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Lone Paroxysmal AF or Hypothyroid Symptom?

TeaFree profile image
41 Replies

Mindful of PaulBounce's recent plea for more posts to assist viewers newly diagnosed with AF, I thought I should share something of my own experience.

And you, dear readers, can perhaps answer the above question for yourselves, if you have the appetite to read an overlong post (like Twain, I hadn't the time to write a short one!).

Because, rather belatedly, my small odyssey has brought me full circle, to something of an epiphany.

I would like to spare others the same journey. And, for what they are worth, provide some insights into issues that seem frequently to crop up.

First a disclaimer though, I am not a medic, but have taken a natural interest in the field of AF.

And, clearly, there are many sufferers for whom there is an identifiable pathology, a 'smoking gun', if you like. I am under the impression these are the great majority.

However, what I have to say may be more interesting to those, like me (at the time of diagnosis), relatively young and fit, whose AF seemed to come out of nowhere, and be rather 'undeserved'.

The medical term for this is 'idiopathic' (Ancient Greek for "search us!") or 'lone' AF. A diagnosis of exclusion. But the trouble is AF is taken rather seriously. Whereas some of the stuff to be excluded really isn't handled very well at all. There is the rub.

There is a very marked danger of the hapless straying in front of a medical bulldozer, in passing across that liminal zone between being just a probable hypochondriac/nuisance to constituting what any medical newbie can recognise as a 'medical emergency', and place on their 'radar'.

I was diagnosed in the Gulf in 2009, but in retrospect had probably suffered AF bouts for years, possibly decades. I was 50, fit (ran 5-8km per day, or often walked 16km). And, long story short, was put on a beta-blocker ("rate control is as good as rhythm control"), which made me feel about 90, and left stuck in AF (pending a return to the UK - which pretty much ended my career), because cardioversion had to wait on weeks of warfarinisation at that time.

Nevertheless, an albeit peremptory attempt at exclusion had taken place. Diabetes and thyroid, the 'usual suspects', were ruled out, and my heart seemed normal, bar elevated LA volume.

But, in retrospect, a slightly below range free T3 test result was totally ignored. I had no way of interpreting this properly then.

You really want free T3 to be measured for a start - most UK GPs don't - and in the upper third of the range). I endorse a private thyroid test e.g. Medichecks (£86, £15 off with BLUELIGHT15).

Back home, my first recourse was to a senior Endo at Barts, because I figured there wasn't anything wrong with my heart - except that I was in AF.

Well, not having a goitre the size of a tyre, the Endo took one look and sent me to a senior Cardio colleague. Obvious really, wrong aisle! Sadly, most Endos are focused on diabetes, not thyroid conditions. And thyroid conditions are generally extraordinarily poorly handled by the NHS.

After almost a year in permanent AF my cardio decided that the prospect of cardioversion had been too lightly dismissed. So, he did an electrocardioversion. And, presto, I was delighted to be back in NSR. With pill-in-the-pocket Flecainide (and no betablockers or anticoagulation either).

I had read everything I could on the subject, taken all the right supplements and experimented with a gluten-free or lactose-free diet. But after a bit you forget how you were doing before, and have no narrative to go by or measure of what's working, let alone formal medical support for 'alternatives'.. . And the AF episodes kept coming back.

I was pretty asymptomatic but knew when I was 'out'. An exercise stress-test was stopped soon after it started because my BPM passed 200, although I was just warming up in AF! And, in years past, on those treadmills with pulse meters, I routinely reached 220+ BPM, the number you're supposed to deduct your age from to get VO2 max, and just thought 'How fit am I?'

By 2013 I had had another couple more electro-cardioversions, accelerated by the need for heparin if an AF episode lasted more than 48 hours, for fear of a month-long spell on Warfarin.

Then I cried 'uncle' and had an ablation - not coincidentally most of the people who know anything at all about AF, let alone lone AF, make their living by ablating it. And 'to a child with a hammer...'.

Victory was declared after the blanking period. No doubt I was written up as a 'lucky one' in the next conference presentation data. And then my AF episodes returned. But few ablation specialists do follow-up, handholding, supplements, or alternatives...

No surprise here, normal course of the pathology, degenerative condition, 'AF begets AF' etc.. Have another ablation, right?

But here's the thing, my medical history prior to AF had been remarkable only for Gilbert's syndrome, and other things of 'no clinical consequence' like: bradycardia (resting 38bpm); mildly elevated cholesterol, creatinine, and RDW; postural hypotension; hairloss (not MPB); loss of outer third of eyebrows; dry skin; peripheral neuropathy, pins and needles; UTIs, adverse response to Cipro (mega doses of fluorine); chest infections, candida, poor digestion, diminished sweating, insensitivity to temperature (it was not infrequently 45 deg and 100% humidity where I had been), dizziness, low back pain, insomnia, withdrawal, anxiety. Nothing you can 'hang your hat on' though.

I did have a bit of a 'funny turn' once, where in the middle of the night I was unable to swallow a glass of water properly and had difficulty speaking other than like Donald Duck for a brief spell. Which was also dismissed as of no consequence after a full MRI etc., workup.

And I explored that other ablation as a last resort, but wanted to manage things myself, on the basis that the AF was a sign, like a fire alarm going off. I wanted to deal with the 'fire', not just knock the alarm off for the peace of the neighbours. Mine seemed like vagal AF after all, and therefore prone perhaps to some unsuspected issue along the extended course of the 10th cranial nerve.

I requested precautionary anticoagulants, but got turned down by my Cardio (the dogma having done a complete 180, despite DOAC availability by now) because my CHADs score was too low, and (just maybe) because this would concentrate my mind on having that ablation... No one dies of AF per se, after all.

