I am so down at the moment I started with P- AF in 2021 and slowly the episodes have become more I managed 45 days longest for a long time usually 21 days then went into af for 8 days with high heart rate, been in sinus for 2.5 days and have gone straight back in again to AF. I am hypothyroid and my levels are slowly coming down from 108 tsh to now 20 tsh should be 0.04-4.
I have tried everything I take magnesium, taurine, d-ribose, B vits, plus others. I am plant based vegan, but have been eating a bit more processed recently,
Any suggestions? On verapamil as a pip, apixiban twice a day 5mg.
Today before I went into AF I had a horrid feeling and thought something bad was going to happen, my kardiamobile showed unclassified heart rate 145 (usually it will say tacacardia) then 15 mins later went into Af. I tried ringing cardiac at hospital thry said not due till mid March ring your gp it’s so scary
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Lilylui
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Please keep in mind, I'm not medically trained, but some thoughts.
There are numerous online sources that will explain strong the gut/afib connection. One good one is Dr. Sajay Gupta at York Cardiology.
Afib tends to be progressive and that sounds like what is happening to you. As the episodes start to get more numerous and last more than the seven day mark, you are getting into what is called "persistent" afib territory. Nothing to panic about, but if not dealt with in a reasonable amount of time, you could end up in permanent afib, or at the very least in a situation where the odds of a successful ablation could significantly drop, as your heart starts to remodel.
Lifestyle changes are great and supplements sometimes help, but at this point, you should strongly consider upping your medical game.
In general that means two options. Either get on daily and/or PIP anti-arrhythmic such as flecainide both to reduce the frequency and duration of your afib episodes -- or consider an ablation. As to your verapamil as PIP, it's mostly a rate control drug that may not help you enough to stay out of and convert back when in afib.
When your Kardia mobile says "unclassified" or "tachycardia" at 145 bpm, that just means it's an arrhythmia they are not authorized or feel confident to classify. I'll just say when I get those readings -- and I have frequently -- it's aflutter and probably 2:1 conduction aflutter. Again, something that can be treated with anti-arrhythmics and/or an ablation. Save those tracings for your doctor, or send them to Kardia's cardiologists for an instant read, assuming that service is available in the UK. It is in the U.S.
If you're not seeing an ep at this point, you really should. Things have progressed to the point where a GP or even an cardiologist will not be able to offer you all the options, or for that matter even have the knowledge base to guide you.
I saw an EP privately and he gave flecainide to take as a pip but it doesn't work at all sadly. I can’t afford to pay to see him again and I since heard you should have regular ecg’s if taking it, am in U.K. even seeing a GP is hopeless at the moment. He thought the cardiologist would refer to him but I asked and he didn’t. Can’t get to see cardiologist until mid /end March so really worried
Ekg monitoring for flecainide seems all over the place. Depends on your health history and/or ep. Some ep's give it out like candy and others require stress tests before and ekg monitoring after. Wouldn't the NIH pick up the cost of ekg's once flecainide was prescribed? Hopefully, your cardiologist will sort it out in March. As mentioned, the other option is ablation. You're still at the point where the odds of a successful catheter ablation are very good. At some point, the odds will drop if you remain in afib.
The challenge in the UK is getting a coordinated approach between private advice from an EP, a cardiology department that likely doesn't even have one (Lily I think is in mid Wales like me!), and a GP who probably says there's no link between AF and hypothyroidism. We have to be very much our own advocates to get a joined up approach. It's something wrong with modern medicine in general but it's particularly bad here in the UK at present. And as someone has remarked lower down, with TSH levels that high, there should be advice from an endocrinologist.
I had 2 episodes a week. Flecainide 100mgs didn't stop them but 200mgs (a medium dose) daily stopped them completely. Of course you need to ask your private EP about any increase in drugs.
I have had intermittent AF for 16 years. After having an ablation 15 years ago ( which didn’t, last long) I was put on the pip with flecainide. Later on I was put on permanent flecainide which didn’t, help me. But for the last couple of years I was recommended when in af to tak bisoporil first the 1 hour later take Flecainide. Up until now it works and flips back in sometimes within 1 hour but sometimes 2 hours. I would have a word with your doctor about this.
