I am a new member of this group and new to an atrial fibrillation diagnosis given when I was an overnight patient in AE in December.
I was discharged and told to go home and enjoy my life . I have been trying.
I have many ectopic beats each day and the doctors felt that the frequency of the runs of ectopics together with an irratic low thyroid function had caused my heart to go into AF .
My GP arranged a heart scan blood tests and a three day monitor. I’ve not had results yet. I take medication ..
I have been reading the positivity in your posts and wish to thank you .I am just terrified and I suppose just looking for support.
Thank you
Written by
Bettyboo25
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Hi Betty, you’ve come to the right place! I’m not sure what you’re terrified about but as you haven’t had any results yet I can’t say absolutely that you haven’t got anything to worry about. What I can say is that if there was anything obviously scary going on you wouldn’t have been allowed out of hospital. You seem to have a conscientious doctor (yay!) and hopefully the tests you’ve had will be reassuring. Ectopics and AF are both frightening, particularly the ectopics - I was convinced I was going to die suddenly when I first had them regularly. So 24 years on I’m still here. It’s still a case of ‘Hello darkness my old friend….’ when I have an episode of AF but I’m generally enjoying my life and I’m pleased to hear you’re trying to do the same.
I’ll just stop here with good wishes because you may get a lot of messages ☺️
I was the same and shocked to have been fine and then bang! I had SC cardio version in November having waited since March , and have been fine. It is frightening when you are waiting for consultation and in pills that make you feel sleepy and rough.
There is light at the end of the tunnel. Keep your spirits up. ❤️
Atrial fibrillation itself won't kill you but the the company it keeps can be dangerous if not properly treated, such as the risk of stroke and heart failure. Hopefully you are getting the right treatment ❤️
Thank you for your post and welcome to the forum! This is a safe space in which you can share thoughts and experiences. I am sure our members will make you feel most welcome.
It is completely understandable to be experiencing worries around a new condition. It can take time to adjust so it is important to be kind to yourself.
If you would like any support, advice or information, our Patient Services Team are available via our Patient Helpline or via email, please visit: heartrhythmalliance.org/afa...
We are always here if you need us.
I would also like to direct you to our AF and You Booklet which contains supportive information that I do hope you find helpful: api.heartrhythmalliance.org...
We all feel frightened at first , but as you get used to your medications and make the lifestyle and diet changes to keep you generally healthy you do become more confident about doing things.Relaxation techniques and creating a gently paced style of daily activity helps.
Just be patient with yourself and try little things each day and build up from there.
Once all of your tests are done you'll get more peace of mind and a self care plan that suits you too.
Are you on medications for your heart or for your thyroid function?
It's good when you have a couple of health conditions to look up what the recommendations for diet , lifestyle and exercise are on recommended health charity websites , and then choose options of what to do or eat which helps improve both of your conditions. Generally it helps to keep both illnesses as well managed as you can to help improve the other.
If you start worrying it's also good to try distraction methods and to do an activity that stops your mind racing with negative thoughts. Simple chores , drawing or reading, a hobby that takes concentration , and humming or singing all take over your practical thinking skills and stop your brain from thinking or worrying.
It's a great start when you join a group and post as much as you need for tips or just for a word of support, take care , Bee
I also have 5 mg Bisopropol and 100mg of Levothyroxine
The GP also put me on Apixaban 5 mg twice a day
I have an appointment with my GP next week to get results so I will know more then . I’ve just been a bit overwhelmed by the way I felt . Feel like a real wimp when I hear the struggles of some people on here .
Don't feel like a wimp , everyone's health conditions are as important as each other, genuinely, and we all have the same mental health reaction to being unwell , especially when it affects our hearts.Thyroid conditions are hard to cope with until things become stable and they can cause lots of other things to occur like AF , blood pressure and heart rate swings and bad fatigue and mood changes so it's understandable that you feel overwhelmed.
Just give yourself time , things improve and you are being very strong.
5mg Bisoprolol is a hefty starting dose and it could be that which is adding to your woes. I felt like a zombie on 5mg - lethargic , tight chest, worsening of asthma and a headache that came on like clockwork 2 hrs after taking the pill. Women tend to get far more side effects on Bisoprolol than men. This is probably widely ignored by medics. Firstly Bisoprolol is a fairly old drug that was brought to market in the good old days when women were not included in clinical trials and secondly post marketing complaining by women about the side effects of the drugs they are on is often dismissed by doctors (particularly male ones) . You are not a wimp - you just need to get the right medication. If your afib is paroxsysmal - ie comes and goes you need to determine what your heart rate is when in afib and when in NSR . The best way of doing this is with Kardia device. If the heart rate is going too low when in NSR then the Bisoprolol dose is probably responsible. Some people take a lower dose of Bisoprolol daily and then extra when having an episode. Ectopics are tricky. Docs say they are harmless but personally I find them worse than my actual afib. I am getting a lot at the moment and finding them difficult to cope with.
yes with Levothyroxine but the readings remain wrong so I’ve had to have some pathology blood tests done and I have to wait for the results of those as well as the blood tests for heart failure .
