I have just received feedback from my cardiology consultant following an echo-ECG Stress test. All went well, I reached 171 bpm without my beta blockers, no abnormalities, no significant damage to my heart muscle following my heart attack 3 months ago. My resting pulse is low, blood sugar ideal, weight is normal, blood pressure is low, so I should be happy, right?
However, I would like to find an explanation for the daily chest pains which always disappear when I sleep, from the burning sensations in my upper chest, the brief but excruciating pain which periodically occurs by my sternum, and the predictable gasping for oxygen when I am emotionally stressed, something not repeated by exercise. The appearance of all these things coincide with the advent of my cardiac episode. Yet apparently my intervention was a great success.
So not finding an explanation for the various unnatural symptoms, I proposed that maybe, just maybe, one line of enquiry might be that my statin (Atorvastatin at 80 mg/day) may be producing side effects. My cholesterol measurements are all enviable and I would be interested to see if I reduced the statin concentration, relying on my Mediterranean diet which I now carefully adhere to, whether further blood tests show I still control my various measurements and whether my symptoms decline. Meaning I can avoid the known potential side effects of the statins, which might (or might not) be responsible for my inexplicable pains and difficulties handling stress. I could always jump back to the medication. Well, my consultant did not hide his scorn that I should consider avoiding the medicinal cures that are "proven to be the only things that work". Questions regarding the merits of the beta-blocker (when my heart was anyway between high 50s and low 60s), simply to try to understand what is going on with my body these days were brushed aside.
This post is not about the value of statins, or beta blockers, but about the right to be able to question the guidance, to challenge, and to use scientific method to make a personal diagnosis. I think we all deserve that. I am determined to come out of my own cardiac experience better than when I went into it, but I wonder just how many hundreds of fellow heart attack survivors are being led into blanket post-event medication or lifestyles, without feeling they have the right to have answers they can understand to questions about their continuing symptoms and what the alternatives and relative risks are. I have a strong biochemical background, to PhD level and yet I was made to feel like I should not dare to not accept my medication wholeheartedly.
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Transformerman
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Harsh, but fair is how I would describe that. I find some embrace challenge and change others run for the hills, your cardiologist is of the latter breed. I consider myself lucky, good and knowledgeable surgeon and cardiologist, willing to talk and listen to concerns. GP who has learnt as we have traveled along this path for the past 18 months and has been, as I have, willing to listen and learn.
Thanks for your comments, Mark. I am fortunate to have a good GP with whom I have always been able to talk things through. But at the end of the day, we both rely on the cardiologists for their expertise. I am indebted to my own and understand the constraints placed upon them with considerable workloads. But somehow it falls on many of us to have to research widely to ensure we give ourselves the best possible chances for a quality new life. I have yet to receive information from any medical source on various important aspects such as the significant effect on cardiovascular health from vitamin D, on "Bad cholesterol" from refined sugars, on risks of CoQ10 deficiency and nerve or muscle function from the statins etc. I ramble on, but I don't have any pragmatic suggestions...!
I share your concerns and have similar open questions to which I am still seeking answers. I think it is up to us as individuals to take control of our own health but we do rely on the experts to be open with us. I try and self manage my condition but not sure I am making the right decisions. I would prefer a partnership relationship with my GP and cardiologist but feel the system does not yet allow this. I attended a conference last year at the invitation of BHF, it’s the CCP(UK) which is the patients voice of the BCS but have yet to have any dialog with cardiologist experts which I was hoping for. If you are involved in a BHF sponsored Heart Support Group they may be aware of this years conference which is held in Manchester in June.
The bottom line is that you have the absolute right to take the medication recommended or not. Equally you can try the dietary route if that is what you want to do. You have obviously done your research so you will know all the pros and cons of the medicines you take. The choice is yours as to what you do with that information. As someone who worked in the pharma industry for over 40 years, I am going to sing the praises of all the the clinically tested products over untested natural ones, but that does not mean I do not see merit in other solutions and I will also seek to reduce my medication in due course (bit too soon for me yet). Suggestion time: book a private appointment with your consultant (£200 or so). You may not hear answers you want to hear but at least you will get time to have the conversation.
Thanks for your comments, Steve. Your suggestion is sound, though I might well be shopping around. Hope all goes well as can be with your own recuperation/rehabilitation.
Hi Trsnsformernan ....... I too have challenged the medications the consultants wish me to take. Over the years that I have had my condition I cannot count how many times different doctors have suggested Beta blockers are the way forwards. Now you may say if all are saying this.... and they are the professionals.. .. perhaps I am the one in the wrong for not accepting them.
