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AF Association
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Hi everyone, early onset AF and changes in condition. Embarrassingly anxious 😟

Hi everyone,

It’s nice to find this forum - but also unfortunate to see so many with AF! I was diagnosed with paroxysmal AF when I was 36 not long after my Daughter’s birth. I had months of “its anxiety/PND/tiredness” before an echo revealed a very slightly floppy mitral valve with mild regurge; this is unconnected apparently. A monitor picked up initial pac’s and odd pvc’s, short runs of SVT and only had very short runs of between 5-40 seconds of rapid AF. This is how it’s remained for 15 years. When my vitamin D dropped extremely low last year (which was missed for months until I couldn’t do anything) I noticed palps getting worse. They got better after Vit D deficiency was treated. However in the last month I’ve had three episodes of rapid AF lasting around 4 hours and A&E letting me home when it stopped. The only thing that’s been found is my thyroid is slightly off, TSH levels 2.59 but my T4 level is low indicating hypo rather than hyper. I’ve been to my cardiologist today at Harefield and been given bisoprolol 1.2mg. He’s also referring me to Dr Tom Wong. I’ve read the really good and the bad with ablation. Apologies for the essay, however I wondered if anyone else’s AF had suddenly changed out of the blue, and if so, was any underlying condition investigated and found to be a contributing factor? Also I didn’t get on with propanalol (felt tired and had a tight chest - I’m not asthmatic) so a bit anxious about meds. Is bisoprolol a pretty reliable one for AF? I’m already on 2 hefty meds for fibromyalgia, pain and muscle relaxant which I’m told won’t be an issue. Apart from feeling really rough and tired, I have a ridiculous amount of anxiety about this now and I’m ashamed to say I need to get a grip. Wishing you all well, Jules

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Hi Jules. I will try and gte back to you shortly but dinner is ready. I must say first that some muscle relaxants and pain killers such as NSAIDs have been linked to creation of AF so let us know what you are on.

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Thank you Bob. I’m on diazepam 5mg PRN up to three times daily and cocodamol PRN for Fibromyalgia symptoms. I haven’t taken a NSAID since 2012. I was prescribed them for migraines, all they did was cause stomach trouble. I don’t drink at all. I’ve been on coated baby aspirin for 8 years and they don’t seem to want to change that as yet. I’m vegan and I’m trying to eat a non-inflammatory diet, low salt, low gluten. Got some linseed for omega 3. Pleased I found this site!

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I would suggest you see an NHS dietician because the words 'low vitamin D' 'vegan' 'low gluten' and 'low salt' suggest to me you are on a DIY diet and I know a vegan diet needs to be very strictly structured to ensure you have balanced nutrition.

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Thanks for the reply Buffafly. I’ve been to a nutritionist and the one thing I’ve got sorted out is my diet; it’s very balanced. The low Vit D was found Mar 16 after being ill. Fibro was diagnosed just afterwards. Levels are perfect since July 16 and have them checked along with B12, B9, iron etc - all good. Though I agree with you, I’ve met a couple of people who have dived in to a vegan diet who’ve found it difficult to get the right balance of nutrients. Particularly proteins which are crucial.

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Did your fibromyalgia start by any chance after taking a fluoroquinolone antibiotic such as Ciprofloxacin or Levofloxacin? I ask this because a delayed reaction to these antibiotics is common and results in the patient never making the connection between the drug and the subsequent development of musculoskeletal problems such as joint and muscle pain and widespread tendonitis which are then often diagnosed as fibromyalgia. This class of antibiotics can also provoke heart arrythmias such as afib and even worse QT elongation which can result in fatal torsades de pointes.

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Hi Auriculaire, I believe mine was triggered by Epstein Barr and a very low vitamin D level. I was fine before this. I haven’t been on those antibiotics but that’s interesting information for people that have, and a little worrying!

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Unfortunately it is a growing problem and one that has been scandalously brushed under the carpet for nearly 3 decades!!! by the medical profession. At last regulatory bodies such as tha FDA and EMA are starting to look at the problem - surrise surprise now that the drugs are off patent. The reaction can cause a syndrome of ill health very similar to fibromyalgia which is now recognised by the FDA as Fluoroquinolone Associated Disability Syndrome. Most people cannot remember the name of an antibiotic they took several years ago so the only way to be sure is to look through medical records which is not always easy. People have been put into wheelchairs with only one or two pills. Others have taken course after course until their tolerance is reached and the reaction hits. Others have a slow build up of disabling symptoms that often are never associated with the drugs but chalked up to fibro or CFS or even diagnosed with a sort of ALS. They are very likely a large contributing factor in Gulf War Syndrome as the troops were given Cipro for over a month as prophylaxis against anthrax. Yes these drugs were developed to combat serious infections like anthrax and plague but there is no money in that so the drug companies pushed them to treat sinusitis and UTI and even as a preventative for traveller's diarrhoea while hiding their devastating side effects. Evil or what?

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That’s horrific! 😱 Truly awful

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Please look at the posts about Magnesium supplements. Its the only thing that has really worked for me. Even if you are not flagged as deficient.

