Tissue Mitral Valve Replacement 1yr o... - British Heart Fou...

British Heart Foundation
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Tissue Mitral Valve Replacement 1yr on - and coming OFF meds to use Alternative Integrated Supplements...increase pulse & can't gain weight!

1 - I've been fairly quiet on here, although did contribute a little some months back. However, my resting heart rate (over night, during sleep) has risen from 59-65 to 70-75 over the last month or so.

I had an echocardiogram a couple of months back, which showed my ejection fraction lower than before I had my op (mitral valve prolapse: 40% vs the current 29%) BUT my private GP says that you can't base much on ejection fraction alone, as it's multi-factorial. I would agree, based on the fact that I am well able to play badminton and do HIIT exercise on my cycle (though limited to 130bpm so I don't go back into Atrial Fibrillation (AFib).

I'm following the advice of my integrated medicine doctor, which is a Paleo-Ketogenic (PK) diet, who in turn bases her treatment on Dr Stephen Sinatra, who has a 95% success rate in raising ejection fraction using what he calls 'the awesome foursome': CoQ10 Ubiquinol, L-carnitine, D-ribose and magnesium. The COMBINATION of these 4 enables the body - and especially the heart - to raise the energy available to more effectively pump the blood. This is way preferable to prescription drugs and all the side effects of them, in both the short and long term. ACE inhibitors and Beta blockers are NOT suitable, IMO (and those folks who are anti big Pharma, as I am, as I know there ARE better ways to deal with bodily conditions. But my resting heart rate over the last month has increased without any clear indications as to why. Any ideas? (I don't snack late at night; I wear blue-light blockers and use an 'earthed' bed sheet, as well as being 'earthed' at my computer, and eat a very healthy diet (high grade saturated fat, which is what ketogenic is all about, NOT carbs nor especially glucose (sugar).

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2 - Before my op I'd already lost 10kg, and was at my perfect/ideal weight: 85kg vs my former 95kg (but I'm 6' 4", so never been overweight). But SINCE my heart surgery (minimally invasive/keyhole) I've lost yet more weight, and down to 77kg (75kg at one point, which is bordering underweight for my height), and I CAN'T seem to put any weight on now!

My blood pressure is 108-110/77-80, and the ONLY prescription drug I'm currently on, but slowly weaning off, is Ramipril, at a minimal 1.25mg dose. I can safely reduce the amount I'm taking, as my blood pressure is in no way high or the unhealthy range.

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3 - I'm also a 59-year-old guy and otherwise very fit for my age - BUT can't now cycle like I used to before my op as I puff more easily. CAN I ever improve on this, given that I must keep my heart rate below a mere 130bpm?

Thank you everyone in advance for this. Much appreciated :-))

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Thanks for your interesting post. Most people would be envious of your figures: Still generally low resting heart rate, low blood pressure, weight within recommended range, and a good training heart rate zone. Personally, I would worry about putting as much strain on your body than before your heart problems. As you are careful about your diet, I wonder if the weight loss is muscle rather than fat. I guess that HIIT training improves muscle tone but not muscle mass. Have you seen these machines that work out your muscle/fat percentages. I'm sceptical about them so I would be interested in your opinion.

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Thank you for your quick reply, zxcvvb.

I suppose some might be envious of my figures, although I acknowledge and am grateful for . not only having the minimally invasive procedure, but how quickly I recovered. But like I said, I'm in an otherwise good fitness state, and look younger than I actually am. So yes, I'm blessed in those ways, but always looking to improve as MUCH as possible, as health (healthy lifestyle and of course diet) is central to everything.

However, my resting heart rate is higher than it was (I measure this during my sleeping hours with my 'Oura' ring, which also measure the amount of deep sleep as well as REM, both of which are important for good rest and rejuvenation). So I am trying to get to the 'why' of the quite sudden elevated heart rate. My heart rate used to be VERY low, and something like 45bpm, which is usually indicative of a strong heart etc.

Anyway, you raise a good point in relation to whether it's muscle mass or fat. It's both!