Yet, if you have an electrocardioversion you need anticoagulation, and no medic in their right mind would conduct one without a TOE. Whereas, if you cardiovert at home, that's all OK! No one is on the line for that!

Coincidentally, like many of us, I had my three Covid jabs (vulnerable group, after all), and also an unusually diligent GP tacked a B12 test onto a blood panel, after she had been concerned 'I might not survive the night' just because I checked in with my umpteenth AF episode. Go figure.

The B12 came back showing 129 ng/dL (197-771 this range itself is generally held to be far too low, incidentally). And I was told to get myself some tablets to correct it, which I did, PA having been ruled out (no parietal cell antibodies).

So, last year, after a prolonged AF bout I got back into sinus rhythm. Hurray! And then had a TIA. Boo! But the good news is, now I qualify for anticoagulation... Suddenly it's imperative, again.

However, I may be wrong-headed, but I venture to aver that, despite having been aggravated by me taking up running in my 40s, and no doubt distending my LA (it bears the brunt of not just mechanical stress but also free-radical, highly oxygenated bombardment from the lungs after all), the root cause of my problem was just western diet, stressful lifestyle, and maybe a genetic predisposition to hypothyroidism all along.

It may indeed be hard to turn back, even what was previously billed as a 'perfect heart', once the AF degenerative feedback processes have set in, but I am certainly no Olympian with 'althlete's heart'.

My normal, resting heartrate has just been going slow - like the rest of my entire metabolism!

I think I had just not recognised the early warnings. Why would I? And, like many of us, I was almost certainly deficient in magnesium, iodine, and vitamin D - probably due to malabsorption because of an adverse feedback between adrenal/thyroid and stomach acid.

Which, incidentally, also tanked my B12, producing excess homocysteine (very bad), while stress sent what T3 my starved and poorly converting mitochondria were producing down the reverse T3 leg.

All the modest signs I have exhibited taken together actually scream 'hypothyroid!'. Probably due to poor conversion of T4 to T3, possibly due to environmental toxicity, or a host of common causes.

In the past, elevated cholesterol alone would have been cause to prescribe simple, natural desiccated thyroid. But now there seems to be some sort of hypothyroid denial across the whole medical profession, and things like iodine and NDT which have been tried and tested staples for over a century are in BigPharma's sights. It's getting so you might come by a cocaine scrip more easily.

Whereas, all my prior symptoms from top to toe said 'go slow'. And point to thyroid dysfunction, if you care to join the dots and know just how protean the impact of hypothyroidism can become.

The consequence of which is that what starts as stress, bad diet, toxicity, malabsorption, and perhaps overcompensatory late, over-exuberant exercise, may become something that does show up all too well on the medical radar - only to be treated with knee-jerk scrips for e.g. statins, and Whac-A-Mole surgical expedients.

Adverse responses to betablockers and statins or fluoride-containing medicines should never be ignored btw, they can all impact the hypothalamic-pituitary-adrenal axis, and disclose a latent thyroid condition.

So, it is at least a thought that, caught in time, and properly diagnosed in a more holistic manner, 'lone AF' may be just a 'wake-up call'. That, with lifestyle change, which excludes autoimmune stimulants and pro-inflammatory foods, may help symptoms be ameliorated, if not eliminated. And some additional good done to boot.

When we encounter a big problem we, not unnaturally, look for a big cause and/or a big solution.

However, the thought to conjure with is that the reason the cause of lone AF is so elusive is just because it is systemic, across an exquisitely interlaced system of small dysfunctions that 'snowball', but defy any single medical specialty. And comprise the fabled AF 'substrate', which perhaps lies in something as mundane as struggling mitochondria.

Sometimes it literally may pay to sweat the small stuff. It's not so small.

Even though it may be hard to fix. It is inconvenient, and takes time and dedication to change a lifestyle, fast medicine, like fast food, may not be the best approach, or at least not alone.

That's my thinking anyway.

And, right or wrong, it took 14 years to get here.

So, it may be worth anyone sporting a new diagnosis to find out about some stuff that your GP won't help you with, before you get on the waiting list for something they will.

My most recent reading has been Dr Sarah Myhill's book: amazon.co.uk/Underactive-Th.... Which I commend to anyone on this forum, whether with a hypothyroid diagnosis or not, and maybe with lone AF or not. It can't hurt you.

And I should note that, beyond very briefly being her patient a decade ago, I have no ties to her whatsoever (but probably should have paid more attention then!).

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41 Replies
jeanjeannie50 profile image
jeanjeannie50

Interesting post. I was diagnosed being hypothyroid years after AF kicking off. Must admit I've not had any high heart rates since starting Levothyroxine, but am still in constant AF. What are you taking now for your lack of T3 - a supplement of that?

TeaFree profile image
TeaFree in reply tojeanjeannie50

Thank you. Good question! And it may be interesting to others too, I think. So, my apologies if I over-elaborate here, Jeanjeannie50.

I had been doing my research for some time and hanging around sister sites for new leads, feeling increasingly that I should really procure T3 somehow and give it a trial. Conscious, of course, that it's hard even for those who have documented thyroid pathology and have been on it for years to get their scrips renewed. Probably as well I didn't holiday in Turkey though!

However, in parallel, I had also long been trying to chelate mercury (it is one of the reasons I consulted Dr Myhill ages ago). I had always thought that about the only unusual medical thing about me was that, like many of my generation, by 18 every tooth in my mouth that would hold one had been drilled, filled and billed, to accommodate the most toxic element on the planet (bar the radioactive ones!).