Hi mjames1 my advice is go for catheter ablation I have my done 8years ago ,and thank god I worry less now but like I said speak to your cardiologist and your EP you just have to look after yourself a lit bit better and be careful. Good luck. And less I forget check out dr sanjeev gupta York cardiologist on youtube he is fantastic with great advice on different topics regards AF
I have never heard of Verapamil as pill in pocket although I am not a doctor. I took it for years. Maybe if you took it as a regular dose....amount to be set by your GP... you would get less/fewer bad AF attacks.Have you spoken to your GP about this? It sounds as your 'attacks' are very long.
30 is very low. I would question whether you should be taking that drug. 70 is most definitely within normal range. Ask this forum for a good ep where you live and insist on a referral through your gp.
It is very scary most of us have been there . Good luck
I saw one privately and he thought the cardiac team would refer me but they didn’t have tried to get in to see cardiac team sooner but no way will thry budge so it’s mid /end March, asked gp to ask and he said no as won’t make any difference
I think that as well as gut, I have done some vague moves but can only find the blowing through tubes, bearing down, ect there must be more I will try anything
What are you doing about your underactive thyroid? Your TSH is still far too high and you should be on Levothyroxine. Are you? If so, what dose? You will never sort out your heart while you have a thyroid problem. You need to ask for an appointment with an endocrinologist. Do not be fobbed off by your GP, as generally they know nothing worth knowing about a very complicated problem and they just rely on a blood test that is inadequate for proper diagnosis.
There is a marvellous HealthUnlocked thyroid site and I suggest you join and get help there. But do get an appointment set up as soon as possible for your high TSH. I am amazed that you have been left like this with no proper care.
Agreed. My TSH was 12 and I already feel the difference on a low dose of levothyroxine. Waiting to see if it does the job. Interaction between heart and thyroid especially in hypothyroidism is often overlooked. Luckily my Arrythmia Nurse put me right on this.
I am under an endro who isnt great but after much pushing by me put me on T3 and it’s working great, I also now take levo 50mg every 2 weeks, I used to take 225mg then for some reason after 20 yrs my body stopped converting it, I hope if my thyroid goes right it may stop AF but worried it’s a pipe dream to be honest.
Am on thyroid site and they got me sorting it, so thankful for that.
When I realised that the "E" in ECG and EP stands for "Electro" I looked into this and realised that our whole body - including our heart - is regulated by electricity. If we are getting "rogue" electrical signals in our tickers then we can expect problems. I figured that an ablation is an attempt to cause the tissue where the "extra" electrical signals are coming from to stop by making it difficult for the extra signal to pass through the tissue. (But it will often just find another route.)
Why do we get these rogue signals? Where are they generated? How does our ticker know which signal to obey? How strong are these signals? (in electrical terms) Are they the result of us living in very electrically charged environments, to the point where it has overburdened our system? We have also insulated ourselves from the Earth by covering our floors with insulating materials and doing the same with our feet. This could explain why such problems have increased so much in the past 50 years. If so - how can we reduce this?
I decided that I would try Earthing myself to see if it made any difference. It was easy to do and it was free. It worked for me.
I realise that people's sensitivity to electricity varies from person to person so it might not work for everyone but I would advise everyone to try it.
My way of doing this initally was to stand outside in my bare feet for twenty minutes when I felt "The Bumps." It worked within five minutes so I decided that I would do this for twenty minutes before going to bed and I got a good night's sleep.
I now use Earthing mats, one in my bed and one as a mouse mat, so no standing in the freezing cold.🥶
(I imported and sold hundreds of Earthing mats but no longer do this - sorry!)
There's a lot of information online about Earthing for those who are interested. There's even a movie appropriately called "The Earthing Movie."😀
You can easily make your own Earthing tools because you can just touch anything that is Earthed (eg the copper water pipes under the sink ) or you can stand barefoot on grass, concrete, sand, etc. You can hammer a piece of copper pipe into the ground and then attach some Earthing wire to it and run this into the house. You can even modify an ordinary plug and tap into the electrical circuit in your home if you know what you are doing. (Don't try this unless you do.)
You can buy socks that have silver coated threads in them so you can wear them and still be Earthed. The ones I use are from Carnation and are called Silversocks I think. I wear them in bed too because they keep my feet warm in winter and cool in summer.
Interesting- first time I've seen this mentioned here. We have earthing sheets here at home an refuse to use the WiFi unless absolutely necessary. Ethernet is better, or even your phone. Running a small business we have to use the Internet.
I've mentioned it dozens of times over the last few years - particularly concerning its ability to reduce inflammation and to properly energise our blood cells so that they are less prone to clumping/clotting, but some of the members ridiculed my posts and, because I was selling Earthing mats at the time, I was temporarirly kicked off the site so I had to become a bit less 'evangelical' 😀about Earthing.
