AF Association
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Exeter AF Meeting and Amiodarone Damage

At our Exeter AF get-together in Exeter a few weeks ago we discovered that out of the 19 people who attended, 3 of us had had our thyroids damaged due to taking the drug Amiodarone/Cordarone. We now have to take other pills for life to rectify this. That's a high percentage isn't it?

I know that for myself and another member it did nothing to help our AF either, I didn't ask the the third person whether it had helped them or not.

I'm wondering how many others out there have had health problems caused by this drug?

I'm also beginning to give thought as to how it can still be allowed to be prescribed?

How many others are there out there, still undiagnosed with thyroid damage after taking Amiodarone/Cordarone, who like me thought the dreadful tiredness they experienced was caused by their AF?

What are your thoughts please?

Jean

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Under European Society of Cardiology protocol from about 2010 Amiodarone should be the drug of last resort and only ever used for short term treatment, for example to assist cardioversion. One suspects that a lot of the damage started a long time ago when it was more widely used.

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Bob, my use was fairly short term, perhaps 6-7 months before having an ablation. Up till then I'd never tried Flecainide or many other drugs. I think I may have used it briefly another time too. I still have a pack, dated 12/12/2014, so it wasn't that long ago I was taking it. Must get my old diaries out and check.

Jean

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I was put on it after an ablation and in no time developed pneumonia so I refused to take it and was switched to Sotolol in hospital a doctor told me one wrecks your lungs the other your liver that was it I woudnt take either

They dish these drugs out like sweets do you own research we are not guinea pigs

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When I had my most recent prescription for Amiodarone this was in CCU where I was having waking bouts of 245+ heart rates. The hospital pharmacist counselled me first so I did not feel I was treated in a cavalier fashion. This was in 2013 for the weeks before my 3rd ablation.

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I was prescribed Amioderone a few years ago within moments of seeing a cardiol. for the first time.I had at that time an unresolved thyroid condition for which I eveentually needed t3 and not t4. I knew enough to know to tell the the cardio. that I should not take Amiodarone. he then prescribed Aspirin!!

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I just wish I'd never taken it at all and yes, I agree, pills are too readily handed out. You were so lucky to get off it.

Jean

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Agee, I don't take any drugs any longer and feel twenty five again, Full of testosterone and

very energetic; back to being normal, or it could just be the glorious sunshine we are having this week ? Which is it I wonder ?

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Are you AF free now? No anticoagulant?

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Hi Jeanjeannie50, Yes thanks all is good for the moment. However I am a realist and am quite aware it could come back to bite me. Just leading a normal life doing what

I enjoy doing (and drug free) long may it continue !

Best wishes

Cycleman.

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Yes, Amiodorone affected my thyroid, now under active. Although off of Amiodorone now, have to take thyroid meds still

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My thyroid is underactive too and yes I will now have to take Levothyroxine for life. You know I'm just wondering if my EP ever knew what the Amiodarone he prescribed did to me. I don't think I ever said to him about it! If they're never told they'll never know!

Jean

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It is a well known side effect. Amiodorone is a very powerful drug with lots of side effects, I was on it quite a while, and eventually asked to be taken off it, made no difference to my AF, which is now permanent, not fast but irregular

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Yep it also destroyed mine , now under active

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Do you know how long you were taking Amiodarone? I've spent quite a lot of time this morning looking through my diaries, but now realise that the drugs I was taking at the time were never recorded there by me . Or at least I haven't found a reference yet!

Jean

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I had an 18 month spell on Amiodarone ..about 1994..( the longest I've been on it )......have been on levothyroxine since. Is Amiodarone solely responsible though....i understood that an underactive thyroid is quite common in in older females. I've heard of several who are hypothyroid and not afflicted with AF

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That could be the case of course, but no one else in my large family has had thyroid issues. My GP was worried about putting me on Levothyroxine so left me at a high TSH for a few years. He was afraid it would increase my heart rate and make my AF/flutter/tachycardia worse. It was only when I went to hospital for a different appointment that it was noted and my consultant wrote telling my surgery that I should be on Levo. I was blaming my extreme tiredness on my AF. Those Levo pills gave me back my life.

Jean

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Hi Jean

I have only recently started taking this drug in the last month so very early days. I am hoping I don’t have to take it for long after hearing other people’s horror stories about it but at the moment it has been the only thing to give me any sort of respite since my ablation in July. I’m seeing my GP this week to ask what tests I need to have done while I’m taking it. I will be watching this thread closely to see what others say.....

Thanks, Maura

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Maura, I knew someone who took Amiodarone for around 8 years and it never affected him at all. We must each make our own decision as to whether we take it or not.