When I lay on my back, my stomach drops into a cave-like shape. When I lay on my side, my leg muscles look hollow. The tops of my arms are almost painfully thin, and my butt cheeks dropped rather. I look pretty dreadful, IMO. Even my wife was shocked to see me like this. ..........Though one can't expect to be the the exact same they were after this major surgery, but at the same time it's worrying and perfectly understandable I think.

I am taking a testosterone supplement, recommended by my doctor, to address muscle mass, but as yet seems to have had no effect at all.

I would also like to say that I WAS doing HIIT training, but now not, because my heart rate would go over the recommended 130bpm, raising the chance of going back into AFib (and I can 'feel' that I am in AFib every so often anyway, but far less I feel than before). HOWEVER one COULD argue that because I'm going in an out of AFib anyway, that I could go back to HIIT exercising, as it's so good for strengthening the heart and causing/improving mitochondrial function and regeneration etc.

And your mention of the machines that work with muscle mass AND fat, I can indeed comment on (if you're talking vibration plate?) as we have one. I did a bit or research before buying it as I wanted to know if the larger machines, more powerful offered better results, and if the margins were worth paying for. I eventually saw what I considered to be a worthy machine (a 'Mirafit') which was just over £100. It was without doubt the best value one in terms of power versus performance ratio. The wattage I feel is sufficient, for the lower powered ones just wouldn't be enough and likely to overheat or fail sooner (IMO). But spending £1000s is ridiculous, as they don't offer anything of significance over the much smaller vibration plate (I'm talking large machines, with tall pillar and digital readout, which can't be easily stored out of sight etc).

Anyway, the results (when I began) were indeed impressive: I lost 1kg in less than a week, and more thereafter, even though nothing in my diet or exercise regime changed. They also help create 'EZ' water (or 'living/structured) within the body's cells, if you're familiar with it? But now that I've lost so much weight, I'm loathed to use the vibration plate, as I don't want to lose any more weight, as I think is clear.

HOWEVER, it could possibly be the case that as I'm already down to 10% body fat (I have some Japanese 'Tanita' bathroom scales that shows not just weight, but body fat and water content too) that by default I WON'T really lose any more and that in fact it would help build muscle. So I'm torn now. I may still go ahead and try, as I can always stop if I start losing more weight in lieu of muscle mass building.

So thank you for raising the muscle mass issue, as I'm already teetering as to whether to use that vibration plate again, and I'm now seriously thinking I maybe don't have anything to lose by giving it a try (albeit losing a little more weight of course, which I'm NOT wanting to happen).

Oh and BTW, I said the 'only' medication I'm on is Ramipril, but forgot to add that I'm also on an anti-coagulant as I suffered double vision on 3 occasions for a few seconds, and the right side of my face dropped. So I was put on Warfarin (rat poison), but as it conflicted with my beloved supplements, I eventually got the doctors to change it over to an alternative (Dabigatran, which is the only alternative anticoagulant that can be 'reversed' if there is a problem with bleeding etc, as there is a reversal agent available in the UK for this, but only this version). There are possible side effects (acid reflux is one of them) and it did cause me stomach pain initially, but not any longer, thankfully.

So this is why I have to be taking an anticoagulant, for there is a risk of stroke from lack of circulation due to AFib. It works on one 'part' of the blood and not broad-scale as it were. There is also 50% LESS chance of a brain haemorrhage with this drug as opposed to Warfarin, interestingly (York Cardiologist on YouTube does a fair bit on this topic, and my doctor confirmed the reduced risk of brain haemorrhage too).

Sorry for long reply.......

All the best!

Ian

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I'm sorry I didn't mean machines that work on muscle and fat (as in your vibration plates) but machines (like scales) that work out the percentage of one over the other. I use one at my gym (a branch of The Gym which have branches all over the place) but some supermarkets and chemists have a simpler version (albeit costing about £5k). I'll send you details if you are interested. I expect you would only want to use it once couple of months so at £1 a time it's much cheaper than buying a home machine which is not likely to be a useful.

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Thanks for coming back to me, but as I have said, our 'Tanita' bathroom scales give fat and water content, though no muscle mass as such. It looks as if you MIGHT be talking about this type? Or maybe BMI?