I also use light therapy to heal. A friend and I designed some LED lights that contain blue, green, red and infra-red wavelengths. Blue kills viruses and bacteria and it also resets our internal clock when the blue light penetrates through our eyes. Blue also relieves pain and so do green, red and infra-red. Blue doesn't penetrate far but red and infra-red do and can have good effects on muscles, joints etc.
Light energises our cells as long as those cells are properly hydrated. The electrical signals pass through our cells because water is conductive. Earthing works the same way - as long as our cells are hydrated properly, then we Earth all our cells when we Earth just one. There's a lot of information online about the type of water that does this best and Gerald Pollack's work on the 4th phase of water (structured water) is central to this. There's plenty about him and his work online, including TED talks. youtube.com/watch?v=i-T7tCM...
have bought an earthing mat still in AF but will keep using for the benefits, if you have anymore info on them and light therapy please message me with how to find things about them
I am under an endro but he is a diabetic specialist and only goes by the blood tests, am on thyroid group and have pushed for T3 I did take Levo for over 20 yrs then had one Vaxx and everything went wrong and can no longer take it, although trying to add in 50 mg every 14 days on endro advice. Was supposed to have an appointment in March 23 with both cardio and endro but all appointments are delayed
Sorry you haven't found the management scheme that works for you yet. I'd say those TSH levels are a factor because the heart likes our thyroid, as well as digestive systems, to be in balance. So when you DO see the cardiologist make sure they're aware of the thyroid factor. Check put the York Cardiologist channel as suggested. And do avoid processed foods - they are not good for any of us as they contain hidden additives. As a hypothyroidic vegan I'd also avoid too much tofu in your case - soy products inhibit the absorption of thyroxine or its substitute levothyroxine. I had to change my diet as I was having a lot of tofu and soy based miso. March isn't long to wait. Hang in there. January can be a miserable month for many of us.
Are you maybe getting bloating from your vegan diet and that could be impacting your heart? The vegans I have met ate substantially larger quantities of food than I found easy to manage. When in South India on holiday we ate vegan food and I was constantly hungry as I could not eat sufficient amounts despite it being delicious. Animal products are far more concentrated in nutrients. Also are you aware of goitrogenic foods other than soy like the brassica family? It is disgraceful that your TSH was allowed to rise so high and shows the appalling state of care for thyroid patients in the UK. I don't understand why you have been prescribed a small dose of Levo every two weeks. Did your endo explain this? T3 should bring your TSH down but might turn out to be a double edged sword as far as the afib is concerned. Did the afib start after going on T3. On only 9mcg T3 daily my TSH went way below range. If your TSH was very high for a long time it may take a long time for your body to regain it's equilibrium.
Thank you for your reply. I have been vegan for over 30 yrs and never had a problem before, yes brassicas if eaten raw can be an issue and soya I learned on thyroid site on here can be bad for the thyroid. My levels of vitamins are all optimum in fact when I did eat meat many yrs ago I used to have to have iron injections monthly within 3 months of stopping meat never needed them again thankfully. A lot who take T3 don’t have AF issues I have only been on it since March 22 AF and my thyroid issues started 3 months after I had my first and only vaxx! Won’t be having anymore, I am now starting back on levo but all that does is convert to T3 so T3 bypasses that, every time I had levo after that(they tried in hospital whilst I was in) it send me into severe palps. They prefer me to have levo as it’s cheaper. I am on a small amount of levo now to see if my body can tolerate it again. Previously before T3 it put me straight into AF they think I must have been out a year but even at 108 I never felt unwell or anything weirdly
Thyroid is complicated! It's good you're on the site. Amd getting T3 at all is a bonus in the UK. I couldn't even get tested for Free T3. However, my levels not the same as yours. That's interesting too about the vaxx given we know that viruses can kick the thyroid out of whack. I reckon mine started after a bout of shingles. Going back to the digestive question- you're doing all the right thingsnre goitrogens and spy products. I'm wondering if it's worth your while looking into the effect of FODMAPS. Many legumes belong to this food group and they give off a lot of carbon dioxide during the process, which might press know the oesophagal sphincter and cause a knock on effect via the diaphragm to the heart. See York Cardiologist video on hiatus hernia and AF. I had this issue. Good news for vegans is - you don't get the same effect from.tinned legumes. So I no longer by dried pulses to cook.from.scratch and fingers crossed rarely have issues. I'm an omnivore but for.health reasons alternate each day between fish or meat and vegetarian or vegan.