I'm glad to hear it has given you some respite from your AF. Did you try any other medication before being prescribed this?

Jean

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Yes, flecenaide which made my AF worse unfortunately!

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Hello Maura5

I too am taking Amioderone 200 mg once a day to try and keep the AF at bay along with Bisoprolol 1.25 morning and 2.5 at night. I have LFT blood tests done every three months to check liver and thyroid and a breathing test every year to check the lungs. I ah e been on Amioderone for about two + years and have developed red patches on my skin which can itch at times a good creme works well but I think this is a sideffect of Amioderone along with headaches and a dry cough at times.

I am thinking of asking my cardiologist if it would be possible for me to change these drugs because they really do slow you down and limit your daily energy. Unfortunately they are not controlling my AF, I have had 6 episodes since June this year after a 20 month free spell, it has all gone crazy.

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With respect you cannot take a sample data set of nineteen people as being representative as a meaningful analysis. A little research will provide some enlightenment of the side effects of Amiodarone which are well documented.

Two that i came across gave a Thyroid side effect of 3.7% (this on a low

maintenance dose) by Medscape and a study from South Korea with 1000

participants with an even lower figure. One study i came across but with

only a data set of 79 on 100mg daily resulted in zero significant side effects,

although with such a small number of participants cannot take these results

seriously. With so many factors at play it is always difficult to arrive at

commonality amongst different studies analysing the same subject, however

the most important factor is the number of participants and how representative

they are of their environment. I am not flying the flag for Amiodarone and

will be glad to say goodbye to it in due course. Meanwhile i will continue to

take my 200mg daily and be guided by my medical professionals.

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Hi Bennie

I knew as soon as I started reading your reply that you would be saying you are taking Amiodarone. I'm sorry I really do not want to make you feel uncomfortable taking this drug, though you sound as though your are happy to do so on your medical professionals advice. As I have said in an earlier reply, I knew someone who took it for around 8 years with no effects whatsoever. I'm just wondering how many people have had their thyroid damaged after taking it. Mine was, so hence my dislike of this drug and my post enquiring.

Wishing you well

Jean

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I was prescribed Amiodarone after my first ablation. I was not overly happy, but I did a lot of research. I went to the opticians before starting and I had just had a lot of blood tests at the time, including thyroid, liver and kidneys, so I had a good idea of my baseline health.

I was on 200 mg per day between April and July 2017. Due to the long half life, I calculated that I built up a reserve of 11.5g in total (theoretically, I should still have 50 mg left). I read one report that said the serious effects of the drug were only likely to kick in when there was 30g in your system, which would need a 400mg daily dose. I have looked for this report again, but can't find it.

I have no idea whether the amiodarone helped my AF, but I know that there were no ill-effects.

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That's really good to hear John. I take it that your thyroid blood tests were ok after you finished taking Amiodarone? My GP was telling me that my tests were ok, when in fact they weren't and I now tell people to ask for their thyroid TSH rate. He was afraid thyroid meds would increase my heart rate and make my AF worse and hoping the abnormal level would eventually resume to normal. The extreme tiredness I felt from being left with an underactive thyroid spoilt my life for quite a few years.

Keep well.

Jean

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All of my tests were fine prior to the amiodarone. Afterwards the liver, kidney and eye tests were still good, but the thyroid wasn't repeated. There was nothing to suggest any problems. I never believe the Doctor when I am told my results are fine, I always get a full copy and look them up myself. Three years before the AF I went to a "well man's clinic"; they told me I was very healthy and should continue to do whatever it is I was doing. Actually, my BP and liver enzymes were slightly elevated and I should have been examined a little more thoroughly.

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I was put on it prior to a cardioversion, and supposedly for 6 months afterwards.

I managed 3 months post DCV before stopping the Ami,

Side effects were intolerable , I was unable to be in any daylight what-so ever . I was getting terrible sunburn if I stood too close to a window, inside the house, wearing factor 50+ in February .

It also damaged my thyroid , making it go over active. Luckily it went back to normal 6 months or so after stopping. My eyesight has gone down hill too, but I can't prove that this was the ami.

I refuse to take it now, even for IV cardioversion.

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Yes, I'd refuse to take it again too. Strange how you were affected so much by the sun, which goes to show how different we all respond to the same drugs. The sun didn't bother me at all, but only my arms with a high factor sunscreen on were exposed to it when gardening.

Hope you stay well now.

Jean

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Yes, I guess you were lucky.

I was doing the ironing in the living room, and my face got severely sunburned . I love to be outdoors, but it made me a recluse .