However I know my own body.... having read up on Beta blockers and why they are required.... my particular scenario does not fit that criteria...
And could in fact make me worse. Also luckily for me early on in my prognosis a senior consultant had taken me off the Beta blockers and had explained exactly why they ate not good for me.
So now each time they are suggested I have a discussion with the doctors... some haven't liked me challenging them ...And I do think that they blanket issue medication with us hearties. Their view is belt and braces... and I get that too. However after discussing why I won't take them the majority of doctors agree there is a slight risk of less protection for my heart .. but possibly a better quality of life and they could cause me extra damage too.
I have also started to eat raw honey as I have been told of its qualities in protecting the heart... and in some instances had helped repair the heart. Sometimes the doctors have scoffed or sneered at this. Whilst others have embraced it. It can't hurt and is healthy and bees are widely known for helping on many fronts.... so why scoff ... i think they are someyimes so entranced in medication being the only way... that they do get blinkered.
To be fair they also cannot tell us not to take medication which could then cause any detriment to our health.veberyone is worried about being sued.
However the final choice is yours. You may want to discuss that although you understand their reservations that you would like to try to reduce your status based on your diet intake to see if this could be controlled this way. At the end of the day the choice is yours.... however you also have to accept any risks too.
Thank you, Hearlady1. From your post, and Bob's, I sense I am not alone. You make some good points and yes, it's going to be difficult because of litigation for many a medic to say anything other than what perceived opinion is, though having said that, peer-reviewed published scientific literature is full of evidence-based alternative positions on just about everything concerning cardiovascular health and diet. If we don't read widely we can easily accept a possibly flawed conclusion (dietary fat sources being a good example). When it comes to the benefits of natural foods, well the pharmaceutical giants aren't going to make anything out of those, so they won't be influencing anyone about them.....
Ask ur cardiologist why y are getting chest pains and no problems asking questions but listen to them they do kno wat they are talking about. They have trained.
Thanks for your advice, gal4God. It is exactly the advice that was given to me by my cardiologist, who also did not want to explain what was written on my discharge letter about my condition because I was "trying to understand something" that would be out of my comprehension. It might be a lot easier for me to accept without question what a trained cardiologist advises for my heart, than what a trained car mechanic advises for my car. But I always struggled with unquestioning obedience.
My hubby had a heart attack in 1999 and he was rushed to hospital and had a stent put in. They told him he would be fine. 3 months later he started having chest pains so we headed back to the cardio doc. They put him through ALL the testing and once again said no worries. Three months later the pain was still there and we went for another visit. Our cardio doc said nothing was wrong but if we insisted he could do a cath. We decided to do that so we could rest assured it wasn’t all in our head.
We scheduled the procedure and headed to hospital. He went into surgery at 8:00AM and at 10:0AM they called me in and the doc tells me “he’s a ticking time bomb he needs by-pass surgery” I asked when can we schedule (my hubby was just coming out of the sedation) and they said 12 noon. My husband opened his eyes and I told him you need by-pass surgery right now. He rolled his eyes and told me and the doc to get it done right.
We learned not all testing tells our story. Only an angiogram can do that - the docs tell you it has its risks but in my husbands case for some reason all the testing doesn’t show the whole picture.
Thank you very much for sharing your story, "not2worry". It emphasises the need to follow up about things which we are not convinced are right and which are important, and you motivate me to persevere with getting to the source of my unexplained pains. I hope I am right to assume that your husband pulled through his by-pass and ordeal well enough. Thanks again for taking the time to have made your comment and best wishes to you.
Yes-my hubby had the by-pass in 1999 at age 65 and it’s going on 20 years!! Never underestimate your intuition and how you are feeling.
In 20 years the medical arena has changed so tremendously. We are living in a time where our lives can be longer and better.
My husband has had a couple of stents but in since his surgery. Follow your cardiologist suggestions, give your med a chance to kick in and become part of your lifestyle. Don’t look at the meds as a slap in the face but rather a vitamin for your heart. A positive attitude is part of that vitamin regime.
Also see if you can get a younger cardio doc who has been practice for at least 5 years. While experience is important knowing the newer advancements in heart health is critical.
I am too questioning if long term use of all my meds is necessary- I am booked to see a cardiologist on Monday actually, so have a plethora of questions to fire at him ( get my money’s worth!). He was actually the Dr who fitted the 5 stents after my MI in August last year (I was 42 at the time). Looking forward to shaking his hand as I was in such a state of shock/denial the last time I am not sure if I properly thanked him.
