Mind-Map of Lone AF, Thyroid, Gilbert... - Atrial Fibrillati...

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Mind-Map of Lone AF, Thyroid, Gilbert's and Autism

TeaFree profile image
18 Replies

I'm new to forums about the above. So, forgive me if I'm going over old ground.

My medical history is really only remarkable for mild Gilbert's Syndrome (hyperbilirubinaemia) and mercury fillings (in common with much of the UK of my generation!). However, 13 years ago I was diagnosed with lone paroxysmal atrial fibrillation, which has since so stymied my career and harmed my marriage that I have been trying doggedly to figure out why I got it. It has also seemed to me (perhaps as a result!) that I have mild, higher functioning autism. So, I am curious, given that I exhibit hypothyroid signs too, whether and how these may be linked.

I had planned to put together a mind-map tying all the various protean symptoms and possible underlying processes, together with vitamins, minerals and medical interventions, to make sense of it all, if only for my own reference and edification.

Anyone familiar with these various conditions and other possibly allied ones, like CFS, will know what a mercurial task this can be. How very hard to come by solid evidence, or reliably beneficial results. And, above all, it is both difficult to get a hearing from GPs and fraught with problems, in terms of crossing their threshold of significance. Which may mean we either get no help at all, or alternatively (worse!) bring all sorts of inappropriately heavy-duty solutions and scrutiny upon our heads.

I had one ultimately unsuccessful ablation and several cardioversions before a protracted bout of AF in January set in motion a domino-like cascade of morbidity that forced me either to consider another ablation or a lifetime of toxic pills, or take a time-out to reassess and find alternative solutions to a problem I should not have.

The day will come when there is more recognition of our unique genetic finger-prints, routine diagnostic screening, at least for common dysfunctions, and need for tailored solutions. Whereas, presently, at least in socialised medicine, the goal is so much solving a national cost/death minimisation problem that individual benefit seems almost incidental. And administration is increasingly perfunctory, narrowly prescriptive, clerical and item-specific, instead of joined-up and holistic - at least at early stages, when potentially serious conditions might still be nipped in the bud.

So, we are thrown back on our own resources and the twilight zones of the internet, where the at best apocryphal and outright fraudulent (at worst) often hold sway, outside forums such as these at least.

In which context, after many years of trawling through medical papers and other contributions, I was delighted recently to happen upon a couple of things to share.

Forgive me if they are already so familiar as not to warrant comment.

The first, for lone AFibbers especially, is: endatrialfibrillation.com/.

Which resonates with my recent experience of being diagnosed with very low B12 last year. And is intriguing in highlighting the link between AF, B vitamin status, high glutamate, low glutamine and excessive homocysteine (Hcy). A largely unremarked association in the over a dozen years I have spent consulting leading Cardiologists.

As the site points out, Cardios don't do blood tests, or pay much attention to those from others either. But they should.

If, like me, you have even been tested for B12, and found deficient, it is unlikely your GP did more than try to get your B12 status back within the inevitable 'normal' (but inadequate) parameters. Let alone go on to check for Hcy (which is pricey!). Yet my green GP did have me checked out for dementia, which will come of low B12. Fortunately, I was doing a DPhil part-time and (otherwise) deemed compos mentis!

But the importance of B12, Folate and B complex were just one plank of the awakening I had, having suffered a TIA at the beginning of the year, following spontaneous cardioversion from that protracted post Christmas AF spell. I was denied anticoagulation until then because my CHADs was too low. And then it was mandated, of course. Yet I have had no AF or call to use it or my PIP flecainide since.

Because another plank of my road of discovery was N-Acetyl-Cysteine (NAC). I used it to combat a persistent UTI (probably brought on by briefly using Apixaban, a DOAC), but also because it has anticoagulant and anti-platelet action, assists T4 to T3 conversion in mitochondria, and is a vital precursor to the master antioxidant Glutathione (GSH), among many other things. Had this been some new medical intervention someone would be writing a paper to the BMJ about its efficacy now! Even if, like many other solutions, it may provide only partial and ephemeral relief.