Solgar mag cit from Amazon. Has worked after 18 years sick sinus, pacemaker , ablations, drugs did nothing much.

My fibromyalgia and back pain also much improved as a bonus.

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Icanae thank you - sorry you’ve had the pain that is fibromyalgia too, but pleased you’ve had some relief. I want to get off the pain meds ideally. Because I didn’t want to add to my supplements orally I’ve just recently started to use a topical magnesium chloride spray after doing some research on absorption. I saw that Mag Citrate was also very well-absorbed, so will certainly adjust things and have a go. Can I ask, how much do you take per day and do you divide the dose? Much appreciated and wish you well.

Ps. There’s so much good info on here I’m getting through it :)

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Dear Jules. I am so sorry to hear of your heart problems. Welcome to the forum. We may not be able to help cure physical problems but we are a shoulder to cry on and an ear to listen and empathise! Dr Tom Wong is marvellous. I am sure he will reassure you. He is one of a few EPs at Harefield/Royal Brompton who started out trying to solve AF problems in the early days of ablation procedures at St Marys Hospital, Paddington. Your heart will be in good hands!! Anne

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Thank you Anne! My consultant told me to google Dr Wong, because as soon as he mentioned the idea my blood pressure shot up lol. I’ve found this site very helpful indeed so far :) best wishes, Jules

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My understanding was that thyroid problems - both hyper and hypo - can be an underlying condition which causes palpitations and AF. Treated arrythmias often disappear. Look on HU Thyroid Uk for information.

It might also be useful for you to go to the AFA website and download all the patient information on AF and treatments including ablation.

The episodes you describe do not seem very frequent or last very long but unfortunately anxiety can exacerbate AF and tends to be it’s bedfellow. Therefore I would consider carefully if ablation would help you right now, I am a fan and have had 2 although I had complications and the first made things a lot worse and the second exacerbated the autoimmune but gave me over 2 years AF free and episodes now are fewer and much more manageable. I was having 3-72 hours of fast AF about 3 times a week and not much break between episodes. AF can be progressive.

I think in your position I would look at thyroid a little more carefully to see if management helped and possibly returning to see a nutritionist and having bloods (systemic inflammation indicators) & GI test (nutritional absorption) before considering ablation. I now take no meds for AF other than anticoagulation as they are contraindicated with Myasthenia ( Autoimmune Disease).

If you can treat the anxiety with anything that helps - Mindfulness, Meditation, Yoga,or just doing things you enjoy (endorphin effect - feel good hormone helps counter the cortisol from anxiety) it will help your general wellbeing and AF. Distraction works so anything that interests and absorbs you.

Fibro is a pretty disabling condition. I undertook HBOT Hyperbaric Oxygen Therapy and met quite a few people with Fibromyalgia who were helped as was I but I stopped as the AF got worse and just went on to O2 without pressure. My EP didn’t think it would have any effect on the AF and OK’d it before I started and you have to have a doctor to sign a disclaimer that you are ok to comence treatment.

Managing more than one condition becomes complicated doesn’t it?

Very best wishes CD,

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Thank you CD. That treatment sounds interesting, I’ve not heard of it. I’m a holistic therapist and always looking out for ways to ‘decompress’, because I have had a lot of major stress in one go lately - I didn’t think I felt it bizarrely and obviously my heart did! My ESR AND C-Reactive Protein were raised at last weeks blood test, not spectacularly so at all, at 28 and 8 respectively. I’m convinced my thyroid is not helping this, it’s maybe not odd the AF worsening should coincide with a drop in T4 levels and other symptoms not previously fibro-related. Thank you for the bloods info much appreciated. Having an autoimmune illness you’ll understand I’m sure you try to push yourself sometimes when you’re really not up to it. Also the frustration of relaying symptoms to a GP. I’ve had to fight like mad to get to get heard. Yes it really does become complicated with two issues, I emphasise with you and sorry you’ve had a rough time. I hope you feel at your very best soon. Best wishes, Jules

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My issue was not absorbing short chain fatty acids - I now take Ca-D-Glucarate Which blocks the enzyme causing the non absorbtion.

I recently came across an App & FB community called Calm which I’ve found very helpful & they have specific sessions for anxiety. I’ve also found that improving vagal tone helps - greatly! Google if you are not already aware of the ANS connection. x

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Yes I’m a member of the Calm community too, love it! I’ll do some more research on vagal tone - thank you. With fibro/autoimmune illnesses you feel your ANS is super sensitive don’t you... I wake up and turn over - I break out in a sweat. Blood sugar drops slightly - sweat, clammy and feel faint. I’m not diabetic. I looked at adrenal fatigue too, I try to educate myself as much as possible and have to say the knowledge on here is amazing. Holistically-speaking I suppose I tend to look for the root cause. If I think logically, I can pin a health change since getting Epstein-Barr. I can tell you’re an avid investigator too! x

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I think sometimes you need to be! x

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I know how you feel with the blood sugar drops. I get the same symptoms but unfortunately no hunger signs before hand so it can happen very rapidly. I am not diabetic but I bought a glucose moniter and surprisingly my sugar was not really that low - just too low for me personally.