I am also looking into the monitoring side of things- possibly paying for a CTCA and would like to get an ECG stress test. I was ‘fit’ before the MI, with a heart rate of early to mid 50’s I am now mid forties with bb’s and about 43 when sleeping. I am just not convinced at the moment that can be good for ensuring everywhere gets a good blood supply , especially as I now have (or did have a few months back) a slightly below normal LVEF. I am back to doing some running on treadmill (5k in 25 mins- not Mo Farah fast but I am happy with that) and exercise bike with dumbbells for resistance work. So let’s see what the consultant says... I think we all know the answer, but it is good to hear others are also reluctant to just take all the meds and are also concerned about the side effects. For me, I am still taking the Ticagrelor and aspirin- so I have some mild erosion of stomach lining controlled by Rinatidine - so there are a lot of drugs going on - so isolating a side effect to a specific drug is difficult at the moment.
I guess it is all about wanting to wrestle back some control; I changed to mainly plant based diet with a bit of fish, so with the exercise- I would just now like to think that i can halt or even slightly reverse progression of the disease- are the drugs really all helping do this? I am not convinced yet, but also accept that although I have also done a lot of research - it’s hardly the same as years of experience and training in cardiology!.
Thanks David, for sharing your experience and concerns. I believe its right to question. We might not have anything comparable in terms of specialised background/training, but we are able to focus on our own situation, which will often have its own specific differences. Only we are able to focus so heavily on ourselves. Together with the cardiologists and GPs we have a good chance to customise and optimise our medication. It just ain't easy.
I was beginning to think it was just me! My husband was admitted to hospital in Aruba a few weeks ago with chest pain. It was the first problem he had ever had and was absolutely fine afterwards. The Dr, however, gave him 6 lots of tablets (including a beta blocker and statins) and just told him to take them. I am afraid he doesn't ask questions, but I do!! I went out to join him in Aruba and we went to see the Dr before flying home. He wasn't open to any questions - just basically 'I am the Dr. Do what I say!'. Thankfully we are back in the UK and our GP, having had a long chat, reduced his tablets to 3 prior to seeing the cardiologist who then added one he wanted taken until the angiogram is done. My thing is that no 2 people are exactly the same, and neither are their symptoms or the causes of those symptoms. I can't believe there is a 'one fix suits all'. Nobody seems willing to give other ideas a try, just go straight to the tablets and not giving any chance to lifestyle changes. Also once you are on these tablets it seems almost impossible to get taken off them!! Good luck Transformerman. I hope your questions get answered and that you are allowed to try other routes to maintaining good health.
Thanks for your comments, Duckylady. We're definitely on the same page! Best wishes for the successful resolution of your husband's chest pains and the pending angiogram.
It is absolutely okay to challenge politely and with respect your cardiologist. If they don't respond well it reflects more on them as a practitioner than you.
I have a very unusual difficult to diagnose and treat condition which many Cardiologists have very little knowledge about. I am an expert by experience and understand my condition better than most Cardiologists......even they acknowledge this.
I do my own literature search, send recently published research articles to my Cardiologist. I email him before my clinic visits to say what I would like to discuss.
I have a written Admission Plan, I always write a letter of thanks when I am cared for well however I will challenge a Cardiologist or a nurse who fails to read or follow my plan.
The NHS Constitution states that we all have the right to be treated with respect and dignity.
All healthcare professionals are expected to work in equal partnership with their patients. Unfortunately not all of them are aware that this is actually written in the GMC Guide to good practice and NMC standards of nursing practice.
So yes be your own advocate you will with time understand your body best and know how the drugs effect you.
Thanks for that, Milkfairy. It's motivational to read that there are several of us out there who see that we can have an important role to play in our treatment. We certainly have more time than anyone else to look at our individual situations, and to try to understand what we are doing and why. Best wishes with your condition and treatment.
I am so glad to stumble upon this thread, like many here I am always questioning/discussing my conditions with cardiologist and he always explains why I need to take certain medication and he also goes at length to explain the benefits. I must admit that I am not always convinced with his reasoning but equally do acknowledge that he is the expert in this field and my health/wellbeing is his utmost priority.
I totally agree that no two people are the same and neither their symptoms or the causes of those symptoms. If anyone question that than I suggest they read my thread below.
I tend to request a low dosage when we start a new medication and with agreed time frame for the trial period, unsure its an option open for all.
I recently started BBs, I was not convinced that I had too but he explained the reason and we agreed an evaluation period. I agreed to take the BBs for a trail period (my resting HR was early to mid 50s). I am really looking forward to my next meeting with the cardiologist :-).