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Are you testosterone deficient? I ask this as you seem to be possible side effect averse. I am on testosterone replacement therapy because of a pituitary problem. One of the major side effects is that the testes reduce their production of testosterone and your testicles reduce in size as they have no work to do. There are surely more natural ways to increase muscle mass??

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Hi Osidge

Thanks for your reply.

I don't know if I am testosterone deficient, but as per my reply to 'zxcvvb' above, I am on a testosterone supplement now, yes. It doesn't seem to have made any difference (yet!). But fingers crossed it will do in time. I've been on them for a couple of weeks now, so maybe expecting miracles, or a slow recovery at any rate.

The supplement I'm on is 'bovine' derived, so I'm guessing bull's sperm! Sounds horrible, but I have to try it. So far so good, but time will tell, as they say. Fingers crossed. But yes, you're the 3rd person to suggest testosterone supplement (the other 2 were doctors). I can't say I notice any 'shrinking' though, but I guess because I may NOT be deficient in testosterone.

I also take a regular dose of organic maca root (which helps with libido, apparently), which I love the taste of, in my coconut-based 'yoghurt', together with other things like Himalayan salt, pepper, a smidgen of erythritol, cinnamon powder & organic ginger powder (which may affect my blood viscosity, but as it's combined with food, hopefully it's metabolised in a way as to minimally affect my blood.

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Yes, a bit like your 'Tanita' bathroom scales but a lot more fun. have a look at miefitquest.com

And make sure you tell your doctor first because it is competitive.

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Thanks for the info on the Miefit Quest machine. Interesting. Not seen one of those before - and yes, way more comprehensive than my Mirafit vibration plate; though it is still pretty useful and worthwhile having - especially cost wise and compactness.

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Hi Ian

The issue with testosterone replacement is that whatever testosterone the testes make they stop when they think the body does not need it. If they stop producing it they shrink - over time. Having low natural testosterone is not an issue.

“Testosterone replacement therapy (TRT). Some men undergoing TRT experience testicular atrophy. This is because TRT can stop the production of gonadotropin-releasing hormone (GnRH). Without GnRH, the pituitary gland stops making luteinizing hormone (LH). Without LH, the testicles stop secreting testosterone, leading to smaller testicles.

Anabolic steroid or estrogen use. Taking anabolic steroids or estrogen supplements can cause the same effect on hormones as TRT”

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Thank you for your suggestions, Osidge. I'm not so well versed on things testosterone, not having looked into it until now (so many other ongoing issues to do with everyday life, and also communicating with 4 doctors, kind of playing one off against another, without being too obvious about it; plus running our business and taking care of our young family etc).

It's hard work getting one's head around the detail, as it 'seems' they are listing, or citing, things in reverse order; so the result of one affects another, but you need to sort the latter out before the former etc. But I guess it's difficult writing in a manner as to adequately convey the detail, in a manner that's easily digested.

I have been recommended 'Raw Orchic' by my doctor, and have purchased a couple of bottles. I HOPE this addresses matters, but we shall see.

I just hope that supplementing with testosterone doesn't 'result' in the shrinkage of the testes. But that IF it did, that it'd not be overly noticeable. Fingers crossed, eh?

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'Integrative medicine' is supposed to be what its name suggests - integrating alternative remedies with conventional medicine. While you do take a conventional anti-coagulant you seem to have decided to ditch conventional medicine for heart failure (which has gone through randomised controlled trials), for untested supplements.

During this experiment your ejection fraction has dropped from 40% to 29% - a substantial drop, and your cardiomyopathy is now rated severe.

You want to abandon your tiny dose of ramipril - but ACE inhibitors are immensely important in heart failure. This has nothing to do with their action on blood pressure but because they inhibit the renin- angiotensin system activated in heart failure. Beta-blockers are also hugely important in heart failure as they prevent the very damaging sympathetic activation in heart failure. None of your supplements do this. Dropping your ramipril is far from safe.

