AF Association
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Thyroid problems

I have been on Amiodarone since March following cardioversion. My blood tests have shown up problems with my thyroid kidneys and liver and there is blood in my urine. My appointment with the Cardiologist is scheduled for April 2018 although my GP is going to see if he can get me in sooner. I am frightened. Is there anything I can do in the meantime that may help. I'm 62 and have given up alcohol nicotine caffeine chocolate and fizzy drinks.

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Sorry, you are having this worry. I guess you have stopped taking the Amiodarone? It really is horrible stuff!

Because I took it and it damaged my thyroid I now have to take thyroid medication for the rest of my life! I don't think there's anything you can take to make this right, time and being off of this toxic pill will help.

Please make sure you let us know how you get on.

Best wishes for a speedy solution.

Jean

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Thank you Jean. My GP has told me to keep on taking it until I see the Cardiologist. When that will be I'm not sure. It took 4 weeks originally but that was with a referral from our hospital.

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Sorry but change your GP! That is a hideous idea. Is he expecting you to have total thyroid failure and liver and kidney damage before he does anything? I would be worried as well. At the very least he needs to write to, your cardiologist for guidance or better still ring the secretary. I know what I would do but obviously can not advise.

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That's crazy as it will have time to do even more damage. I would ring your AF nurse or the cardiology department where you had your cardioversion and explain the situation. If I'd known it was damaging my body I'd have taken myself of this pill immediately. Not that I'm advising you to do that. Are you taking a beta blocker as well?

What was happening with your heart before your cardioversion and how was it making you feel?

Please ring your AF nurse today, or seek advice from the department that performed your procedure. If you don't have an AF nurse ring the hospital switchboard and ask to speak to 'one of the AF nurses in the cardiology department'.

Jean

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Hi

I am sorry to hear this but i agree with bob

Change your doctor he either does not care or he is a fool

It is well documented that this drug cause bad side effects

This is YOUR body your health

What do u think ?

If it is causing so many bad sufe effects i would not wait a day

Research yourself be an expert patient

🌺

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The clinicians who recommend medication don't have to put up with the side effects. Amiodarone and Dronedarone are stored at cellular level and stay in the body for weeks after you stop taking it. You need to see a Cardiologist or EP urgently. If you start to cough and hear crackles you need to have a chest x-ray. If it shows a mass in the lung it's pulmonary toxicity / cryptogenic organising pneumonia not community aquired pneumonia; the North Bristol Lung Centre have experience. Dronedarone and Amiodarone were near-fatal for me.

Once you're improving, fill out an online report on the MHRA's Yellow Card scheme. It's the only way that this medication is going to be seen as a risk.

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You could get a private appointment with your cardiologist which would probably cost you about £200.

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When my thyroid tests went abnormal (very low TSH, high free T3 and T4, or hyperthyroid) my cardio took me off the amiodarone immediately. It takes a long time to work its way out of your system and the thyroid takes months to settle down, too. Mine seems to be doing ok. Meanwhile hyperthyroidism can cause tachycardia, one of the problems I was taking the drug to prevent.

We don't know if your GP knows something we don't know about your condition, that would make the risk of taking amio worthwhile. There are other drugs that don't have so many side effects. I agree with the others who say see a cardio ASAP and let them get you off that amio.

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In 2015 I stopped the Amiodarone and told my doctor several weeks later. It was a very difficult decision to take, alone. In the end, what tipped it was this: the balance of risk and benefit. Amiodarone is a marvellous drug for some people, but when it goes wrong, it is usually severely wrong. On the other side, I knew I could live with AF, and there are other drug cocktails to experiment with/for the doctor to experiment with!! So, severe price versus small benefit. In your case you already know you are paying a price.

In 2017 I was chemically cardioverted using oral Amiodarone. The doctor insisted on keeping me on it for a month. I agreed. Then he wanted another month. I agreed, then I put my foot down. I am glad I did.

For separate problems, Chronic Bronchitis, I am likely to have a lung scan soon. This will show if there is lung damage, which could be because of the Amiodarone.

Whatever you do, document it. Keep a record of who you phone etc.

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I agree about documenting

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Did you have any adverse reaction coming off the Amiodarone. The guidelines say you should never just stop taking it. In all honesty I don't want to take any more but I worry about the implications

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All the written advice I have seen says, the first hint of trouble, stop taking it. There are no adverse reactions. This is not like a betablocker. The real problem is the damage done, and the damage that continues to be done till it is out of your system.