Hi mandm65, I remember reading and being very interested in the thread which you attached, partly because I too have been very much into outdoor activities and sports for most of my life. One thing I clearly didn't pay enough attention to was my diet. That was largely due to naivety on the one hand and some sort of arrogance on the other - along the lines of I can eat anything I want because I am so active and don't get overweight. Crazy now I get the benefit of time and hindsight.
I don't think the option you mention is open for all. I had mentioned about my statin medication earlier. I don't want to turn this thread into a pros and cons debate about that, as there are other threads doing that very well. But I never did get the discussion nor the opportunity to change my diet and lifestyle, as stated on the accompanying factsheets, as an alternative to the statin. So I have gone along with this as perhaps the angiogram persuaded my cardiologist that the benefits outweighed the potential side effects. However, when I learn that I am in great condition (relatively) and my remaining pains are not cardiac, I start to question more earnestly why I am on my dose and not given a chance to control my lipids naturally. I would love to completely believe that everything our medical experts prescribe for us is for the best and as a result of fully qualified medical expertise, and I reckon that in by far the majority of cases that is the sincere reality. But I also know that the manufacturers of these medicines and the sponsors, designers and publicists of their clinical reviews have methods which can influence, even subconsciously, the prescribers of those same medicines. But I don't really want to get into that here. As you and others rightly say, no two people are exactly the same and we are talking about much greater numbers of people than that being treated effectively the same.
Best regards and good luck with your future personal targets!
Thanks for your response Transformerman, i understand where you coming from and i also have some doubts about prescribed medicine and all the palaver behind it. You are absolutely right to question why we are not given the option to control our conditions naturally (where possible) but most of the times we are not. Just to compliment this statement i was diagnosed type 2 diabetes two years ago and the GP immediately prescribed the metformin. I was not willing to take the medication so discussed the option of delaying the meds for 6 months. Two years down the line i am still med free and manging the condition with diet/exercise. I do wonder how many of us actually do discuss the options of manging the conditions naturally with our GPs?
Hi Transformerman
Having read your post I see someone has trust issues and difficulty in accepting that we do not always have control of our destiny. If you have no faith in your cardiologist and the prescribed treatment then ask for a second opinion or referral to another cardiologist which is a right. I think we are all aware of the side effects of the drugs we have to take and if we cannot accept that this is the best treatment option available at the moment we have the option of not taking the medication and cardiologist`s advice and accepting the consequences.
I find the inference that there are hundreds of heart attack survivors who are unable to think for themselves and are happy to be lead like lemmings into blanket treatment plans to be rather arrogant and condescending.
We do all have the right to question our treatment but I think it is far more beneficial to spend more time on our recovery rather than wasting time on the benefits and side effects of prescribed drugs.
I hope that you can find a cardiologist that you can trust and develop a coherent treatment plan with, and then this may aid you to a speedy recovery.
Hi Steve, Thanks for your post and comments. I'm sorry you interpreted my post in the way that you did, but that's often a problem with mails versus conversations. My post was not intended to be a platform to discuss medication per se, nor was it about mistrust, though it was about the need to be able to discuss the basis for decisions and conclusions which were reached, to understand what can be done. However you were right in interpreting my difficulty in accepting that I have no control or potential positive influence over my destiny.
Thanks for your reply, I am sorry if I sounded overtly critical of your post it was not meant that way but unfortunately there will be no speedy recovery for me and I sometimes find it difficult to understand why people waste time worrying about things they have no control over rather than making the most of each day. I know I have some views that others find difficult to understand as in some of my previous posts i.e. DNR and Dignitas. I am in a position and mindset that I have lived longer than expected and if I wake up in the morning then that day is another bonus.
Hi Steve, No problem at all. I get the feeling that most of us who have suffered cardiac failures and the like, have a battle in our heads to come to terms with what has happened and we'll all handle it differently, and who is to say what's right? The last thing I do before falling asleep is to think of what special things happened that day and be grateful for it. I truly am. But I want more of those days if I can.
Hi Transformerman. I have recently had a cardiac arrest and as a result an ICD fitted. I left hospital with some medication that I would "be on for the rest of my life".I am still looking at the information on these drugs. However some is for cholesterol (which i didn't have a problem with.) and some is for blood pressure.(again no previous issues)
So I've been given drugs for two problems, but no advice on exercise or diet. This does seem a bit strange to me. Not going to change anything just yet but will want to discuss it with my GP when I have to go for repeat prescription.
Not the same condition as you but yeah i was also sheocked when i was given meds for cholesterol and blood pressure, thats despite me being very active and having no issue with my cholesterol and blood pressure. Naturaly the meds dropped my cholesterol from 5.9 to 3.5 but unsure what affect, if any, blood pressure meds are having as it was normnal before!