But why did NAC and achieving decent B vitamin status work for me at all to date?

And how might this tie in with e.g. a liver issue like Gilbert's (glucuronidation) and mercury fillings, autism signs, gut dysbiosis, diet, and hypothyroidism, if at all?

Well, forgive the long post, but I hope it will be worthwhile. Take a look for yourself if this whole ball of twine, or something like it, is not already familiar to you.

Because I found my quest for a Mind-Map to grasp it all (you can perhaps now see why I needed it!) had already been largely provided by Carol A. Hoernlein in 2008.

Carol is a reformed food engineer and has put over 30 years into elucidating the adverse impacts of the food industry's exploitation of glutamate chemistry. The implications go beyond MSG or a possible aetiology for Autism. The pathways she elucidates touch on the rationale for things many of us have discovered the hard way about our own AF, including the vital roles of Taurine, CoQ10, B vitamins, Carnitine, Glutathione, Magnesium, genetics, and proper gut and mitochondial functioning in fighting Glutamate, Homocysteine, toxins and fungal metabolites.

She quit the food industry in disgust to found her own her (entirely donation and promotion-free) information website: msgtruth.org/.

See, particularly, her chart summarising the fruits of her research-intensive expertise crystallised here: storage.googleapis.com/wzuk....

Do not be put off by the apparently irrelevant MSG and Autism themes (they may suggest amendments to your own regimen, as well as unsuspected genetic keys).

This chart is really the whole point of my post. It rewards very careful scrutiny.

You can perhaps map your own unique circumstances and what you know of what works for you and of your symptoms and genetics onto what Carol related in it.

Anyway, I hope if you got this far and read the material and pursue the links it will prove as enlightening for you as it has been for me in understanding the functional ties between some of the triggers for AF and elaborate network of co-morbidities.

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TeaFree
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18 Replies
Paulbounce profile image
Paulbounce

Hi TF.

There is lot to take in with your post. As far as I'm aware autism and afib are not related. Diet can be though. I am really tired tonight but will go though your comments more in the morning and try to address your post in more detail. Just one thing - I don't think liver affects afib. You can take Vit B compond tablets (20mg Nictinmide) but they won't help with afib.

Great post anyway - let's see what I can up with tomorrow. Have a lovely evening.

Paul

TeaFree profile image
TeaFree in reply to Paulbounce

Yes, sorry Paul, it's not the sort of core data-dump anyone needs before bedtime!

And, of course, we normally examine problems by drilling down into them. This isolates them from other issues and is the basis for specialisation everywhere, not least in medicine.

But some intractable problems may have seemingly unrelated correlates and co-factors, 'outside-the-box', which is what this is about.

At a mundane level it is not hard to see how this may be relevant to AF, because many of us are at least partly vagal AFibbers and, as the name suggests, the tenth cranial nerve touches a lot of bases before it finds its vagabond way to enervate the heart. And that's no doubt why the heart is regarded as such a centre of feeling, because it's a key part of a joined-up whole.

However, as Carol Hoernlein's map illustrates there are other curious resonances too.

It's probably no coincidence that I have spent much of my life looking for similarly diverse explanatory determinants of economic and market behaviour (at least as thankless a task!).

But I have also been impressed by evidence-based medicine (who knew there was another sort, right?) and the slow convolutions that received medical wisdom can go through.

Many of us have seen this in the way we were corralled into anticoagulation at the drop of a hat a decade ago, only often to be denied it for fear of bleeding (despite better drugs) today.

Another case in point is that the 'block-buster' drugs of the 1980s were histamine 2 receptor antagonists, designed to turn off gastric acid 'like a tap', to combat stomach ulcers. They have since been rebranded as proton pump inhibitors and used largely for other things. Because in 1982 Barry Marshall and Robin Warren discovered that H Pylori causes ulcers, for which they received the 2005 Nobel Prize in Medicine. Today it is established that some 90% of duodenal and 80% of gastric ulcers are caused by this bacterium, and treated by antibiotics.