Anyway, I read, among the late Andy Cutler's posts, that between chelation rounds it was vital to sort out the adrenals. A message also familiar to anyone addressing thyroid issues too, for which adrenals are 'upstream'.

This made sense, as I was going through a lot of stress (longstanding relationship breakup) and incipient AF, despite a very protracted spell of remission from it. So I started with an OTC adrenal glandular a couple of months ago, just a single capsule early in the morning. Which, by luck or alchemy, made me feel better - less anxiety, passing tachycardia, fewer night sweats and insomnia.

It was a relief, because I was not keen to get aboard the whole NHS/Private AF consultation, cardioversion, ablation, toxic drug, and medical incomprehension (and pessimism) cycle I had seen before.

This reinvigorated my search, both for a sympathetic thyroid medic and a source of T3.

I knew it was always going to be a struggle on the first count because my 'symptoms' are so widespread, marginal and eminently dismissible. And, pursuing the second, I found the cheapest and timeliest source of any sort of glandular proxy for T3 was - Dr Myhill.

Glandulars have been around for over a hundred years, indeed compounded natural desiccated thyroid (NDT) is a glandular, but a prescription one. Whereas, OTC glandulars occupy a deliberately ambivalent, and endangered, space between supplement and medicine. Not so prescriptive in composition as to warrant one, but close enough. A cynic might think pharmaceutical companies prefer to sell synthetic versions, for some reason.

Whereas, overseas sources of T3 seemed difficult, dodgy, changeable, of uncertain provenance, and beyond my ken (for those of you unacquainted with the seemingly global purge against natural thyroid medications, epidemic underdiagnosis and serial mistreatment of thyroid conditions, I recommend a look at the HealthUnlocked Thyroid section).

So, I just bought some Metavive II and started taking one and then two capsules a day (on rising and at noon). Which whether it's just gathering Spring or not, seemed to put me back in the saddle.

Coincidentally, I also belatedly started reading Dr Myhill's book, which is explicitly about doing for your own thyroid what your doctor won't. I had previously seen it was out in another post, (I had even bought a Kindle copy, and 'shelved' it. I knew it was there though!).

So, when I did eventually get around to reading it, led ineluctably to it again by online Wiki articles, from which it seems largely to derive (btw commendably you can see much of her advice for free), I found what I had done was exactly what she advocates (and clearly does routinely herself).

We all know that most of what we eat is bad for us. We just want to hear that it's all OK really. That any problem we have is due to something else, and the solution lies elsewhere.

So, now I am falling into line with her other prescriptions, which have lent more meaning and purpose to my own diet and lifestyle amendments.

You see, having once been a bit of a sceptic, looking for more dramatic solutions, I have returned to the 'fold'. I am even becoming a hand at making keto bread, which has more in common with brickmaking (albeit with walnuts in my case).

It may be no more than another passing 'epiphany', but it is at least an illuminating and healthy interlude, with a good deal of commonsense (and authoritative medicine) behind it.

I am a devotee of Patrick O'Brian. So, like his Dr Maturin, I find a certain irony in the way, despite, or because of, some incontrovertible advances in medical practice, we are also besotted with the Doctor's 'blue pill', and other panaceas and placebos. When at least part of the problem, and maybe the 'cure' for some of us, caught early enough, is at our own disposal.

Maybe it is just so hard that it is so easy. And not so easy.

Jafib53 profile image
Jafib53

The day I went to the doctor because my heart was feeling funny I was shown to be in Afib but they took blood that day and checked my thyroid. Called back next day and told I had hyperthyroidism. Was then in persistent Afib for 5 months until thyroid levels normalized and I was put on an anti-arrhythmic drug. Been in NSR since then (about a month). Still in discussions with doctor as to whether ablation is necessary or whether the thyroid clearing up means further Afib episodes less likely.

TeaFree profile image
TeaFree in reply toJafib53

Well, you got on the doc's radar, and you clearly had a thyroid issue that registered. That's a result.

Now the trick is to make sure you stay on top of it, and don't get neglected just because things are 'back in range' and the AF has stopped.

Questions to ask yourself are: did the thyroid tests extend to the full panel, not just TSH, but free T4 and T3, antibodies, ferritin, B12, vitamin D etc.? Where did the thyroid issue come from? Are your prescription drugs for AF compatible with any possible thyroid anomaly? What other systems may be out of whack?

I am no expert, and thyroid complaints can be tricky. It is not unusual for e.g. hypothyroidism to kick off with episodes of hyperthyroidism for instance. And, as I say, many of the standard NHS tests and ranges are for the birds. If you can shell out £70-odd and do a finger-prick, I would get your (pre-9am, fasting, no biotin for two weeks prior) results eye-balled by SlowDragon, or any one of the other administrators on the HealthUnlocked Thyroid site.

Can't do any harm (except to your finger), and may shed some timely light.

Jafib53 profile image
Jafib53 in reply toTeaFree

Thank you for the advice - very much appreciated as it certainly makes me think more carefully about my condition(s) going forward. Since diagnosis of hyperthyroidism 7 months ago I have seen my endocrinologist more than half a dozen times and had numerous blood tests, ultrasounds of throat and heart, EKG s etc. The blood tests have been for TSH, T3, T4, trab as well as showing results for kidney, liver and heart function, and lots of other things I can't recall off the top of my head, so I I think they are being quite comprehensive. You are right that hyperthyroidism sometimes presents before hypothyroidism and the thyroid is very complicated indeed! Despite all my tests we still don't actually know what has caused the hyperthyroidism in the first place. Negative for Graves disease and toxic nodules, no goitre, no swelling, no pain, so suspected painless thyroiditis, which usually happens after some kind of viral infection or similar. Well, as far as I know I haven't had any recent infections - not knowingly had Covid, and have not been ill for years. I did read that vaccines in general can sometimes cause thyroid issues so I suppose that is a possibility, although it was a full six months after my last booster that this happened (actually it was the day before I was due my next booster, but was told to put that off for a bit!). Still seeing my endocrinologist and my electrophysiologist and have appointments with both in early May, so have not been neglected so far.

