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!).