultant told me there would be massive pressure to take away the medication in the Uk and boy were they right it was only when I had a Brain scan Paid for privately that showed white matter they they agreed to keep the meds ,I think it has a lot to do with costs
I am retired US physician, I don’t like using my profession in posts in this group but rather being just one of a fibbers.However,this time I have to scream loud,YOU NEED TO STAY ON ANTICOAGULANTS LIFELONG for not one but two very important reasons,you are in paroxysmal a fib and you had pulmonary embolus,extensive,both lungs.
That’s clear and undisputed indication for being anti coagulated lifelong.please seek second opinion ASAP,
I would definitely seek a second opinion. I had trouble with my meds a few years ago and GP struggled. I opted for a private referral to see a cardiologist. Saves a very long wait on NHS. I got a 45 minute consultation and it was worth the £140 it cost me. He made some alteration to my meds and I was better immediately. I have high blood pressure and PAF- I go into AF 40% of the time so I take Apixaban for life.
Great to hear that someone managed to help you. The side effects of the meds aren't always pleasant but necessary! If I have to ,I will find the money for a private consultation. Really don't fancy playing Russian Roulette....
Nafi, I wouldn't class 7% burden of Paroxysmal AF as very low - it's about 1 hr 40 mins per day. Even if you don't experience any AF symptoms, it would normally be a reason to prescribe an anticoagulant, even without any other medical issues.
In my experience the letter to your GP will contain mostly what your cardiologist discussed with you at your consultation. I would of thought that if he was stopping your anticoagulants he would of told you at the time.I'm also being treated at Liverpool
and despite being younger and probably lower on the stroke risk scale than yourself my cardiologist won't let me stop taking anticoagulants.
I think you should ring his secretary to double check.
This is exactly why I was surprised at the content of the letter. The consultant never discussed with me the possibility of stopping my anticoagulants and no specific reason is given in the letter. I had always previously been told that with my family history, my past PE and having AF that I would be taking them for life . So I have absolutely no idea why he has made this decision.
Very different to my experience. I went into hospital with acute pericarditis - I thought it was a heart attack so lucky in a way I suppose.Anyway after many checks later including ECG and ultra sound they came up with the diagnosis and the news that I have, up to then undiagnosed, AF - strange, because I have had a few ECGs and an echocardiogram about 10 years ago.
The doctor - I only saw a cardiology registrar very briefly and was in a general ward, said he would change some of my regular meds - dicoflenac(the golfers friend) for ibuprofen and my Ace inhibitor BP medication for Bisoprolol. Fair enough - but then he said I should talk to my GP about going onto Pradaxa.
So it was down to my GP, whose knowledge of the drug needed refreshing judging by his concentration on the computer screen, rather than a specialist, to help make the decision, and cardiologist had very little, if any, input.
My paternal grandfather and aunt died of strokes, my father had TIAs, my brother three TIAs and a stroke leaving him speechless, so my decision was made quite quickly.
I would be getting a second opinion here. My cardiologist always reminds how important my anti-coagulant is for my health. I have PAF so go in and out of NSR frequently. Please see someone else asap. Look after yourself. X
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