I should mention that I live in Japan, so the system is a bit different here. Often people don't like to question doctors, but I am happy being a pest with lots of questions! And a lot of what I learn to ask about are from posts such as yours, so thank you! The system here does have its faults but so far I have found them to be quite thorough.

TeaFree profile image
TeaFree in reply toJafib53

From what little I have seen of Japan in a couple of visits, I am quite sure they are nothing if not thorough. However, it takes a while for anyone to grasp the nuances of thyroid issues. Which are certainly poorly diagnosed, measured, and treated in the UK, if reports on various websites are anything to go by. Well worth collating all your relevant test results at some stage and putting them on the thyroid site for comment. However, with any luck it may just have been a one-off.

Sixtyslidogirl profile image
Sixtyslidogirl

really interesting post. Shows the value of not giving up on yourself! Inspiring.

secondtry profile image
secondtry

Thank you TeaFree for taking so much trouble for others here. I am also 'quietly' pleased you have come to the same conclusions as below and my mantra since 2014.

'However, the thought to conjure with is that the reason the cause of lone AF is so elusive is just because it is systemic, across an exquisitely interlaced system of small dysfunctions that 'snowball', but defy any single medical specialty. And comprise the fabled AF 'substrate', which perhaps lies in something as mundane as struggling mitochondria.'

I was diagnosed with Lone PAF 10 years ago, prescribed Flecainide only, to stop it, which gave me the breathing space to change lifestyle (key areas mind & gut) which takes months/years. My theory also was that AF is 'the canary in the mine' and systemic, so I threw everything at it and have had virtually no AF episodes since 🤞. I am now 70 and active.

TeaFree profile image
TeaFree in reply tosecondtry

Glad to find another fellow spirit trying to put it all together, and take 'the path least travelled' here, secondtry! Medics are only now waking up to the gut-brain link (to which I would add the vagus nerve, which connects them). It is all too easy to get into a vicious circle of low stomach acid, poor digestion/absorption, leaky gut, immune sensitivity, mitochondrial starvation etc., with thyroid hormones both victim and perpetrator, and AF the 'canary', as you say. Just one potential nasty on that route, if not corrected.

It would be interesting to hear about your own regimen in a separate post.

CDreamer profile image
CDreamer

You just told the whole of my narrative - slight differences in diseases and conditions and a few details along the way, but same story genre.

Dr Myhill’s book was one of the first people I read back in 2013, sadly she suffered greatly after publishing her website as do many doctors who speak out against the integrated perspective. I notice from her website that her books are now open again to new patients. I tried desperately to get an appointment back in 2013 but she was so inundated she closed her books to new patients and then of course she had to defend herself against all the accusations of malpractice for making such outrageous suggestions that it might be something to do with our nutrition….. or lack of.

Love your Whac-a-Mole description of specialist medicine - why oh why?! Do they wear blinkers?

A very refreshing post and thank you for reinvigorating my interest and banishing my apathy about this forum and never apologise for speaking your truth.

Thank you.

TeaFree profile image
TeaFree in reply toCDreamer

Yes, CDreamer, I think the prevailing "Good news, Sir/Madam. It's serious" psychology has a lot to answer for. As well as the point-and-shoot prescriptions ("Elevated cholesterol? Take this statin"). Biochemistry and nutrition are not GP strong points, and even a bit infra dig.

Still, I was delighted and amused to read that Dr Myhill actually has a T-shirt with "38-0" on it. Celebrating the sum of her acquittals before the GMC. As a subject access disclosure attests, one opposing barrister lamented that: 'The trouble is Dr Myhill seems not to have done any patient harm, and none of them will testify against her'. We could all wish for such testimony.

Vonnegut profile image
Vonnegut

I just managed to get through your ramblings and extracted the odd point of interest - my daughter was told she had Giberts syndrome some years back though she has continued to be a fit healthy active young woman and the thyroid stuff seemed of interest too. Every now and then a blood test indicates I have “high” cholesterol though I have never been overweight etc, and after taking red yeast rice tablets daily for a month or so, the follow up blood test always gives a normal result for cholesterol. I’ve taken to using the spread that purports to reduce cholesterol as it contains plant sterols whatever they are.

TeaFree profile image
TeaFree in reply toVonnegut

Imagine my delight that some of my ramblings piqued your interest.

Boudica_HD profile image
Boudica_HD

Thank you for taking the time to write this, Teafree. It was so interesting and helpful. And well done for working your way through the cause and effect labyrinth to get to a better AF place. Great post.

Dudtbin profile image
Dudtbin

golly i feel so lucky to have the medics we have here !

Lizty profile image
Lizty

Really interesting and it goes to show that lone Afib is really just a life=style warning. For me, it has been realising that when I push my body to keep up with what is happening in my brain.... hyperfocus mostly ....my body will complain. It will suggest 'slow down to a normal well paced, nutritious lifestyle with fewer adrenalin highs!'

[And drink loads of water too.] As my excellent EP said to me.... everyone is different.

Vonnegut profile image
Vonnegut in reply toLizty

Very impressed that your EP has realised that everyone is different! Sadly, it is rather rare in many members of the medical profession!

irene75359 profile image
irene75359

This is such an interesting post, and thank you so much for taking the time to write it.

