A bit concerned

Posted , 7 users are following.

I had an ablation back in December, which wasn't successful. Within a couple of days my heart hate was up to 130BPM.

Cut a long story short, I was given bisoprolol which made no difference.

Following an ECG and echo cardiogram, I was prescribed Amiodarone alongside bisoprolol. This made me feel really ill a couple of days in. Was told I still needed to take one a day.

Have felt rough ever since. Best way I can describe it is "slightly hung over". Things that I normally do are much harder, long walks with the dog, swimming etc. I have always been fit and active. Heart rate is now around 45 BMP.

In February I was due to have a cardioversion, but they didn't do this as my heart was in sinus rhythm when I went in.

Wednesday this week, I had a clinic appointment and they told me the scans I had in December showed my left side of heart was only working at 20%. Apparently this is heart failure but no one told me this until now. Not in the slightest bit impressed.

Meds have been changed now, but I recall being told (back in December) if that your heart is in abnormal rhythm when they do the scans (it was), it can show up things that are not there and that I shouldn't worry if it does.

So, has anyone been in this situation?

I'm stressed and worried and grateful for any advice anyone can offer.

Thanks

Tony

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10 Replies

  • Posted

    I don't blame you for being concerned. Amiodarone was a nasty drug my mom took that led to hypothyroidism. She has kidney failure at the same time, which got all the credit for awful symptoms that were really because of the Amiodarone. Her TSH has skyrocketed up to 150, and the only reason we found out was because of a sharp ENT who knew my mom and was worried why she lacked so much energy. Gradually, she was started on levothyroxijs and I started to get my old mom back. Most remarkable was that the cognitive fuzziness that I was told was due to signs of early dementia went away.

    She too, was diagnosed with heart failure soon after, but truthfully, we never thought this was a proper diagnosis,as well. She was past 80 years old, and her heart did its job fo given her age.

    She passed away on Wednesday, due to infections her body just couldn't beat.

    In hindsight, I can tell you that Amiodarone was poison for my mom, and because of it, my mom wax started on dialysis, despite her kidney numbers holding steady for 3,years. Drs went with symptoms, and assumed they were because of toxicity from kidney failure. The true source of toxicity was the amiodarone.

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    • Posted

      So sorry to hear about your mum - it doesn't sound as if she had the best advice .... & maybe it is impossible for the docs to determine what is precisely wrong with any of us!    But I wanted to add a note about Amiodarone (hope my note is not too long-winded, but stick with it because it might be important for someone you know) :  I was on it for 4 years (was told that coming off it would jeopardise the success of the 3 ablations I had over 3 years).  However, I made an interesting discovery when I was prescribed Amiodarone by the hospital chemist : it had very different effects than the one dispensed by local chemists. I only found that out because I started a new packet (had mislaid the old, unfinished, pack) and over a couple of days of taking the hospital tablets, the terrifying nightmares + other symptoms too numerous to detail here, disappeared. When I went back to the 'old' tablets to finish them, the symptoms reappeared. So I tested both again.  My GP cannot have been unaware of this possibility because he straight-away changed the type of Amiodarone he prescribed.  And from then on, I had an easier ride with Amio. The important point I am making here, is that, if Amiodarone doesn't work for you, persist in getting one made by a different producer (probably from a different chemist - they are all trying to cut their costs & tablets all have different binding agents etc and some are produced more 'cheaply' than others). Luckily for me my GP was OK with answering questions about why there could be a difference in outcome & said he was happy paying the higher price.  But I might never have 'experimented' & thus 'discovered' without the fortunate 'mislaying' of the original tablets.  Now, with new batches of tablets, I'll often start a new packet before finishing the old, in order to identify if there are any significant differences & I pass this gem of advice on in case someone else may be able to benefit from it.

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    • Posted

      My mom passed away in Sept 2017 had been on amiodorone for 3 years and slowly poisoned her to death. Her cod was acute kidney failure. She was on 12 liters of O2 the night she passed. I had no idea until reading about how this drug is killing people.
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  • Posted

    Not sure I can help you other than to send much understanding.     I am also not clear if after the ablation and the 130 beats it corrected?   But you were out again when you went for cardioversion.     And am not sure if you are saying you are no longer on Amiodarone.          However the feelings you talk about about being hung over Yes I feel that all the time.   I felt terrible on Amiodarone which  I have from 2012-2013.  When I asked to stop it - the local GP's were also having a review of all patients on it and stopping  it.     Having said that Amiodarone drips have always got me back in sync when in A&E although times varied how long it took.        I no longer taking Amiodarone but still feel terrible and get worse day by day.   Had a 2nd Ablation in January  2 episodes of AF since and have recently stopped Flecanide but mayhem is going on in my system.   I see the consultant soon so situation will be reviewed but I have no strength at all and can do nothing.    It sounds to me that it would help you to get a clearer picture of what is and isn't happening but if your heart is only working at 20% then that explains a lot.   Hope you can get some clarity about the situation.

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    • Posted

      It takes a long time to start feeling better when you stop the amiodarone.... much of it may because of your thyroid. Have your TSH checked as well as running thyroid function tests. Doctors don't always consult with pharmacists on potential risks. Many don't even keep up with the research . My suggestion is to consult with experienced pharmacists when you are placed on new meds

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    • Posted

      Hi, thanks for all the replies. When I was at Manchester Royal on Wednesday they told me my heart was in sinus rhythm. I'd also had a heart monitor on for 3 days and there was no AF then either. I'm pretty sure that it was the amiodarone making me feel terrible. As a point of interest, since posting this message earlier today, I've walked 3 miles with the dog up a pretty hefty hill, and had no problems at all.

      DOn't know if this is because I'm weaning off amiodarone or the new medication (1.25mg ramipril and 25mg eplerenone.) are making a difference.

      I'm due an echo cardiogram in the next week or two to see exactly what's happening. I believe if you're in AF when they do this (as I was in December) then your heart isn't functioning at full capacity - but it can be righted when the AF isn't present.

      I hope so!

       

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  • Posted

    Oh, I forgot to say, they took bloods for kidney thryoid and liver functions while I was there on Wednesday. I know this has been alluded to in some replies.

    Cheers

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    • Posted

      Sounds like you are on the case with all this.    I am sure you will be better off Amiodarone.  It's quite lethal although it also does a good job when required.    I hope you get the right combination of drugs and continue to be able  to enjoy walking.    This AF business is very confusing and bewildering and from the message on the forum its clear there is no easy answer and all you can do is explore possiblities.    Good Luck 

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  • Posted

    Hi, I am new but was reading your story and wanted to say sorry you are having such a hard time. I just got out of the hospital yesterday and while I was there they put me on tykeson to stop abnormal heart beat. It worked but P wave was too wide so they took me off and sent me home with amiodorone. After taking first dose of 400mg my heart rate kept dropping and I had a lot of trouble breathing, heart rate dropped all the way to 48. Just called cardiologist on call at my cardiologist clinic and he told me to halfen the pill and take 200mg twice daily. That was a scary moment. Was told that I will have to have a abalation if this does not work, but I have a mechanical heart valve, so much riskier for me. I was told my tricupid valve is leaking moderately so I think it is on the left side but was not told heart was at a low working percentage yet. But  I would be very concerned about your heart rate and would talk to someone fast!
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