Are you saying that your thyroid medication was working well for 20 years ( I assume you were just on Levothyroxine before like most uk patients) till you had your first covid vaccination? Which type of jab did you have?
I don’t think it’s too unusual to have difficulty converting Levo after many years of managing on it. I’ve read that over-range levels of T4 are associated with the development of AF. I don’t know if that may apply to you. Your TSH level is still very high, so very likely that there are effects from thyroid under treatment.
My own experiences started in my late twenties when I first saw an excellent cardiologist because of my ectopics and chest pain, now forty years on I've had AFl and AF and an ablation and still regularly get a moderately fast rate and runs of ectopic beats.
That first doctor showed me on an X-ray how my stomach (and presumably anyone else's) was able to push my diaphragm directly into my heart and cause it to react to being stretched by producing ectopic beats. Much later, I learned that these can also lead to AF in prone individuals. I've read some evidence on the internet about this and how the heart reacts electrically to being stretched. It's brought me to realise that AF might not be set off by what is in the food so much as what the food physically does to the heart, via the digestive system. That also explains why bending and stretching can cause electrical effects such as ectopics and racing, which happens with me and others I've read from.
I manage it only after a fashion, sadly. I suppose that I worry about it more than I need, often finding myself wondering if it isn't something worse. Anxiety is perhaps the worst aspect on balance. It usually starts at breakfast and I wait till I feel that it's not going to resolve itself, and then I weigh up the day ahead. If we have something on that would likely make it worse, such as looking after our grandson, or some gardening, cleaning or DIY, then I take a pre-emptive dose of bisoprolol, usually just 1.25mg. That works well enough to slow my heart down and reduce the ectopics.
I somehow doubt that the direct cause is my diaphragm pushing at my heart, more that my heart is sensitive to being pushed and pulled. At the weekend, I was taking the car tyre pressures and pumping them up, for example. Well, just the act of kneeling down had me feeling a bit odd and, when I checked, it had sent my heart rate up and brought ectopics on. Before I had AFl and AF in 2019, I recall feeling uncomfortable doing things like that but never connected it to my heart; if anything, I put it down to digestion. Another thing I recall from past days that brought me the same odd feeling was doing work above my head such as changing a bulb or painting a ceiling. Sometimes eating a meal brought it on, too. When I was in hospital for my ablation and hooked up to a monitor, the nurse commented how my just swallowing water brought on a really strong ectopic beat which, she said, would have been because my oesophagus likely naturally pressed against my heart.
This explains maybe why I have never been able to connect my heart issues with a particular food or drink as so many seem able to do. With me, it's just the act of eating or drinking itself (or bending, stretching or whatever). Interestingly, a close elderly friend who has permanent AF told me his cardiologist told him to avoid stretching where possible as it would make him worse. It seemed far fetched when he told me, but I think it was right.
Very clearly put. I have to be very careful with a particular forward bend in the upper chest. Immediately get a pulling and twinge. Passes very quickly and doesn't seem to set anything off post ablation fingers crossed but it usually happens after eating. I've assumed I.have a sliding hiatus hernia.
Yup. March last year and it was at QEH with Dr Lencioni. Seems to have done the trick. Now, if only I can get through this week's challenge of flooding problems with the Lugg. Very stressful day today!
I have one and that is what my doctor initially blamed by troubles on. Call it "the old dog" he told me (the hernia, he meant). But one day, while walking up some library steps in Oxford on a visit with my son, I felt really odder than ever. I didn't realise it till later but my heart was at 155 thanks to atrial flutter. I'll never know whether all the times before that I'd felt "odd" was anxiety / panic as I'd often thought and been told - or AF / AFl.
Yes, in a way. I had an ablation for the atrial flutter in 2019 that seems to have worked well, but now I get lots of ectopic beats and mild racing. I had one severe attack of AF, too, after the ablation which took me to hospital for treatment and I've had occasional much milder bouts of it, but not now for a while.
Hi Lilly, I take Diltiazem which is also a calcium channel blocker. A pacemaker was suggested for me because I can’t take a higher dose without slowing my heart too much. I would push for the pacemaker so you can take verapamil regularly - it won’t have any preventative effect as you are and won’t do much to stop episodes either.
I tend to agree. We are put on to regular meds far too readily in my opinion. I don't think I ever needed pills all the time. Most of us just need PiP and should be encouraged to do that - and advised - from the get go.
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