Incidentally, it is interesting that my particular remission, from what seemed at the beginning of the year to be a crisis of spontaneous cardioversion from persistent AF, culminating in a TIA (with implicit lifelong need for drugs/anticoagulation or, alternatively, surgery), followed a not wholly unrelated spell of multiple, banal antibiotic courses (for possibly DOAC-induced UTIs), after which I strived to reinstate a proper digestive balance.

CDreamer profile image
CDreamer

Well done!

I’ve always adopted a very similar mindset to my health and in my case I believe my AF developed because of genetic predisposition, along with poor lifestyle in earlier life - abusing my body with cigarettes and alcohol, an underlying neurological condition and not good enough nutrition in early life.

I was lucky as I found a GP practice who are very forward thinking and did test for B12 regularly - and recognised that the ‘normal’ range levels are insufficient. My levels weren’t low enough to treat but I was advised to supplement. Completely agree with all of the supplements you have looked at, CoQ10 in particular is recommended by most of the cardiologist that I have spoken to. We need LOT more research is needed into nutrition and health. AND that AF is related to other health conditions such as liver dysfunction, neurological conditions and especially gut response.

Thankfully that is very, very slowly starting to happen. I recently joined the Zoe Food Experiment and am waiting for my tests results on how my body processes carbs and fat to finally put to bed the High Fat, Low Carb theory.

I also believe that we have/are losing our innate ability to know what is helpful and what is harmful and rely far too much on medical opinion - which in my experience is often opinion biased rather than evidence based.

AF is I believe a symptom of underlying conditions and so we need to find the underlying reason for poor health. Unfortunately the harm caused is not always reversible.

I think one of the most important bloods that often gets missed off AF is imflammatory indicators and food testing and yet it is one of the easiest and probably cost effective approach’s.

Thanks for your very interesting post, lot to take in.

Auriculaire profile image
Auriculaire in reply to CDreamer

I too abused my body when young -cigarettes , alchohol plus various illegal substances. I was not that well nourished as a child ( and I am sure my mother was not well nourished during pregnancy) and it was only in my late 20s that I started to pay attention to my diet. However I started with afib aged 62 after 30 years of " sensible" lifestyle. Do you think that the earlier burning the candle at both ends can still have an effect after such a big gap? There is also the factor that from age 36 to 60 I practised a form of dance that has big demands on the heart.

CDreamer profile image
CDreamer in reply to Auriculaire

I think there are so many factors but for me some people seem to have more Resiliance than others. I think early trauma plays a part as does environmental, nutritional and other medical conditions - everything is connected to everything else. When one cog malfunctions, it affects everything else.

I think we need to view all I’ll health through an wholistic lens and not mechanistically - although as you know - my solution was pacemaker but then I have another reason why I believe that worked. Then again I was talking to a lady this morning who has exactly the same pacemaker as I for whom it didn’t help so she’s just had ablation and doing really well. 🤷‍♂️

TeaFree profile image
TeaFree in reply to CDreamer

Not at all, CDreamer, it was a bit of a shot in the dark, and I am encouraged by your own and other thoughtful responses.

Medics have a way of inducing AF so that they can better ablate it. And so it is not fanciful to suppose that there are myriad other ways to go about the same end, by playing tunes on elements of a very sophisticated system. We just do not know what all the variables are yet, and what expression ties them all together, so that we can best reverse engineer things to 'switch the alarm off'.

And, of course, that in itself is an interesting proposition because, were our houses on fire, we would regard it as a bit perverse if the sum of all our efforts was devoted exclusively to switching the alarms off. Rather than putting out the fires, and seeing how they occurred, in order to avert a recurrence.

This is the underlying issue I have with a lot of the understandably expedient attempts, often employing great virtuosity, to 'paper over the cracks' in AF treatment. Because, as I say, we are dealing with a pervasive mentality that only acknowledges things when they are serious. In which case there is nothing more certain than that they will all become so.

I am also of a mind with you, therefore, that serious things do not necessarily have to have serious causes. And, contrary to the profiling integral to much medical administration, we are not all the same.

Inflammation, gut dysbiosis, nutrition, common genetic deficiencies and DNA adducts (acquired from e.g. smoking, welding, fungal metabolites etc.,) are all part of our substrates.