I urge you to consider at least going back to see a conventional NHS consultant in heart failure and taking his advice. You could still carry on with your supplements, but at least take the tried and tested drugs as well. It's good you feel well at present and able to exercise, but heart failure is a very serious and life-threatening illness which needs medical treatment.

Ketogenic diets are weight loss diets. If you don't want to lose more weight change to a non-ketogenic Mediterranean diet.

A higher resting heart rate is not good in heart failure. Beta-blockers help with this.

Obviously it is your life you are gambling with, but just consider that the British Cardiovascular Society, ACC, AHA, NHS and BHF and the huge amount of medical research and evidence re heart failure and its treatment might be right.

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Hi Fortepiano (and apologies for the long reply),

Thank you for coming back to me on this, and I'd like to address a few points you make:

Yes, 'integrative' medicine is a blend, as you rightly observe; and as you point out, I am taking a 'conventional' drug, anticoagulant (Dabigatran), for the reasons given in an earlier post of mine (although may have been to someone else's posts, when talking anti-coagulants).

My decision to drop conventional meds in favour of the ones that have 'gone through randomised controlled trials', wasn't taken lightly and without thought. I have a strong, justified anti-drug stance, which is why I end up doing a fair bit of my own research AND to combine it with advice from doctors, both conventional as well as alternative/integrative. It's this that led me to alternative (keyhole) surgery and to agree to follow the usual protocol for the 3-months after. This I did, but dues to complications, was put on anti-coagulants, as my heart beats both ectopically as well as arrhythmia, despite ablation treatment during surgery to help nudge my heart into a better rhythm.

Now that I'm taking magnesium (as my blood tests indicated that I was deficient in this - as are a high percentage of the population in fact) because this alone can CAUSE arrhythmia, though it's not clear if it did in my case. We shall never know for sure.

But yes, integrative medicine is indeed a blend of conventional and alternative, rather obviously; but the whole thinking and drive behind my decision to go for non-mainstream treatment is one of both health AND suspicion of conventional medicine.

It's far preferable, to me, to 'ditch' conventional medicine if an alternative, less body-stressing, more effective treatment is available. I'm not one to swallow the 'controlled randomised trials' claims, as I know for a fact that it's all big Pharma driven, and that a LOT of adverse effects are down-played or buried. But nature, and in particular 'plants' have amazing healing abilities ('food is medicine'?), often more powerful than man-made drugs that come with a plethora of adverse side effects. Of course as there is no profit in 'natural' remedies, you can understand why the pharmaceuticals won't pay to 'test' them. They have NO interest in doing so, and would rather treat with powerful drugs, that in the long term either have nasty side effects and/or have a VESTED interest in promoting. What other industry is allowed or permitted to self-test and give the results, while often burying negative effects? One wonder how many on this site, and many others too, have 'insiders' posing as members of the public in order to scare people into trusting conventional treatment/medicine, and to KEEP the status quo!

Furthermore, the supplements I'm taking HAVE been 'tested' and have very positive results indeed, as I have indicated. Refer to the publications I've already mentioned. He's treated literally thousands patients and many, many testimonials, if you can to look.

I take the view that wherever POSSIBLE take alternative supplements in lieu of prescription drugs! Any and virtually ALL of them stress the body. Then you end up taking more to counteract others, and then further complications, and yet MORE drugs to offset those; and so it goes on!

Also my EF has only been 'interpreted' as having dropped, even though I posed the question (as I always do! Someone, somewhere might raise an issue or aspect I haven't come across or heard of. I'm not too proud to seek advice, and will always reflect accordingly, but always treat advice to do with conventional medicine, with great suspicion. Far too many people have been hoodwinked and taken in by it and the scare stories to boot).

Little did I know that from a very young age (my teens) I HAD arrhythmia, but didn't know that it was that, and that as people aren't machines, that we couldn't HAVE a heart that has clockwork-like function, and that therefore my irregular beats was 'normal'. It was ONLY when I almost fainted immediately after a game of badminton, and had a pain in the heart area, that I knew something was wrong. But been on numerous cycle-camping holidays without the slightest indication that I had a prolapsed mitral valve - which could ALSO be the 'cause' of the arrhythmia (not just magnesium deficiency).