Glad I'm off it, and doing fairly well at the moment. I hope you are too

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I also suffered from extra sun sensitivity while on amiodarone. I have not been tested recently for thyroid problems, but I am over tired constantly. I've been putting that down to bisoprolol. .. I'm on 10mg daily. The amiodarone did help my af and saved me from having a second cardioversion, but I came off it after about 18 months due to its potential problems. I have had 2 cathe terms ablutions since, and my af is now less severe.

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Hi Liz

Feeling tired was a symptom of my underactive thyroid. I would ask your GP for a blood test.

Jean

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Thanks Jean. ... I will x

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Hi, Mikee69, i am glad you have recovered - amiodarone is one of the drugs which can cause severe sunsensitivity - there have even been cases of lupus. I have not taken it, but found out about both heat and sunsensitivity from my experience with a number of blood pressure drugs or maybe a possible combination of drugs, after a paroxymal afib found on a monitor. The heat sensitivity i had developed on a beta blocker but was not discussed with me and it seemed to go after i had stopped. Then i had a problem with sun starting after use of an ARB, then some weeks after stopping i unfortunately tried an ACE - and had almost your experience with extreme light sensitivity and sunburn . As you describe, i became sensitive to both UVA and UVB - windows and often even clothes did not protect, i think this is because UVA travels through windows etc. My sensitivity has not gone after stopping, though i have to continue using very occasional tiny amounts of beta blocker as a ' pill in the pocket' while i await an appointment. it is a long time since these reactions first started, but only 6 months since i got in the state you describe after less than 2 weeks of ACE. i am still hoping this nightmare will end . Now other symptoms have appeared, and i am being investigated for lupus. i feel there should be more care, investigations and warnings by consultants before putting patients on powerful drugs with known side effects, especially patients with histories of allergeis and/or histories of previous reactions. Maybe i should have investigated more fully, but i was so shaken by my experiences and diagnosis i didn't.

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I do hope you get things sorted soon

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Many thanks, Mikee69. I hope you continue doing ok. Glad i found this site, it has taught me a lot

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Hi jean I was taking it for 18 months , it gave me thyrotoxocosis , I went hyper for 6 months and now left hypo for rest of life as it damaged my thyroid

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Sorry to hear that. I suppose 18 months, is a little over the normal time that people take it pre ablation or cardioversion. I have a feeling I may have taken it on two separate occasions, pre and post one of my ablations. Hope you are well now. Jean

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I was put on Amiodarone in January 2016 way after the European Society of Cardiology protocol, whilst in hospital after OHS because I had Afib. I was on it four months before being taken off it. It did nothing for my Afib. Nothing was explained about this drug to me when they put me on it. Later my GP did a blood test for my thyroid and found it my thyroid was underactive but decided to wait and see if it rectified itself. It was about 6 weeks later that I was put on Levothyroxine for life.

I think that doctors prescribe too many pills anyway.

I agree with BobD that Amiodarone should be the drug of last resort and only ever used for short term treatment. But it not used as a drug of last resort and if it is used what is short term.

I had also been off Amiodarone for six months before my cardioversion, which worked and thank God is still nearly two years later working, still in good old NSR. I was not even offered or given this drug at the time.

BTW as bit off topic I have seen something about patient problems coming off of many drugs.

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Thanks for sharing your story Norm. Yes, Amiodarone certainly should be the drug of last resort, but as you and I have learnt to our cost it's not! In general people put trust in the medical profession to do what's right. Have you reported on the Yellow Card page your experience? I've only recently done so. If we keep quiet more people may be damaged. Hope you stay well now. Jean

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Just done it online

Every little helps not that I expect them to listen to the people, just like politicians.

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I'm just grateful that in my first days of learning I had AF...asymptomatic still two years on. ..I decided not to take Amioderone. ..prescribed as an adjunct to cardioversion which eventually it was decided not to proceed with by my EP and consultant. By that time I could have taken it for several weeks. I had the tablet from the pharmacy, but when I read the side effects I simply couldn't take them, The best decision I could have made I think....certainly no regrets . I'm sorry it has affected others negatively.

I should add the EP would have done the cardioversion without the Amioderone, but we didn't get to that point.

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It's good to hear how wise you were, though it appears from the responses here that not many people have an adverse reaction to the drug.

Jean

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I was on Amiodarone prior to and after cardioversion. Cardioversion lasted 2 weeks before going into flutter! I had asked cardiologist if there was something else instead but I got a definite NO! Felt dreadful on it, very sensitive to any sort of light, face kept going red like sunburn and also gave me chronotropic incompetence, inability of heart to adjust to different levels put upon it! Was on it for about 4 months in total, now have Amiodarone Intolerant on my notes!