We are only beginning to understand the links between gut and brain, which develop together and share many of the same neurotransmitters, so it is no stretch to find that seemingly psychological conditions have genetic, nutritional and environmental roots.

That's why Carol Hoernlein's chart struck a chord with me. She wasn't setting out to explain AF. Far from it - AF is almost a footnote. She is extrapolating, from some considerable knowledge, to lay out the exceedingly protean ramifications of glutamate chemistry for, among other things, one of the other great protean mysteries of our time - Autism.

What's interesting are the resonances and also the informed, lateral, holistic approach.

I think given your obvious interest in carbohydrate and fat metabolism, among other things, you will find it very useful to read her website, and spot where key heart health supplements (like Sinatra's trio: D-Ribose, CoQ10 and L-Carnitine) fit in, and why.

But for people who, quite understandably, want a simple one-stop solution to AF, like 'scrapping the alarm', sadly this is probably the wrong shop. And, I think we agree, it probably misses the point.

CDreamer profile image
CDreamer in reply to TeaFree

I will certainly look at the site. I’m halfway through the Zoe testing App which uses constant glucose monitoring gadget for 14 days, blood and gut testing. I’ll post when I have the results. joinzoe.com/

It’s worth listening to their free Podcasts.

The other system which is only just beginning to be researched which resonates with your “alarm” analogy is the ANS of which the vagus nerve is a part. People do seem to resonate with that more than nutrition, which I find curious.

By the way - did you know that Dr Sinatra sadly died (pancreatic cancer) last week. His son is continuing I believe.

Best wishes

Singwell profile image
Singwell

Lots to digest here so have saved this post. Am a big fan of mind mapping! Yes, mainstream medicine fails us by failing to join up the dots. My particular dots include a defective vagus nerve (digestive end tied when I was 19 due to stomach perforation), long term digestive problems, stress and anxiety, borderline hypothyroidism post menopause and BP that slowly crept up from rather low normal to high, unnoticed.

Auriculaire profile image
Auriculaire in reply to Singwell

I found the references to NAC in your post very interesting. I have been taking this supplement for several years . Last year I switched to every other day rather than every day and now realise that my afib frequency started to increase about that time. I am going to return to taking it every day and see if it makes any difference.

Singwell profile image
Singwell in reply to Auriculaire

Yes, I'm going to be checking them out too. Thanks!

TeaFree profile image
TeaFree in reply to Auriculaire

I'll pick this up as your point seems directed to me, Auriculaire.

NAC is something that has been of interest to me for years, not least because of its role adjuvant to heavy metal chelation (I wanted to eliminate mercury as a possible cause of AF).

Gilbert's is often ignored as of no consequence by GPs, but it intimates, like a lot of other common genetic mutations (MTHFR is another key one), a potentially very pertinent route to failure in a complex system. And AF is just the 'safety valve'. Problems in liver detox lead to the accumulation of toxins. And this is also central to Carol Hoernlein's view of a possible aetiology for autism in children with otherwise minor genetic defects.

Gilbert's is all about flawed glucuronidation in the Phase II detox of the liver. If it goes slow it means that far from ditching toxins the body is making them a good deal more potent and then leaving them circulate. Which is not a good look - literally, because we go a bit yellow.

Fortunately, bilirubin is also a very potent antioxidant in its own right (the body is clever), and reduces vulnerability to CAD, which is an unappreciated bonus (particularly by GPs who prescribe statins for CAD at the drop of a hat - "What's the harm?... Anyone who appreciates the importance of CoQ10 will know the answer!).

So, to your point, NAC was an obvious way for me to boost GSH, which I had just flirted with in the past, and not for AF specifically. Having read all of Cutler's stuff on chelation, I was very conscious of the half-life (and I commend attention to that to you too if dosing has been an issue for you). NAC quickly drives Glutathione (GSH) availability, and ALA helps recycle GSH. So, I make a potion (with ALA, soda bic, and vitamin C) and take a teaspoon every four hours or so throughout the day (double-shotted at each end) the idea being to maintain the level of GSH availability. Like hiking B12, it is hard to OD with NAC but easy to 'shunt'. NAC doses used in acute paracetamol poisoning are massive.