Beta blockers and Ace inhibitors may well target certain functions, independent of blood pressure, but this does not in any way mean that my current supplements don't adequately deal with my problem; and as I have also said, the EF is 'multi-factorial'.

It's not JUST my decision to ditch beta blockers and ace inhibitors, but on the advice of my doctor (who has MANY years been in the NHS!) but HAD to branch out in order to treat patients more appropriately as under the usual doctor protocols this would not be possible - and we all know who 'educate' doctors? Err...huumm, the drug companies! THEY pull the strings, putting undue and unreasonable pressure on doctors who subsequently have their arms tied - how they like it! (the drug companies that is, not the doctors!)

Finally, ketogenic diets are not 'only' for weight loss, but make for a healthier diet in general. But as I have said, I'm on PK (paleo-ketogenic) which is even more restrictive. I WILL be in trouble if I go to a mediterranean diet, as although healthier than most, still isn't the holy grail! They eat much wheat and fruit, including gluten and dairy! None of these are ideal, especially as wheat has been slowly falling in quality ever since man started producing ever more productive, disease-resistant varieties, and now we have wheat that is far less nutritious than the older varieties were, and MUCH more gluten to boot).

I don't take steroid or anabolic supplements, only the raw orchic, which for now it PURELY to see if it addresses my weight issue. As of yet, it hasn't; but it's only been a couple of weeks. I shall finish both bottles and if no weight gain, then I shall stop taking them. It's temporary and an experiment, as 2 doctors have recommended I try - and both I respect, as I do your good self for coming back to me :-))

Just remember that the widespread medical advice from both doctors AND healthcare professional in this country as well as across the pond, was 'avoid saturated fats' and 'eat margarine', and 'avoid salt' etc, ALL BS (pardon my French). 'Quality' saturated fats are good for us. Grass-fed butter is good and healthy; margarine is bad, very bad (a side note: it was developed to fatten turkeys, but they wouldn't eat it! ....Neither would cockroaches! So all the R&D money wasted led them to ask the question as what they could DO with it? So they added yellow colouring and sold it to humans! And you expect me to trust the medical profession without question? All the vaccines too, and how corrupted that was, and still is!).

And as far as salt goes, SURE 'table' salt IS bad, but Himalayan isn't; and in fact many people need more salt than they currently ingest when eating. It's crucial for hydration and assimilation, and provides electrolytes etc.

The medical profession and drugs have their place, when dealing with emergencies and life-saving treatment. But in the long term, they sadly fail in many instances, sorry to have to say.

But thank you so much for coming back to me. I hope I haven't spoken too sternly, or you take it negatively. I'm just asking questions hoping to discover something I don't know, or aren't aware of, that might be able to help. So this is why a 'combination' of these supplements (and ONE prescription drug, for ACE inhibitors and BETA blockers have very bad side effects in the longer term!) AND my PK diet are the road to health.

Oh and my RHR (Resting Heart Rate) has now, thankfully dropped to near what it was before (59 and 60bpm last night and the night before). That's much better news and I feel relieved of course.

Many thanks!

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I found your posts very sad but not surprising - I didn't think my post would do any good but I felt I couldn't just stand by given the severity of your ejection fraction, particularly if anyone was tempted to follow your example. Obviously it's your decision not to take the necessary drugs, but please think twice before trying to persuade others - it's really not appropriate on a BHF site.

I'm always surprised that those who criticise 'big pharma' don't consider the huge amounts of money involved in the alternative medicine and supplement industry! Sinatra has a very lucrative business with his books and expensive supplements shop. I certainly don't agree with your many conspiracy theories, including the one that this forum has ' insiders' posting. But conspiracy theorists see conspiracies everywhere.

You trusted your surgeon with your operation, it's a terrible shame you don't trust him medically. My husband had very severe heart failure for many years - he would not be alive today if it was not for the dedicated academic consultants who helped him, all experts in heart failure and its medications, who were certainly not in the pockets of the drug companies.

I wish you all the best and am glad your heart rate has dropped again.