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I hate the way we're almost bullied into taking some tablets. Digoxin made me feel as though I were going mad (my neighbour would confirm this), but I was told I had to take it in order to have a cardioversion. So the message was take it, or we won't cardiovert you!

Unless you are feeling very tired it doesn't sound like your short dose of Amiodarone did any harm.

Jean

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No, didn’t have any lasting affect, it was back in late 2016 early 2017. The annoying thing was he didn’t mention anything about any side effects or that I should have blood tests, was only through the amio leaflet, my own research and posts on here that I found out. I didn’t even receive a follow up appointment after the cv, which I was told I would get 6 weeks after! So I visited my GP stating I felt awful and that I wasn’t in NSR, he organised an ECG which confirmed things, he contacted the cardiologist telling him I shouldn’t be on amio, who then agreed I could stop and referred me to an EP! A flutter ablation in October 17 seems to have been successful, just suffer a little with ectopics now! You have to be proactive and stick up for yourself and a good definitely GP helps!

Jo

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My EP prescribed Amiodarone after my ablation in July as my arrhythmia was originally worse after the ablation than before and my heart needed some time to recover. I told my EP that I was uncomfortable with the idea of taking Amiodarone but he assured me it was safe 'for short term use'. I have now been taking 200mg per day for 3 months. I understand that this is a low dose and I didn't have any pre-loading. There are few references above to the dose that people have been taking and I would assume that this is particularly relevant. I asked my GP after a month whether I should have some tests to check for thyroid, liver & lung function but she said it was not considered appropriate at such an early stage.

I am having an echocardiogram on Thursday to see if my heart failure has improved since early this year as a result of resolving my arrhythmia. I think (am hopeful) that it has. If this is the case, I expect my EP will agree to me stopping the Amiodarone. If it hasn't - and he doesn't - what alternative options should I put to my EP? I don't want to continue with Amiodarone. Are there other, safer, anti-arrhythmics that could do the job?

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Hi Ian

We really can't advise on medication, but I was put on Flecainide.

Jean

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Not looking for advice, Jean; just questions to ask my EP. :)

I'd noticed that many people here seem to be on Flecainide so I already had that one in mind.

Kind regards

Ian

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I have not heard of this drug in Australia. I googled it the side effects sound terrible. I hated every beta blocker and calcium blocker I was on. It really makes you wonder how bad all these treatments are.

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Yes, I agree. At times I feel pills help/cure one thing, but damage you elsewhere!

Jean

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Interesting reference that may suggest that hypothyroidism could be picked up in PAF sufferers as they tend to be subject to more rigorous screening than the general population particularly if they are on Amiodarone??

Saying that Amiodarone has an impressive range of other potentially serious side effects and unless absolutely necessary I would rather not take it.

thyroiduk.org.uk/tuk/about_...

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After 2 unsuccessful ablations, I went into persistent AF in July with the result that I could not easily climb stairs or go up any sort of hill. My consultant at the Royal Brompton put me on Amiodarone in early August (after a blood test) which I was most reluctant to do in view of this drug's notoriety, but it worked like magic and I have been in NSR now for 2 months. I saw the consultant again last week and he wants to keep me on Amiodarone but hopes to reduce the dose (now 100mg per day) in a month or so and perhaps put me on Dromiodarone (spelling) a milder form I understand. I had a full blood test ten days ago at the GP as part of my annual oldie check up and was told all was OK. In the first week of Amiodarone at 3 x 200 per day I had some side effects (ankle knee and scrotum swelling) but they disappeared when the dose was reduced. Having said all this, I agree that this must be a drug of last resort.

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Be wary of dronedarone. One of its benefits is that it's not supposed to affect the thyroid. However, one nasty side effect for some is ultra sensitivity to light (it brought my wife out in a really bad rash all over her body - literally - after being on it for about a month). Even now, some 3 years after stopping it, she has to be careful when out in the sun. I'm not saying you will have that reaction but if you do take it, be aware that light-sensitivity can be a big issue (more so that Amiodarone).

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I was on Amiodarone for only two months last year when I was first diagnosed. It did nothing for my AFib. At the time I entered hospital I had really long, really thick hair, after two month on Amiodarone there was about two thirds of it gone. My GP was very sympathetic and took me off it and sent me for a cardiology appt. They changed me to 1.25 Bisoprolol. I know it may sound vain but it was very distressing on top of everything else.

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That's not vain at all re your hair Mittzy. I hope it grew back?