Please join the HealthUnlocked Thyoid group here on this site. You will need help. You sound like a novice with thyroid and believe me, it's way worse to be hypothyroid and under medicated or badly treated than it is to have Afib (in my opinion). I have permanent Afib, so it's always out of rhythm, but the hypothyroid stuff gives me the most grief.
Sadly the doctors and endocrinologists available to us today are barely literate in matters thyroid. Vets are better at treating it!! So we have to learn all we can and advocate for ourselves. We often have to test ourselves privately too to get a full picture.
You need your TSH and FT4 testing (which the NHS usually does) but it's also vital to have your FT3 and thyroid antibodies (there are 2 types) tested at the same time to either rule out or in for Hashimoto's thyroiditis. Once you know you have Hashies then dietary changes can help. We don't all have that and for me dietary changes have never made a jot of difference for thyroid or Afib so I eat what I want. But I do know all about hypothyroidism, how to diagnose it, treat it the NHS way, treat it better than that, monitor it and live with it. I didn't at the start. I do now. So my best advice is to let the doctors sort out your Afib and learn a bit about it so you don't panic over it, but start right away learning about hypothyroidism. That's the one you need. Low T3 will cause Afib as easily as over range high T3 hormone.
A really good starter book for thyroid is the wonderfully accessible and readable book by Barry Durrant-Peatfield. He was one of the best thyroid doctors we had. He still practiced the old-fashioned way and actually got his patients well. We lost him to old age last year. A sad loss. His book is here in paperback or Kindle versions:
I have a copy myself and I've gifted it to several people now. There are loads of other books, but I think this is the best primer for a beginner that there is.
You can get this all sorted out. Don't be afraid. It just takes time and effort and you will feel so much better with optimally treated thyroid.
I have an underactive thyroid, (auto immune). Mine surely is linked to AF. Despite being on Levothyroxine for about 4 years, my TSH levels remain on the high side. I am on 1x 50mg Levothyroxine Mon-Thurs, and then on 2x 50mg Fri-Sun.
I suggest having a discussion with your GP who prescribed your Levothyroxine. Too high a dose of Levothyroxine can cause AFib, so I suggest you get your GP to re-assess if your Levo dosages are correct for your AF diagnosis. You still however need to get your under active thyroid under control. Just got to get the balance right.
I’m sorry to hear you are having problems with your thyroid too. I’ve been referred to an endocrinologist so I’m hopeful they will sort my medication. He mentioned in a letter to my GP that I may have to reduce my levothyroxine from 100 to a lower dose . I don’t really understand how that would work . It’s all unexpected but I am lucky in so many ways.🙂
That is not a good sign! An endo suggesting a dose reduction before he's even seen you. Most of our doctors only look at our TSH levels and that isn't even a thyroid hormone. It's a pituitary hormone. This is why it's essential to understand this illness ourselves and fight our corner.
When I was new to Afib I was taking 2 types of thyroid medication. Levothyroxine and Liothyronine. Levo is T4, the storage hormone and Lio is T3 the active thyroid hormone required by every organ and cell to function. It's the power source. The battery.
The cardiologist I saw told me that T3 could kill me and I'd be better off stopping it. Regardless of the fact I wasn't taking a very high dose and I was monitoring my bloods regularly. He frightened me witless and I stopped taking it full stop. That of course made me feel worse. That's when I really started to learn about thyroid . Stupid cardiologist didn't realise that the heart and the brain are the biggest users of T3 in the body. Without adequate T3 we are going to get heart issues and cognitive issues.
Most people can convert Levothyroxine (storage hormone) into the active T3 hormone. But quite a few of us have a genetic issue from one or both parents the hampers this conversion. I have inherited the genetic issue from one parent. This makes me an erratic converter of T4 into T3 and no matter how much Levothyroxine I took, I could not get any energy from it as it simply wasn't converting well enough. Too much Levo then made me feel badly for other reasons. This is why I urged you to read that book and start learning. Hospital endocrinologists are pretty much all diabetes specialists these days. They know little about thyroid and care less. But we can advocate for ourselves once we understand.