It was NAC's role in fighting intractable bacterial biofilms in UTIs, as well as possible benefits for T4 to T3 conversion which brought me back to it, almost coincidentally.

Because I am bradycardic, mildly hypercholestemic, postural hypotensive, have dry skin, missing the outer third of my eyebrows etc.. All of which in an age before TSH testing and "normal parameters" would have screamed hypothyroid. And I figured I would try to boost my flagging T3 and gee up my mitochondria with NAC as another way to defeat AF, by addressing a well-known, possibly silent, subclinical thyroid issue.

Well, something seems to have worked. And it was really only NAC (later ALA too) and B complex that I changed.

I came off DOACs because of the UTIs the Apixaban (I got after my TIA) seems to have caused (it is a known side-effect and counterindication). And have stayed off (you need doctor's approval it should be noted to take NAC and anticoagulants together, because NAC is one!).

And I take no other prescription medication, my flecainide is PIP, and has stayed in my pocket lately (long may it last!).

Unless, that is, the antibiotics courses I had for my UTIs, and the kefir and fermented vegetables I used to restore my gut health afterwards, were also part of the equation (as they easily could be - my most likely problem with B12 deficiency was either low stomach acid or leaky gut).

NAC is a truly remarkable and relatively cheap compound. With an extraordinary breadth of almost uniformly constructive therapeutic impacts. And so it is small wonder in the 'States there were moves to stop its OTC availability (Amazon stopped selling it) because it was categorised by the NDA as a drug (see: fda.gov/food/cfsan-constitu.... It is so potent in firing up protective liver detox that it is the go-to hospital solution for acetaminophen (paracetamol) overdose, as you are probably aware.

Auriculaire profile image
Auriculaire in reply to TeaFree

I only take a half dose of Apixaban as the full dose gives me awful backache and worsens my joint pain. So I am not that worried about taking 600mg of NAC as well. I was finally diagnosed with hypothyroidism after more than 7 years of symptoms. By that time I had put on nearly 2 stone and lost the outer third of my eyebrows. Only when I started on a T3/T4 combo did I stop putting on weight though it was hard to lose any. The eyebrows came back a bit. After being diagnosed with afib the T3 was stopped . The eyebrows have gone again the weight has come back. I once met a woman whose facial features screamed myxodema but whose TSH had only just got into the range that her doc would take notice of. Goodness knowes how many years she had been hypo. I read somewhere that NAC was showing promise as a covid treatment and it was after that Amazon stopped it in America.

TeaFree profile image
TeaFree in reply to Singwell

Absolutely, Singwell, I appreciate your comment. AF is often a stealth condition. When I look back now I can see very early intimations and possible episodes that went unremarked.

I think at one routine health check decades ago a doctor spotted something that didn't show again when he checked it on ECG, and so he concluded I had the 'perfect heart'. Which of course missed the point. Because a lot of AFibbers have little wrong with their heart.

Consequently, AF was the last thing I expected. When I ran on treadmills and those dodgy handhold heartrate monitors said I was doing 220 bpm, I thought "How healthy am I? That's the rate you're meant to deduct your age from to get your max!"

I hear what you say about the vagus, too. Of course, I forbade myself all the usual AF prohibitions: coffee, exercise, alcohol etc.. But none of them did it for me unless they happened to trigger e.g. a gastric issue, because mine is not adrenergic AF. I am more likely to get AF after a meal, or by missing one, lying back, bearing down, going to bed, eating spicy food, performing the Valsalva manoeuvre etc.. My PVI ablation focused on the vagal nerve endings (a pet theory of my Cardio).

So, um, "digest" is the operative word, in more ways than one, and there are other parallels between our AF progression. So, I hope you get something out of Carol Hoernlein's work.