Jean

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I am starting to get some growing back now, thanks for asking. Take care and I hope you stay well. xxx

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This drug was mentioned at the recent "Patients Day" in Birmingham. It was considered to be a dangerous drug that can/should only be used under close pharmaceutical supervision and for good reason. My impression was don't touch it unless you have been totally convinced by your medic that it will benefit you.

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Hi jeanjeanie. I am having cardioversion in 6 weeks and was told to start taking these 3 weeks before the procedure. The chemist thay dispensed them went through a list if possible side effects with me, which worried me as I have never taken anything with so many possible precautions. I also read online that it was banned from use in the 1960's. They started to use it again for AF. I'm worried about taking them. Is there an alternative for pre cardioversion?

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I think they may be fine if you only take them for a short period. Cardiologists and EP's all have different ideas on the best pills to take pre cardioversion.

Jean

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Yes Jean hypothyroidism, balance problems, calcium deposits in both eyes just had cataract surgery which the amiodarone played a part in. Had cataracts but they got worse while taking amiodarone for 15 months. After my conversion my AFIB has gone to a normal sinus rhythm for the time being. I often wonder if it was worth taking but the damage is done. The balance problems are awful using a cane now. What a horror!

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That sounds dreadful! Please make sure you record your symptoms on the Yellow Card website.

Jean

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A friend who was given it (following a bypass- he doesn’t have AF) had thyroid problems after taking it. It seems to be a menace.

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I just wonder if the thyroid issue is under reported. Hence medical profession are not aware. Hope your friend reported his outcome on Amiodarone online to the Yellow Flag organisation.

Jean

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Have you had a look at the 2003 report on complementary therapy for CHF by the Extend life magazine [it is on their web site]. The report shows research into various vitamins, minerals, amino acids, Q10, omega 3 etc., for supporting the hearts function. I am of the opinion that it is helping me with my recently diagnosed 'mild' reduction in LV pumping, my life times 'palpitations', and my occasional AF. I was started on the low dose of 1.5 g of Ramipril and was also given 1.25g of Bisoprolol Fumarate. I came off the Bis., after 10 days as it affected me very badly. I have noticed many people on the various forums have complained about that particular drug too!. I hope to keep the drugs to a minimum. I can only try. I really do feel that the combination of vits., minerals, amino acids etc., are helping. One of the side affects of Bis., is the possibility of making the condition worse. Isn't that a 'blast'!!!!!!!

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It is recommended that at least magnesium [citrate preferred] >360 mg and Q10 >300mg should be taken to aid palpitations and AF! See yorkcardiology.co.uk Sanjay Gupta Cardiologist. He gives presentations on AF, Palpitations, CHF etc.. He is very very good!

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Hi, many thanks for your response.

I took magnesium citrate for years, not realising that it was causing the awful soreness in my stomach. Now, I prefer to get all my vitamins naturally from food.

I was in permanent AF until a few months ago, then I stopped my Flec and Metoprolol and it just about went. Stopped all my vitamin pills and it went completely and I've now been 4 months totally AF free. I think the fillers in pills have a lot to answer for too. I've had AF for 13 years now and have had three ablations and numerous cardioversions.

I agree with you re Sanjay Gupta and know him quite well, believe all he says and think he genuinely wants to help people. He made his Pills, Pills and More Pills video after I messaged him.

Hope you stay well.

Jean

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I was on Amiodarone for three months May through July 2018-after having three cardio version in two weeks following my second ablation for flutter and fib. I begged to go off the med after reading your post and someone else story of eye problems, Thank you I am happy I am on this forum,

. I had tests completed all was ok. Unfortunately after six weeks I went back into flutter and had another cardio version- they said that the Amiodarone had a six week time it was still on system

I have had six cardio versions in six months.

My insurance keeps paying but it is scary it costs $100,000 for each ablation and over $5000 per cardio version. There are changes happening in our whole system -

I am back on flecanide and metoprolol. So far things seem ok- some crazy beats go and come.

I do not have a kardia cuz I think my cardio versions are for flutter,

I go back to EP end of October -

They say that my dosage of Flec can be no higher than 100mg- because of my slow QT ? on my EKG. There was talk of switching to Solidol sorry wrong spelling.

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Glad to hear that you are off that toxic Amiodarone! I don't have a Kardia either, I only trust a stethescope. Once I was in AF and struggled to keep conscious, my wrist pulse felt normal but when paramedics came they said my pulse was too high to register in my wrist. How could I ever trust something to measure my pulse in that area!

I think the drug you are going to try may be Sotalol, really hope it works for you. It's strange how some drugs can help some people and not others. We are all so different and its only trial and error with medications that finally gets us feeling better.

Wishing you well.

Jean

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