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Thank you for your good advice.

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Becks your GP is not giving you the correct advice. Direct him/her to the NICE guidelines on Amiodarone. I stopped taking it 33 days ago as (after 11 months) I have just been diagnosed with Cirrhosis. As a non drinker and someone who has never had hepatitis it is obvious it's the Amiodarone Toxicity causing it. My Cardio wanted me to continue the Amiodarone until I'd had a Liver Biopsy, the Heptology Consultant said stop it now.

I asked the Liver consultant what can I do to minimize any further damage. He told me the only thing I can do is stop putting the toxin in my body. This drug has a half life of 120 days at least. It will continue to work and cause the damage even after you stop taking it. It will also continue to keep AF under control for sometime after you stop as well. Within a week of stopping this drug, I felt and looked so much better. Even after 30+ days the AFib has not come back, I've had odd flutters but that's all. The drug is still working even though I'm not taking it, it's scary because I know it's still causing further damage to my organs.

If it were me I would go online and find the telephone number for my cardiologist, you will be able to telephone and speak to his secretary. Tell her your concerns and ask if he/she will call you back or arrange an urgent appt. I have done this in the past and have had a call back within a few days from consultant. It is not acceptable for you to continue to take this drug when it is causing you harm and you do not have an appointment booked to see your cardiologist for another 6 months.

Your GP should really be starting the referrals you need to other specialists as soon as possible too. You may have to push for the help you need, but it is out there.

I wish you well and hope you can find some help very soon. Having AFib is horrid, dealing with the effects of this drug is even harder. One doctor has said to me 'Amiodarone does not have side effects, it has effects!

Take care and please let us know how things are going.

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I am really sorry to hear you are having such terrible problems and I am shocked that you cannot get an appointment before April 2018 when you are suffering what sound like very serious side effects. I agree with others who have said, quit the drug and change your doctor(s). No matter how expensive it may be I would somehow find the money to see a Cardiologist, quickly, however, it would not be the one who will not fit you in until April/2018. I know it is very hard when you are feeling ill but please try to seek other help quickly.

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Thank you all for your responses. I have had a chest X ray today, have a blood test booked in for the 19th and am waiting for the Doctor re Cardiologist. I have made the decision not to take any more Amiodarone. I am not taking anything else apart from anti coagulant and now Levothyroxine. I do have some Bisoprolol which I was on before the Amiodarone was prescribed. I will ring the Doctor on Monday if I have not heard from him by then. Thank you again for your advice.

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Think twice before starting or restarting other drugs like bisoprolol. There are drug interactions, some of them can be nasty. While I happily encourage someone to stop Amiodarone, I would also say that taking other meds needs skilled advice. I can and do handle that myself, but I have to say, this is far more serious territory than simply stopping Amiodarone. Fortunately, because Amiodarone effects last a long time, you have margin, at least a week.

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I was on Amiodarone earlier this year prior to and post cardioversion. Even though on amio the cardioversion only lasted 2 weeks after which I felt dreadful and during exercise my heart rate would suddenly drop drastically making me feel very light headed. My follow up to cardioversion should have been 2 months but as I was feeling so dreadful and no appointment had come through went to gp. He did an ecg which confirmed I was no longer in NSR and was now in flutter. He immediately wrote to Cardiologist, I also rang cardio's secretary who said she would speak to him. A week later cardio's sec rang saying stop amio and cardio referring to EP. Same day GP phoned saying he'd discussed my case with his colleagues and all said stop amio. Stopped and within days started feeling better no ill effects as it stays in system for so long after stopping. Saw a EP he said I'd been suffering chronotropic incompetence (heart not able to cope with changes in activity) due to amio and that I was amio intolerant and am now having a flutter ablation on 2 weeks. I am now in NSR with flutter every 2-3 weeks for 2-3 days when I dint feel good but feel better than when on amio. You must push your GP and phone cardio's sec to get advice from cardio. If it were me I'd just stop it before any more damage is done.

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Thank you. All this is really scary. Damned if you do and dammed if you dont.

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i have been hypothyroid since taking ammioderone i was told by the cardiologist this was caused from taking ammioderone i am now permanently on thyroxine........was given ammioderone 5 years ago prior to cardioversion which i might add failed. i was on bisoprolol for 5years before the dr changed me to a calcium channel blocker because i could no longer tolerate dragging around tired and breathless once off bisoprolol i felt 10 years younger. i was told also that nobody should be on ammioderone for longer than 6weeks due to the risk of organ damage

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