Pigleywigley profile image
Pigleywigley

Very interesting post. Thank you. I too started with PAF after starting running in my 40s! Diagnosed 3 years ago. I too believe I have had episodes in the past. I do have an abnormal heart structure & had a closure of ASD in my 20s. They say my PAF is due to the structure. Interestingly I have had no episodes since last June. Round the time I gave up running & started drinking 3 litres of water a day!

I am a fit 50 year old, swim, walk, yoga now. My nutrition is 80% good but I’ve let things slip recently so thanks for the reminder!

I was scheduled for a surgical ablation last Christmas that went on hold (I was asymptomatic) so fortunately the EP said why do it now 🤷🏼‍♀️ some may argue the opposite course of action.

I have just been told I need to add a statin to my meds. I have been reluctant and have not yet. But following an article I read yesterday regarding the AF study & statins reducing stroke risk up to 47% I decided to take them ‘reluctantly’. I’m not one for pils but too nervous to risk stroke.

Thanks again x

TeaFree profile image
TeaFree in reply toPigleywigley

Yes, thank you for your response. The carb limit for ketosis is certainly an issue! And I think we would all sooner not rattle from the tablets that get dispensed (with not much thought about how they interact, not least with us). Statins are a classic case. Best advice seems to be at least to supplement with ubiquinol, 100mg daily. Having seen the medical wisdom on anticoagulation v bleeding risk flip-flop in a decade, it would be nice to see a little more of that custom medicine we are always hearing about, rather than the utilitarian one-size approach. It's getting so I would almost prefer to be treated by a well-programmed AI bot.

I do miss the running too. But long walks are lower impact, and you get to enjoy the ride.

Funnily enough, I only took up running (on treadmills at first) because my previous daily exercise had been swimming, and when I arrived in the Gulf, whatever the question was the answer was 43 degrees - air, pool, sea temp were all the same! And no refrigerated pools.

Pigleywigley profile image
Pigleywigley in reply toTeaFree

ah I love my swimming 🏊‍♀️ my favourite, although did love a run with the dog - she’s equally happy to walk.

I’m signed up for the Zoe study, Prof Tim Spectres work. The tests identify how your body processes and responds to fats/sugars, amongst other things. It’s personalised nutrition based on what the tests show. I know I need to dig deeper into my nutrition and watch the alcohol (having had a couple of wines on a friends birthday yesterday and feeling crappy!).

I will look up upiquinol any signposts to good suppliers?

Many thanks 😊

TeaFree profile image
TeaFree in reply toPigleywigley

I previously used this: oxfordvitality.co.uk/produc....

But persuaded myself that it may be better to take the activated Kaneka-QH, which I have been using lately: amazon.co.uk/ubiquinol-100m....

It's twice the price though. And I'm not sure it makes a lot of difference.

Co-Q10 is the most important antioxidant inside mitochondria, and vital to oxidative phosphorylation. Consequently, people with low levels of Co-Q10 have low levels of energy.

With D-Ribose and L-Carnitine, Co-Q10 is one of the common trio of supplements often cited (e.g. Sinatra amazon.co.uk/Sinatra-Soluti... for cardiovascular health. And there is a view that statin therapy will deplete Co-Q10. Which may explain myopathy associated with it.

Anyone who has already been floxed will be very unhappy about this prospect.

However, for fair disclosure, the prevailing medical view on statins is here: thelancet.com/journals/lanc.... And pretty stark.

Nonetheless, despite my TIA (there is nothing obviously transient about a TIA when you are having one, I do assure you!), I have elected not to take the statins which were the inevitable response to me having elevated cholesterol. This is because its prescription was a formulaic, Whac-A-Mole response in the early hours of the morning from people who never even examined me, not a very considered scrip.

I may come to rue it. However, my total cholesterol is not very elevated (5.6 mmol/L), demonstrates a favourable LDL/HDL ratio (3.4/1.9 mmol/L), and is pretty much where it has been for over 30 years, if not lower.

Plus, I have Gilbert's Syndrome, a common liver disorder which raises bilirubin, itself a powerful antioxidant (the body is clever in compensating like that). Hyperbilirubinemia is associated with a significant degree of protection against CAD.

Moreover, the thrust of my original post is that it is entirely possible that my AF is down to a hypothyroid condition that is affecting my T3 conversion and making all my organs go slow - including my liver's cytochrome P450 phase II detox.

Time was, before TSH testing became the 'litmus test', that elevated cholesterol alone would intimate suspicion of hypothyroidism. Ample thyroid hormone tends to reduce cholesterol. And sunlight acts on cholesterol to produce vitamin D. There is even a view that elevated cholesterol is a symptom not a cause of arterial disease, and the relationship between thyroid hormones, vitamin D, and CV risk is an active field of research: ncbi.nlm.nih.gov/pmc/articl....

Plus, my TIA was due to a clot (not sclerosis per se) probably thrown off by my LA after spontaneously cardioverting at home from a prolonged bout of AF.

And as I strongly suspect the apixaban I was placed on following my TIA (I had previously requested a DOAC as a precaution, but was denied it due to low CHADS) probably resulted in a very severe bout of UTI (this is a known side-effect and contraindication btw), I figured I would give yet more drugs a miss and try to sort myself out first.

I subsequently managed to persuade my neurologist to prescribe me dabigatran (Pradaxa), not because I like taking two horse tablets a day but because, though you NEVER want to take it on an empty stomach (trust me!), I had seen research in which there was some evidence it contributed to constructive heart remodelling to combat AF. And otherwise it had a better side-effect profile for me.