Singwell profile image
Singwell in reply to TeaFree

I'll be checking out your links. Thank you for sharing

ozziebob profile image
ozziebob

Hi, there is also the remarkable testimony of an Australian Steven Carr in overcoming his AF. Vitamin D levels are particularly important in his regime, and as I was recently diagnosed with a deficiency of this Vitamin, my interest was alerted. Recent research points to an insufficiency of Vitamin D in the general population today, but UK GPs don't test the level unless specifically requested, or other symptoms appear.Steven's testimony is online at ...

carrafibdietinfo.com/

I hope you find it helpful, and inspiring.

TeaFree profile image
TeaFree in reply to ozziebob

Thank you so much, OzzieBob, I hadn't seen this article by Stephen Carr before. And it is both inspiring and fascinating, because there are so many parallels with my own experience.

The 'English Disease' link here is particularly telling. And may well be part of my 'journey', in that vitamin D, the lack of which engenders rickets through calcium deficiency (particularly in children confined indoors), has been something I have been very diligent to maintain.

This is partly because, having spent a large part of my career in the Middle East, I am conscious of the loss of sun. And I am also aware of the importance of calcium channels and the possible link of sunshine with other seriously degenerative ailments, like MS, too.

However, I was initially diagnosed in the Middle East. And I was largely 'living out of a suitcase', so sun and excess dairy were probably not my paramount initial problems. But, if Stephen's right, returning to the UK could have been, had I not controlled for vitamin D.

Of course, Doctors in the UK are becoming more conscious of the need to test and maintain levels of vitamin D, in no small part because a significant part of our population has darker skin and is even less well able than paler folk to get sufficient daylight. But you're right, doctors don't routinely test even for common, indeed prevalent deficiencies. It is all a bit 'point and shoot', depending on the 'mood of the chef' when they do. And there is a pervasive lack of curiosity in joining the dots, which is why we have to take a DIY approach if we don't find the toxic heart drugs, anticoagulants and/or ablation route particularly attractive.

What Stephen does gloss over of course in considering the degenerative nature of the problem is that 'AF begets AF'. Not least because of the vicious circular remodelling of key paths. Most notably left atrial dilation, which does exhibit a very strong correlation with AF. I guess it goes without saying that the name of the game is to inhibit that regress.

And a big part of my own preliminary work in retrospect was losing 10kg (from 88kg to 78) in remarkably short order through attention to controlling my diet but also introducing kefir, which seemed to have a very significant part in my weight loss. As I say, even if you don't ultimately achieve Nirvana in finding a solution to your AF, it is certainly a fairly healthy workup in other ways!

It was the fact that diabetes is one of those things that has to be ruled out for a lone PAF diagnosis that first set me thinking about taking a lifestyle approach to a condition I just thought I shouldn't have. The testimony of people who had beaten type II diabetes through diet was an eye-opener.

So, all of these avenues are very interesting if we can just map them onto our own particular circumstances of pathology and genetics to figure out what for us is the outstanding 'sweet spot'. I am quite sure that this conjunction of genetics testing, metabolic screening and lifestyle management against a custom template will be the norm even for subclinical conditions in a decade or two. It could even be a one-stop-shop. But some of us don't have the luxury to wait! And of course there are some interests unkeen to demystify the process.

Steven's experience in testing all the variables is more exacting but similar to mine. But I am conscious that on the one hand we have to identify all of those variables in terms of their 'local', independent impact, and then, like tuning an engine, identify be other unique components and differing optimal variable 'amplitudes' in our biological make up.

This is another area where 'shotgun' medicine fails to shine, as it tacitly assumes we are all the same, and that our particular routes to ill-health don't have a subtle genetic slant. This is expedient but a bit perverse, given all the evidence we have of the singular roles of our DNA and lifestyle.

I do wonder if Stephen's experience with managing a higher meat/protein quotient in his Paleo diet isn't also a tacit nod to the importance of B vitamins, particularly B12 and folate.

It is almost impossible to get sufficient B12 without consuming organ meat or supplementing (which can be tricky) and, naturally, it is a common condition (getting commoner with vegan and vegetarian diets) which is not tested often enough, and then not in a way either to combat recurrent deficiency or build-up of homocysteine.