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Thank you for your reply, and sorry to read that you feel it 'sad'. Anything but. Like I say, my ejection fraction APPEARS low (very low), but clearly it's inaccurate, and indeed multifactorial, as how on earth would I still be able to play badminton (several consecutive games too I might add) and also have the energy for HIIT exercise if it really is/was that low? It would be impossible, so I think the calculation is in some way resulting in and incorrect measurement, which is therefore very misleading - and I'm not saying they are deliberately doing this; far from it. It's the only way they know how and there is some merit in measuring this way, but clearly other factors need to be looked at too.

I would also like to make it VERY clear that I'm not in any way trying to 'persuade' anyone, or advise against conventional medicine. You have misinterpreted what I was saying, for I'm very much from a 'don't assume the doctors know everything' or 'that we are all human, so make mistakes'. If we don't ASK questions and do our OWN research too (the Internet is a great tool for this) then no progress will be made. As Albert Einstein said: 'First they will laugh, then ridicule before finally accepting'. If no one questions anything progress will never be made, and we just hold back progress! All I'm doing is relaying my own experiences and what works for me.

Sure, there's a huge supplement industry, and plenty of profits to be made. But all the time big Pharma pay governments DIRECTLY they will always support them: you scratch my back while I do yours. It's not 'conspiracy theories', these are often used to shut down debate, so the biggest players are still represented.

As far as 'trusting' my surgeon goes, as I did with surgery, and then lump it in with treating me medically, is exactly my point: He's well trained in SURGERY, NOT prescribing medicine! They are separate and distinct. I wouldn't want a brain surgeon to start psychiatric treatment, just because he understands the physical workings of the brain, any more than a garage mechanic would be a competent racing driver!

Surgeons spend a LOT of time practising their chosen specialism so don't have the necessary time (or even permission!) to recommend anything other than what the drug companies force on them, via the GMC boards. There are many instances where formerly widely supported drug therapy is discovered to be totally devastating: thalidomide is just one example. They have their working schedules to stick to, patients to consult and are highly pressured. So they can spend VERY little time working on alternative drug/supplement treatments. So just because they are good in one field does not make them similarly expert in another. Doctors only spend a few hours (1-3 days only if I'm not mistaken) studying nutrition in their long, 6-year training. So they are not/cannot give nutritional advice to any great depth. Hospitals often heat food in microwaves too, which completely destroys any nutrition, or at least worsens it considerably - and the food is poor quality, with table salt given too. This food is then fed to patients and in no way is nutritious (especially as much is tinned or pre-packed etc - and I don't say that critically, for they have limited budgets and their priority is on the healthcare itself). But this is getting off topic. I just want to illustrate the double standards here.

The drugs your husband took MAY indeed have saved his life, but no one can say if other drugs would have too. You will never know for sure. It's down to your perception/opinion. When in a critical condition we best accept what's offered for we don't have time on our side. We need to act quickly. BUT if we happened already to know of alternative treatments, then one might elect to use those, especially if in hindsight.

And lastly (phew....) many websites will have moles or trolls working in industry, in some form, who sign up under an alias. Again they have a vested interest to infiltrate in order to keep their beady eyes on what happening and clip dissent in the bud. It would be naive to think otherwise - with all due respect. As this site IS so important and influential, I'd be willing to wager that this is the case here too. But it might be low profile (who'd want others to raise the alarm anyway?).

So yes, I respect ALL opinion, even nay-sayers, as we need to be vigilant and not just accept what we're fed without questioning things. But I truly thank you for coming back to me; and again, apologies for the long response - but believe me when I say there is a LOT more I'm actually doing, to do with health, that I am practicing. I'm certain that it would surprise many, as I spend most days educating myself from top people and leaders in the industry of their choosing: Audiobooks, Kindle and printed versions, as well as 'What Doctors Don't Tell You' magazine (which before you say anything, is mostly BY doctors) and countless health related podcasts from highly acclaimed folk - not to mention Internet articles, and subscription e-mails etc. So a whole raft of information..........

Many thanks again and I wish both you and your husband well :-))

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