Pigleywigley profile image
Pigleywigley in reply toTeaFree

thanks

My cholesterol is 4.2

HDL 1.22 ratio 3.4

The lancet read is a tad alarming 😳

It’s just a flipping minefield

I’m going to try a CoQ10 and see where the Zoe study gets me.

May you stay fit and well. Rachel 😊

Auriculaire profile image
Auriculaire in reply toPigleywigley

I would take the article with a bucket load of salt. Both CDreamer and I tried to find the study behind the article to look at the data - without success. Nor could CD find anything much about the person who presented the study at the ESC conference.The % s reported would be for relative risk reduction . This is a statistical trick used by researchers to make drugs look more effective than they really are . When absolute risk reduction is shown often the benefit is not even statistically significant. What reason were you given for taking a statin?

Pigleywigley profile image
Pigleywigley in reply toAuriculaire

interesting. My Q Risk score!

Auriculaire profile image
Auriculaire in reply toPigleywigley

Another scam. It has been updated recently so that more people are eligible for statins! Did you know that studies have shown that in the real world it massively overestimated actual disease - - and that was for the old algorithm. Large epidemiological studies done in Scandinavia have shown that older people particularly women with so called elevated cholesterol live longer and have less disease (including cardiovascular disease )than those with the magic below 5 numbers. It is not a good idea to reduce cholesterol as we age. It protects us against infections and cancer. Malcolm Kendrick's website has a lot of interesting stuff on why this mania reducing cholesterol and taking statins is misguided. He has also written several books about this. One called "Doctoring Data " explains how statistical tricks are used to push people into taking drugs they don't need.

Pigleywigley profile image
Pigleywigley in reply toAuriculaire

well I was starting them yesterday, they have been sat in my cupboard 3 months. I didn’t take it. Not because you or anyone else have influenced this, I am an adult and I’m currently listening to my gut. My gut says, let’s go the holistic way.

My problem is I work for nhs surrounded by medics (GPs) who tell me to take them.

I also take bisoprolol that I know makes me feel dreadful. I am going to stop this too (which I have previously agreed with cardiologist). The cardiologist said I will need to take apixaban for life (even if they do ablate) as he said abnormal heart structure so should anyway. It’s not a decision I particularly like but I’m living with.

I love the depths of info you guys go in to around this subject. Thank you

Auriculaire profile image
Auriculaire in reply toPigleywigley

Actually when I was writing the post I intended to say "listen to your gut" but it slipped my mind and got left out! Bisoprolol made me feel awful too. I now take a very small dose of Nebivolol but I would like to stop. I have problems with Apixaban too. I am very sensitive to drugs in general. Luckily I have a GP and cardiologist who do not seem to take any notice of current trends. It is maybe that they don't have this Q Risk assessment here in France. I'm pretty sure I did it online some time ago and my risk put me in the category for taking statins.

Ppiman profile image
Ppiman

That was good to read - and especially a post that is so beautifully crafted! I've often considered thyroid issues as the cause of some of my woes and it's clear that in the UK, at least, thyroid levels are not treated in the way some other countries' health system do, but I drew a blank.

I am lucky, overall, however, to have had a fairly good experience of the medical establishment and pharmaceutical industry so I don't have cause for quite your level of scepticism, although I can fully understand it. My trust has certainly been tested often enough and ever more so these days with our struggling NHS.

Steve

TeaFree profile image
TeaFree in reply toPpiman

Thank you! Some of my family were/are medics... so there's that. Plus, I spent a time analysing the pharmaceutical industry, which is also one of those exercises, like watching sausage being made, not calculated to make a favourable impression. However, I think it's just the dogmatism, in a field in which all practice is manifestly contingent, and where systems are complex and solutions need to be joined-up, that gets my goat. I would just like to see a little more constructive, open-minded, preventative, dialogue in helping patients help themselves. Rather than the frequent, expedient 'nanny knows best', often back-protecting and time/cost-saving formulas, whose patent fallibility simply sets the system up for cynicism. The trouble, as always, is that really good risk managers seldom receive plaudits.

Personally, however, I am always all too conscious that I may have to come crawling back, an oh so contrite little bear, for that inevitable cardioversion or ablation. Just like to delay it.

Ppiman profile image
Ppiman in reply toTeaFree

Well said. I would only say that my own experience of medics, the industry and of patients (not as a doctor, of course) is that the "nanny" approach you describe is often taken because it's quicker (and time is almost always short) and - it's hard to put this - but many patients seem to lack the willingness or wherewithal to explain their problems or do much more than pop a pill to solve them. The otherwise pretty awful TV programme "GPs Behind Closed Doors" does show quite well just how little some people will do for themselves in terms of preventive medicine - things like drinking less, losing weight, stopping smoking and similar.

Steve

TeaFree profile image
TeaFree in reply toPpiman

Yes, Steve, I think you've put your finger on it. We're encouraged to think that we can have someone else sort us out, like they were laying our patio. As if we could ever send someone out to have lunch for us! And, as the system also lacks resources (there can never be enough!), stricter triage means that nothing is more certain than that ever more issues will become serious before they should. Evoking more triage. It's 'the tragedy of the commons'. But at least, on a site like this, people who have the urge can inform themselves and others. Medicine, like any complex field is inevitably siloed. So there is real value sometimes in thinking out of the box, especially for systemic problems that defy resolution simply because they are not so easily 'boxed'.

Ppiman profile image
Ppiman in reply toTeaFree

My mother said just that many years ago, essentially that the Welfare State was never properly able to help those who truly needed it because, as you so aptly put it, those that had the nous to what they didn’t really need and put self interest before compassion for others.