All of which intimates another part of the problem, in that in trying to stay healthy and do what doctors advise, we can inadvertently do ourselves harm. As Stephen points out, dairy consumption is a novel phenomenon. Most Asians and many members of other ethnicities lack the means to digest lactose. Cows were initially farmed for their blood, not their milk!

So there has to be merit in going back to basics in our individual paths to beating AF. And another of those things to watch of course if you don't have the luxury of making all your food from scratch is the role of glutamate (the way food manufacturers make things tasty) in a wide spectrum of morbidity associated with too much neurological excitation, as Carol Hoernlein's chart shows.

While my own final 'key', having perhaps controlled for a lot of other variables, seems to have been using NAC. Without initially any direct intention at all of combating AF, except insofar as I figured helping mitochondrial T4 to T3 conversion and also assisting GSH production might aim off for my suspected subclinical hypothyroid condition and Gilbert's syndrome.

Many thanks again. Food for thought. I hope it may be useful to someone, musing aloud here.

ozziebob profile image
ozziebob in reply to TeaFree

TeaFree, Thanks for your considered reply, which definitely helps me.

Unfortunately I don't seem to have the patience or intelligence of contributors, like yourself, here on the Forum who pursue the aetiology of their AF much more thoroughly than me. But the sharing of your testimony certainly gets my attention. Perhaps I just need more time to absorb the details of such contributions and slowly evaluate their relevance for me. Thanks again.

My latest victory came this last Tuesday when I managed to get a 3 month (since the start of my loading dose) interim Vitamin D blood test while at my first Cardiology appointment, overcoming the resistance of my local GP who couldn't do such a retest until 6 months had passed. A small victory perhaps but very important to me. I thought it important to see I wasn't overdosing myself with my Vitamin D3 supplementation, as my loading dose was more than double the highest NICE recommended dose. I have subsequently been advised that such NICE recommendations are woefully out of date. No change there then. So I'm now waiting for these blood results.

Surprisingly I didn't actually see a Cardiologist on Tuesday, but a Specialist Arrhythmia Nurse, and no complaints from me after reports on such Nurses here on the Forum.

Re Steven's testimony, I am a non meat eater, so I am still considering the consequences of this re his diet recommendations.

Keep up the good work.

Searching for AFfree

aka bob

TeaFree profile image
TeaFree

No worries Bob, I hope it is a help. And I don't know about 'patience or intelligence', most of us would do our nut in over this problem were it not likely to bring on a bout.

It is a humbling experience for anyone. Even reflective cardiologists are almost apologetic about not having a satisfactory solution - especially the ones with AF themselves! I'm under few illusions that whatever I've done for myself (for now) is anything other than coincidental and that my remission will end, maybe with a bad winter, bad cold, stressful patch or spicy meal. Who knows?

A lot of recommendations for anyone are just a stab in the dark. I have a cupboard like an apothecary's. And I am sure I'm not alone. I think it's like tweaking all those sound mixer slider knobs in a recording studio until you get the tune that works for you and that you can live with. But it is likely that there is a sweet-spot or 'sweet-range' worth identifying.

I advocate NAC to gee up your mitochondria among many other things, just like one guy swears by zapping homocysteine and another boosting vitamin D. It is probably a bunch of things though. Not one for everyone, or this would not be such a hard nut to crack. NAC is a direct precursor to the body's master antioxidant glutathione (GSH). And I reckon it's just good housekeeping to give it a try, in case. Like a lot of the other stuff I'll mention here.

I make up a solution, say 5 grams of NAC in 300mL with some vitamin C to aid absorption (I stick in one of those zinc and Vit C fizzy things) and just take a teaspoonful in water or tea or whatever ever 3-4 hours, double at breakfast and bedtime. That lasts about a fortnight, at just under 100mg per teaspoon, or around 500mg per day. Not likely to give you kidney stones. See if it makes a difference. (I include ALA too, but that's a different story.)

A lot of us have sluggish mitochondria. There is a difference between having a lot and having them work properly. And that is pretty crucial in the heart. Plus, NAC can assist with other things you want working optimally. And half-lives are important for things that are not stored or intrinsically slow-release, so an intra-day batch process makes most sense.