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They are incredibly annoying I feel for you :( That is interesting - too low for you - I hadn’t looked at it from that perspective

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Hi Jules. At the time of my first AF episode my thryroid levels indicated slightly underactive thyroid, but I was told that they wouldn't trest it because AF is a result of an overactive thyroid and medication would increase the likelyhood of further AF.

Of course the thyroid issue worsened over time and I noe take thyroxine and this has helped significantly with the AF... however, my levels are very finely balanced and if I do over- medicate I have more AF problems.

It took me a lot of research but I finally found a study which showed that both hypo- and hyper-thyroidism triggers AF for different people, and that the firmly held belief of most doctors and cardiologists that only an overactive thyroid will cause AF are outdated.

I hope you are able to find some approach that works for you, but don't take advice about thyroxine as necessarily accurate.

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Hi Minimalist, thanks for that reply - that’s exactly what I’ve been told now: “we’re concerned about giving you levothyroxine because it could worsen your AF, but also your thyroid could be causing it to worsen, but clearly your thyroid is starting to go on the blink”. You must’ve felt very frustrated...

May I ask were you medicated for AF then and did docs start you on a very small dose of thyroxine to begin with? Also how low did your T4 levels get before they said enough is enough? I’m glad you’ve done the research too, as I said previously I feel I have to go armed with info, without undermining the docs. I was fortunate enough to have one in hospital who’s young wife has AF that confirmed mild hypothyroidism can cause/worsen existing AF. I’m seeing so many on here really researching themselves. Brilliant.

Wishing you well, Jules

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I guessed you'd been told the same. That's why I responded.

I was untreated for about 7 years. Not just for hypothyroid but also for AF, despite a couple of A&E overnights and an 8 hour AF episode every couple of months. I think I'm grateful for the neglect, because I am at the point after 11 years that a lot of people on the forum with lesser symptoms are at in week 1. It may be that I've lost out on effective treatment, but I might have staved off some of the acceleration of symptoms that medical intervention can sometimes seem to bring...

Anyway, I started on 25 mcg thyroxine when my T4 level was way out and worked up over a couple of months I think to 100. I should be on 125mcg to fall within an average range, but that does kick me into AF so I keep being told I'm 'undermedicated'. I also discovered that the 'average' range is a dubious concept anyway as it was derived from a skewed sample, so a decent endocrynologist would aim for your personal optimum, regardless of supposed averages.

So in terms of AF and thyroid my treatment is at an early stage despite 11 years of symptoms. Hopefully my minimalist approach is a good one, though many ablationists would argue with that and they could well be right. It's all down to your personal perspective. So make sure you know what you're talking about because ultimately it's down to you :-) Best wishes.

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Thank for the info, it's helpful indeed. I understand your perspective on treatment for the thyroid completely. Doc's may consider you under medicated but how you actually feel is a good indicator of how your body is coping - I would no doubt do the same as you. 'Standard' doses of medications are often too much for me when half the dose works just fine.

Slightly frustrated as my T4 is just gone below normal by 3 points, but it's dropped with each blood test and although I've got most of the hypo symptoms bar weight gain, I have a feeling I'll be hitting a brick wall for now! 😕

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I too have this thyroid dilemma. My thyroxine has been reduced since getting the AF . I was initially told that my first episode of AF was due to TSH being too low but I am actually convinced it was due to a reaction to Cipro. My T4 was well within range. My last TSH was at the high end of normal but I am frightened to increase the thyroxine even though I feel a bit hypo. We have had a reformulation of thyroxine here in France recently which has resulted in a lot of thyroid patients being less well balanced.

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Your theory may well be correct, I think we start to get to know our ‘triggers’. That’s pretty awful to hear of the reformulation, how are doctors responding to patients telling them of changes? The GP says to let the cardiologist sort out the thyroid, the cardiologist rightfully writes to the GP to sort this out. It becomes laughable Frustrating... I’ve finally given up and gone private, with all the great information on this forum, I decided that was my only way of getting the matter sorted out 🙄 I hope... I wish you well!

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That must be really frustrating. Here I have an endocrinologist for my thyroid but I see her very rarely. She too had a reaction to Cipro so she was the only doctor who believed me when I said my afib attack was provoked by that!

The reformulation of Levothyrox was handled very badly here by the ANSM which is our equivalent of MHRA in UK. They did not tell pharmacists to explain to patients that if they had symptoms of hypo or hyper to go see their doc nor did they tell docs that patients should get blood tests after 3 months to make sure they were still well regulated. When I got the first new rx at the chemist they just said the box was different but basically it was the same medicine but the filler was no longer lactose. I thought I had no problems with it but I did have an attack of afib ( no Cipro this time) and when I went for my blood test my free T4 was right at the top of the range which had never happened before. Lots of people complained about feeling hyper or hypo and investigative journalists started looking into it and guess what they found? Merck the manufacturers had opened a big factory in China and who are the most lactose intolerant people in the world? Hence the need to change the filler from lactose to mannitol and bugger the mostly lactose tolerant French population. Hope your private doctor manages to sort you out. Having thyroid problems and afib is a real headache cos you feel you are balancing on a knife edge.

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