Steve

Auriculaire profile image
Auriculaire

Thank you for this interesting post. I am hypothyroid and a fellow victim of Cipro. But I am convinced that it was my first exposure to Cipro 30+ years ago that damaged my thyroid. Along with living in a city with fluoridated water. I did quite well for several years. on an NDT / Levothyroxine combo titrated to the average output of an undiseased thyroid . I imported the NDT from a very reliable online pharmacy in California. Then I was exposed to Cipro again twice (the second time was when I actually found out about FQs and being floxed and connected the dots with myriad health problems I had had since that first exposure). Both times I went into afib but the first time all had returned to normal by the time I saw my GP the next day. The second time I believe it was again a delayed reaction to just one Cipro capsule but was much more violent and it was off to hospital in an ambulance. My TSH was found to be very low and despite my freeTs being well within range "overmedication " was blamed and the cardiologist pooh poohed any role for Cipro. Since then I have been on T4 only with big fluctuations in TSH. I have lots of tendon issues , inflammation in rib cartilage and have recently had both hips replaced due to no cartilage left. Cipro - the cursed gift that keeps on giving.

TeaFree profile image
TeaFree in reply toAuriculaire

I'm very sorry indeed to hear about your experience with Cipro.

After a month on a gram a day of the stuff myself in 2006, I went from running 5-8km a day to being barely able to get down stairs. My Achilles tendons tightened up like piano wire. And I was so mind-fogged I even locked myself out of my own home.

Medics don't like to talk about such 'learning experiences'. Flecainide (Tambocor) is another drug, familiar here, with a chequered past on that front. And it's another one with 'F' in the name, which anyone with a thyroid issue should pay heed to. Like the toxic iodine in Amiodarone, any free fluoride (which has no proper place at all in the human body) is potentially harmful to the thyroid. Not least because it displaces heavier iodine, which is vital, and in which much of the population is deficient. And Cipro clearly has an affinity for cartilage.

I haven't liked to think that Cipro had a part in the etiology of my underperforming thyroid hormone conversion and/or AF, but it certainly did predate my formal AF diagnosis by a couple of years, and fits.

I have had my share of costochondritis and odd sterno-clavicular joint problems. And I'm not sure, having always been relatively AF asymptomatic and exercise tolerant during episodes, that I could have distinguished any early AF episodes from all the other morbidity at the time. Which is not to say that it did not occur, and leave its mark.

As recurrent UTIs are a sign of hypothyroidism and I had Cipro for them and prostatitis, it is not impossible I had a latent thyroid condition which only deteriorated and predisposed me to AF. Who knows?

One thing is for sure, there will be at least as marked a lack of curiosity or medical enthusiasm to pursue that thesis as the notion that mercury toxicity has any role!

I think iatrogenic is the euphemistic Ancient Greek medical term for these sort of problems.

And the truth is that all these, and probably a cocktail of other environmental toxins, play a part. Like putting sand in a well-honed engine. I just do not think we have the knowledge to appreciate quite what we are doing to ourselves. Dark Waters indeed.

Auriculaire profile image
Auriculaire in reply toTeaFree

I find the sternum pain the worst aspect of costochondritis. The pain in the rest of the ribs is a drag but I have learnt to live with it- even the horrible and extremely painful sensation of the ribs crossing when bending over sometimes. I am not sure they actually do cross but it feels like it! But at least it doesn't make you think "heart attack? " like the sternum pain can ! One month on Cipro ( presumably for prostatitis?) is bad. Docs tend to cite long QR interval as it is a well recognised side effect of FQs but there are lots of poor sods on floxie forums whose FQ exposure has resulted in other arrythmias.

TeaFree profile image
TeaFree in reply toAuriculaire

Yes, the whole floxing scandal is appalling. And it partly stems from insufficient grasp among medics that the reason fluoride is so effective in the human body is... it has no place there. It didn't help in my case that the sort of mega doses required to shift stubborn UTI and prostatitis were also administered in tandem with ibuprofen.

As I say, we should all pay as close attention to what's in the stuff we are prescribed as in what's put on the plate in front of us.

I had not wanted to think of Cipro as a cause for my problems because there is not a lot to be done about it, chronically anyway.

What's interesting though is that FQs not unnaturally nuke mitochondria, because mitochondria are bacteria (which an improbable freak accident slipped into a cell, where they became a 'battery pack' and powered a whole new evolutionary thing). Arguably the biggest, and most unlikely, deal (in every sense) in all natural history.

Not coincidentally, therefore, getting mitochondria on the road to recovery is no small part of both our thyroid and AF journeys. As well as in alleviating floxing problems. Because mitochondria are what make us go. They are the target of T3, which is the active thyroid hormone. Nowhere more so than in that most vital clump of muscle we have.

Hence, too, the common cause with Dr Myhill's own journey, which started with neglected ME, fibromyalgia and CFS patients. Who were often dismissed as lazy slackers and told to pull themselves together and get over it (at least until not a few front-line medics got long covid and are now rethinking the wisdom of vaccinations and the nature of recurrent viral immune assault). All these share many of the same symptoms of autoimmune hypothyroidism and mitochonrial dysfunction (and being acutely floxed). Because the common denominators are the same.

I came across authoritative research a couple of years ago from the Radcliffe in Oxford, which came to the unwelcome conclusion that AF was basically going to be refractory to any treatment, because it stemmed from a profound defect in the muscle of the heart among sufferers that was basically dyed in the wool and intractable. So, just 'anticoagulant up', resign yourself to the fact that your substrate is immutable, ablations will not eliminate stroke risk, they just knock off that 'bell' for a spell, but will eventually fail anyway.