Two elementary things about AF are irrefutable: the pulmonary veins (bringing oxygenated blood to the left atrium from the lungs) suffer a lot of mechanical stress (which can result in AF-sustaining dilation) and that oxygenated blood is cram full of reactive oxygen species that want defusing with GSH among other things.

As Stephen Carr's journal updates attest, you probably don't ever get free of AF. Like the diagnosis of lone AF itself, its contingent. You're only 'out on parole' until we really know what it's all about. That's the point really: developing the 'wiring diagram'.

Meanwhile we are all like a famous tribe, looking for the 'roadmap'.

There are some pointers though. B12 was another for me. Of course I had flirted with it before and B vitamins generally. But supermarket B vitamins are worth squat. You have to pay up to get ones with many multiples of each B vitamin to do any good (not just e.g. 80% of RDA).

And B12 can be hard to replenish by mouth (although I found dissolve-in-your-mouth methyl cobalamin, which is a must, to be effective). Then the issue is when to stop. Fortunately, there is not a lot of downside to overdoing vitamins B12 and D. Which is not universally true of other things (like selenium for instance). And you can back off for a spell to half a tablet or one evey few days until you feel the need. Do not go taking B vits with your vitamin C though, in this case it will inhibit absorption. It's one of those things, like making a point of taking ubiquinol (CoQ10) with a fatty meal (e.g. a bit of cheese). Tempting as it is to chug all those tabs as once, it won't do. They cost a packet, so best finesse them properly.

The wonder is, as your own experience shows that I got to be 63 and a dozen years with AF before anyone thought to check my B12. And then found it was 129 ng/L (197-771ng/L). Duh! The Japanese take the view that it wants to be over 700ng/L. Small wonder I got a call from another GP to check I had all my marbles. Pity no one thought to follow through really, to check homocysteine. But once you're 'in range ...'. That started me on the Homocysteine and Glutamate kick. Almost anything that is processed and you would eat before dessert is likely to be stuffed with glutamate (or its less obvious cousins). It's that other flavour we crave, umami, or savouriness. Unfortunately, there are lots of ways that can do you no good.

But, by the same token, being a good citizen and following doctors' advice can also do you no good. Because if you switch from liver and steak and kidney to chicken, or ditch meat entirely, even if you don't have an absorption issue, you had better know where to get B12.

Apart from my supplement, I make a point of having mussels once a week - it's as close as I can get to clams (the B12 'mother lode') in the UK - less than a couple of quid, and five minutes in the microwave. But sounds like that will not be your bag at all. So, that is a base you need to cover pronto. Check out Natural Factors Methyl cobalamin: amazon.co.uk/Natural-Factor.... Pricey at £20 for 60 tabs but they work. And I am not on commission!

Other elementary things to get right are diet and gut. For people like me with low B12 the likely causes are malabsorption or low stomach acid. The former is best dealt with by eating the right stuff and encouraging the right bacteria to move in, and e.g. candida to move out. A bit of apple cider vinegar in water before a meal, or betaine, will give your stomach acid a starter for ten. Low stomach acid, despite all the antacid ads, is widespread and gets worse with age. If it's not going right, food is neither properly sterilised nor nutrients released.

There's always a good chance that magnesium is low, it's a lifestyle thing. And iodine too - our soils are depleted. And pretty fruit and veg need not be nutritious. There is not much point in even testing for serum Mg. I think GPs use it to reassure the worried-well. Because unless you're unfortunate enough to be on life-support, your body will move heaven and earth to maintain Mg in serum. The real question is: is it at adequate levels in your cells?

I think the best way to approach iodine and Mg is just to stick your feet in a bowl with a handful of Epsom Salts and a few drops of Lugol's in the water. You can reheat the solution in the microwave and reuse it till it goes thoroughly brown! I figure, as habitual barefoot Paleo swamp-dwellers, it would have been careless had our bodies not thought to dump some toxins via that ready foot soak, so why not enjoy the next best civilised thing before bed?

And few people feel any worse for a bit of sun and salt sea water, after all!

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