I am now taking something called Armour Thyroid, a natural desiccated pig thyroid, the original medication for the condition. It contains T1, T2, T3 and T4. Everything we need but the NHS won't dispense it to new patients anymore so I have to buy it from a specialist pharmacy. I need that T3. My heart needs it. So please resist any instruction to lower your dose until they can show you a test form with the result of your FT3 test at the very top of the reference range or above it. At that point they are right to reduce. Most of us need our TSH under 2, many under 1, to feel well and our FT3 and FT4 to be in the upper half of the reference range, often the upper quarter for T3.
it is perfectly natural to feel concern, especially with everything being so newly diagnosed.
The realisation that your heart is not working correctly, is a shock and in some ways feels like your body is letting you down and the ultimate consequences of that appear larger than ever before. Although it takes time to get your head around it, I promise that you will, and that if you are kind to yourself, you can easily adapt to live in this “ new” world.
In the long term, I found talking my thoughts through with a therapist really helped and relieved me from feeling I was adding to the worries of family & friends. Talking to people, on here, who know what you are going through, helps immensely. No question was ever dismissed and a supportive reply always comes through so make use of this forum.
Thank you Sue . I see my own worries clearly in what you’ve said. I don’t want to talk to my family because they get worried and look upset. Positive side is it’s great to be loved ! I think I will be better when I know for sure what the results of my tests are . X
i am getting more frequent episodes now that i'm 67 maybe 2 a year and my heart is structurally sound and in Sinus after Cardioversion about a month ago.
Initially i would only get AF on average once every 4 or 5 years. First diagnosed at 35 so now at 67 i still live a full life with great mediterranean diet and lots of exercise. Now that frequency increased i take supplements magnesium Vitd3 and Coq10 and only drink zero beer. For the last year they put me on daily metoprolol and low dose Flecanide to see if we can slow down the frequency.
At times i get really concerned but then the great people here get me back to my normal self hopefully you can too!
Take a deep breath, write a daily diary and write a list of Q's you want answered by the cardiologist, not your GP.
Yes AF does make you anxious but it also can be used as a tool to adopt lifestyle changes that overall are a net benefit, so be determined to make it positive.
Don’t be frightened . learn to live with the occasional attacks when they occur. You can probably manage those attacks with a pill in the pocket. Try and avoid the triggers i.e stress , caffeine, spicy food and excess alcohol. Finally remember they it not dangerous!
Yes we have all been there and yes we have also thought our time is nigh, it’s easy to say don’t worry but very hard not to. There are so many things that can cause these conditions it’s impossible to know your particular reason but either way the help of a good doctor you will get there. Changes to lifestyle and the correct medication will help but you also have to be aware of what your body is doing, eat and drink healthy and perhaps try a good quality magnesium supplement for a month to see if it helps. There are many things that could help but I think magnesium is a good start is because it will not harm you (may make you go to the toilet more often). Your condition won’t kill you but it will potentially ruin your life until you get the right treatment and Unfortunitly that can take time and you will find that as you condition is not life threatening some medical staff can be a little less understanding.
Hello bettyboo you have certainly come to the right place we have all felt like you are now it's a journey which I am still on but with the support of this forum you do not feel alone. Don't forget the lovely bhf cardiac nurses on the end of the phone.
Try to “keep calm and carry on”. Mindfulness, meditation or gentle breathing and resting with a good book or listening to music could be helpful - “Don’t panic!”
I endorse Parya 's recommendation above about the BHF cardiac nurses available on a free phone line Mon->Fri 9am->5pm. I am not allowed to give the number, but it's easily available online.
I’d never heard of them but fortunately, my heart is well controlled with the Flecainide now and as the fatigue I have leads me to spend most of my time resting, I don’t do anything that might precipitate problems!
AF and the associated ectopic beats arise from a relatively “safe” part of your heart, the atrium. This means, despite the sometimes awful anxiety this can quite naturally cause, even to the point that death is around the corner, that you are safe from harm.
That stands for all unless:
a) you are at risk from a blood clot (which is preventable by taking anti-coagulant such as edoxaban or apixaban);
b) that your heart output doesn’t fall too far to cause fainting;
c) there is some underlying physical cardiac or other cause (such as thyroid, sleep apnoea, hypertension or diabetes).
The last two need blood tests, ECG and echo ultrasound scans to check.
Thank you for the information. I have had blood tests an echo ultrasound and a three day holster. I also take apixiban now . I am just waiting for the results . hopefully I will hear soon .
You have had more tests than many are given, so I would say you are being well looked after. Also, although your anxiety is likely groundless, well... we're all in the same boat, where some cope better than others. Me? I'm an anxious one. I wish it were otherwise, but we are what our genetics make us to a large degree.
Write back when you get your results, maybe? I would put money on their showing nothing of serious importance (what doctors call "benign", meaning the future is bright!).
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Just feeling sad
Frightening Feeling Today
Feeling a little lost. 
Nocturnal Asphyxia-Atrial Fibrillation