It set me back a bit! But now I am not so sure. I think we can at least try to nurture our mitochondria to arrest the rate of decline, if not set the clock back, by addressing that 'substrate'.

Inside cells, it is important to appreciate, is terra incognita to routine medicine. We tend to only know what's going on there from how we feel. Medics most often just test blood and serum. And blood has no mitochondria, else it would gobble up all the oxygen way before it got where it was supposed to go. Moreover, outside an ICU, the body will bend over backwards to keep things in 'normal ranges' in blood and serum. So, checking those may be like 'judging the meat and the pudding just by their sauce'. We are deluding ourselves.

I think that's the fundamental flaw in thyroid diagnosis and treatment. And if the original point of my post has any legs, it may also be a missing link in, at least lone, AF therapy. As well as the common denominator with those of us who got floxed.

Incidentally, particularly the dental profession (the guys who brought us mercury amalgam - from whence 'quacks' from the German for quicksilver - and excessive X-rays, not far from the thyroid) have widely promoted the 'benefits' of fluoride. And it's cheap and needs dumping, So what's not to like? But the argument does not bear close examination, as you are only too aware and 'forever chemicals attest'..

Auriculaire profile image
Auriculaire in reply toTeaFree

You raise a lot of pertinent issues - especially the one about mitochondria. Unfortunately the research on the evolution of mitochondria from bacteria was either in it's infancy or not even started when the first FQs were developed. Before that there was their predecessor - nalidixic acid- whose nasty side effects fluorine addition amplifed. I had a lot of UTIs when in my early 20s and was probably prescribed this several times. I would bet that quite a lot of your health problems are down to the month on high dose Cipro. When I first found out about floxing I spent a lot of time on floxie forums and a large percentage of the men had been floxed with long term "treatment" for prostatitis. Giving with an NSAID - dynamite! With my second exposure to Cipro I was prescribed a steroid alongside. I woke up one morning with the sensation that my body did not exist -that there was no barrier between me and my surroundings. It was terrifying and luckily did not last long.

It is now nearly 8 years since my last exposure and that was only one capsule. I still get relapses but they are much milder and more spaced out. The tendons have had it though and age does not help. But many of the other symptoms have subsided .

There is a very interesting website written by a woman whose thyroid was badly damaged by floxing. Unfortunately I can't remember the name of it. Also Dr John C Lowe wrote an interesting book "The Metabolic Treatment of Fibromyalgia " in which he argues that fibromyalgia is caused by lack of T3.

EngMac profile image
EngMac

The other day I heard a “functional medicine doctor” (one who investigates what is happening in the total body before deciding on treatment”) say he learned in medical school and for years in practice to “name it” then “blame it” and then”tame it” with something that is “anti” , inhibited”, “blockers” etc. and with very little focus on positives that help the body function better using the natural things in the world on which it was designed to use, food, exercise, sleep, etc. Doctors are doing a lot of research about food and how it can cure disease.

TeaFree profile image
TeaFree

Well, that has certainly been the way of things in BigPharma, with antihistamines, beta-blockers, proton pump inhibitors or histamine2-receptor antagonists.

Generally, it is easier to put a spanner in, I suppose.

I'm exploring the thesis that I might, belatedly, focus on trying to get the fuel right first, then worry about the other functions.

Certainly worked like a charm on an old car of mine. I had been fiddling with the idle speed, plugs, venturi, distributor, air intake etc.. You name it. And all the time the petrol was flat.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Such a story so I will condense mine for your attention as I did yours.

Early 2019 No meds except B12 via Solgar Gold Top 1000ug via sublingual (under tongue). Then was put on Losartin for elevated hypertension.

Stopped that as lots of protein in urine. Also on various antibiotics for vaginal bacteria.

But August a 3-D Scan showed TVT Johnson & Johnson tape well moved over to V.

Worried that our ACC declined for removal. Then public with my Specialist Gynae-urologist was declined by nearest DHB Hospital to do it.

September I had a stroke. With AF and then my Carotid Arteries scan showed Papillary cancer - no lump/odd thyroid test etc.

So Feb 2020 had it out with 12 lymphs which showed 2 infected.

I have found that mushrooms help bacteria in V. So my diet includes them and if you 'sun' them, they will give Vit D as well.

So now I take Synthroid 125mg daily early. (I take mine under tongue too) There is a Synthroid Na which is not available in nZ here.

I refused RAI post-operation, Suppression Age & Heart Condition and Low Risk etc.

I keep my TSH 1.0-2.0 Surgeon's guidance from USA Top Surgeon Thyroid Cancer. My T3 is 3.9-4.0.

AF I take BB Blocks Adrenaline Bisoprolol best for AFers.AM 2.5mg.

I take 18 mths now CCB block Calcium which relaxes heart muscle etc. Diltiazem 120mg.

Now keeping really well and exertion improving daily.

120-123/69. 62-69 H/R Day. Always 47 avge at night H/R.

Reading through your story it alerts to much body stress in exercising! Can you cut it down?

And bits of other things like stress, taking other supplements. At your age improve your B12 mine should be between 500-600. Keep Vit D up.

Eat a banana daily morning on your grain oats. Harroways put out organic whole grain oats. Lowers BP.

Olive oil, anti inflammatory vegs and fruits helpful as inflammatory body makes pointer towards AF.

B12 should be taken via blood - injection or sublingual only.

I don't have gall bladder as completely disintegrated! Complained from age 4. Finally arguing about it the wee balls were blood. I was 50 when DHB removed it and surgeon said "you have 5 portal holes so that he could peel off the bits!

You will get there...

Take care,

JOY 74. (NZ)

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