Thanks very much for your comment. I too detect that there are many of us out there seeking reasons for decisions reached. Like you, I was prescribed a statin at a strong dose without any explanation of why that was chosen (to be fair I probably wouldn't have been as prepared at the time, as I am now, to have that discussion) and when speaking to my Cardiologist at the time of starting this thread, I was not entertained the time to discuss the matter. But I have concerns about statins, for example. Today in the review I had with my GP we discussed my symptoms, possible explanations, and commenced a plan which begins with halving my statin dose and monitoring what happens to my various cholesterol values, and other parameters possibly affected by the statins, such as my bilirubin levels going out of norm along with some other liver enzymes which are markers. Repeating the blood tests will see if there are positive, neutral or negative effects and then we move to the next thing on the plan. Maybe I end up going back to the original prescription with full understanding or maybe it leads to a different strategy, who knows.
Hi Transformerman I absolutely agree that it’s about a partnership. I question everything and work with my GP and cardiologist to decide on the options available and what is best for me. I constantly have my medication adjusted as and when I needed. You may want to consider participating in a clinical trial I did this and was monitored much more frequently as well as being part of a future treatment which hopefully will help others. The UK clinical trials gateway gives details of all trials in your area. Also if you want to see the most current published research NIHR Dissemination centre will have that. Of course there’s also NICE guidelines as well for some extra reading!! Apologies if you know all of this already.
You can always ask for a referral to another cardiologist anywhere in the country if you wished but sometimes it’s worth persevering to ‘educate ‘ the doc in the ways of partnership working!
Hope this is useful. Sorry again if you know it already. Stay strong. Take care. Zena
Hi Zena, thanks for your comments. I'll have a little think about participation in a clinical trial as I hadn't thought of the spin-off benefit of more frequent specialist contact! Do you get a chance to decline trials for which you wouldn't want to be the one not getting the placebo in a double-blind trial..?!
Thanks again for your interesting comments, and best wishes for your own progress.
Hi. As to your question about declining trials you can stop at anytime. Of course you won’t know if you have the placebo. But they check with you at each stage if you still want to participate. There is no pressure at all and you can leave at anytime. Worth thinking about. Take care. Zena
And I was literally fobbed off just yesterday and once again sent home even after I had asked very direct questions
They wouldn't answer my fears until they finished clinic...so I sat from 4an until 7pm to speak to a consultant who happened to be the same doctor that sent me home 2months prior saying I was fine..
A few weeks later I was found to have a blockage in my LAD......
Hi Rob, Thanks for sharing your experience and I'm sorry about how things went. Your story also backs up one of my potential concerns regarding the decision-making process during angioplasty. Inserting stents carries some risks of contraindication, and even fatality in rarer cased. Nobody wants that, but also nobody (hospital nor Cardiologist) wants the statistic on their record either. So in a not unusual scenario, an angiogram can show several different artery locations with varying amounts of atheroma. The severe ones have to be dealt with, but somewhere below that there is a decision to be made, risk of issue with further stent insertions versus avoidance of future intervention by doing it versus risk management via medication and lifestyle/diet changes. If the medications and lifestyle changes don't succeed, with a later repeat heart-attack due to blockage at a different site, then stenting could be done then. The latter of course means that, depending upon speed of action etc, there might be some damage to the heart which could have been avoided had a further stent been inserted earlier. But its a tricky decision and I can understand why there may be a decision not to stent and avoid a problem in the theatre. But having said that, it is believed more likely that a moderate atheroma would lead to clotting and heart attack than a more severe older atheroma which just won't cause problems beyond reducing the bloodflow. Now where it becomes a concern for me, is when a stented patient endures symptoms which are put down to anxiety or vague musculo-skeletal or nutritional deficiencies whenever the patient follows up on the symptoms. Repeated trips to A&E with nothing more to show for everyones trouble than some band-aids where the blood samples were taken, with stabbing pains etc still persisting and recurring, risks that when the patient does have an attack with relative mild symptoms, they are dismissed as a further futile reason to call the medics, and prompt necessary intervention is not given. This is something which must happen from time to time.
Meanwhile, I continue with my own pressing demands for answers and explanations. Sometimes, these have already proved beneficial. I understand the restraints on our Health Service and Cardiologist time, and recognise their tremendous work, but we are the only ones, quite often, who really treat our own cases as individual cases, and we all ain't the same.
Good luck, Rob, and I hope you succeed to avoid further issues with your LAD.
Thank god you’re recovering well. From my own experience , I’ve seen 2 consultants and one surgeon. And everyone gave a different opinion and questioned the other drs prescriptions.
But then I’m working abroad where drs are more concerned with their charges and fees
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