I’m going through hell at the moment, I have AF & been put on 200mg of Amiodarone in May this year. I also take Levothyroxine after having a total Thyroidectomy (thyroid removed) in 2013 for Graves Disease (overactive) I have not had any problems with my thyroid medication until I started the Amiodarone.
I have started with a bad tremor, very aggressive towards my husband and other people, my language has become very colourful when I get agitated, which is so out of character if anything I’m introverted I hate making a show of myself I have no patience at all and get angry all the time which are signs of being thyroid overactive my GP insists I’m overmedicated?? I have reduced my thyroxine intake and no change I have now started being unsteady on my feet walking like I’m drunk, GP reduced nebivolol to 1.25 to see if that would help it hasn’t, he’s referred me to ENT at the hospital.
I feel like I’m going out of my mind my cardiologist is on holiday until 4th October I have sent an email regarding my problems.
GP is insistent it’s not the Amiodarone, I had started to notice my tremors & feeling angry appear to start as soon as I take my thyroid medication, so I decided to experiment I didn’t take the Amiodarone at my usual time of 9am I did take the thyroid medication as usual at 11am and the tremors subsided during the day & felt a lot calmer, no anger issues I then took the Amiodarone at 6pm and the shaking etc started again, I cannot stop my thyroid meds with having no thyroid. I know it’s a long shot but wondered if anyone else had experienced the same problems.
I just don’t feel right I feel really ill, any help or advice will be so appreciated.
Many Thanks
Hilary
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hilary77
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Well Hilary, as you know we are not medically trained and even so not allowed to advise on your medication usage. However, your situation sounds really awful and I know what I would do with the Amiodarone !! There must be an alternative for you. I hope someone who has experienced this will respond.
Yes it does affect Thyroid you should be having full bloods every 3 months or so to check on thyroid. I was put on amiodorone for 6 weeks before and 6 weeks after my second cardioversion and came off a few weeks early due to a slight rise in thyroid count. After 6 months off amiodorone it had gone back down to normal. Did your GP or cardiologist put you on Amiodorone? I would contact them again to check on this. It could be that you just need. Some people can be on amiodorone long term with no serious side effects but generally Docs only put you on this short term. If you absolutely have to be on this long term then you may need an adjustment in your thyroid medication to help. Do you not have a specialist cardiology nurse you could contact?
I do have a cardiology nurse but she’s also on holiday. I did send her an email a few months ago when I first started feeling rotten asking if it could be the Amiodarone causing my problems but she said as I didn’t have a thyroid she didn’t think the Amiodarone is to blame that it’s more likely the thyroxine.I was rushed to hospital twice early this year they had to do electro cardioversions as both times my blood pressure dropped to dangerous levels & I didn’t respond to treatment.
The cardiologist put me on Amiodarone for life they’re trying to avoid me having to have an ablation they said because of my age & other serious medical conditions I am not a suitable candidate but they haven’t ruled it out as a last resort I have also had a loop recorder implant in May to monitor my heart 24/7 I have bloods taken every 3 months and have reduced my thyroid meds but the problems haven’t abated with the reduction.
I just don’t know what else to do I feel no one is listening to me.
You might consider going privately to an cardiologist or EP and/ or an endocrinologist. A pain on the pocket but it might help to get some answers sooner rather than later.
Hi it cost me 175.00 and I saw an EP within days. I just looked up a local.one and rang myself for an appointment.I really think you need answers asap!
Also GPs are not experts in anything just as their title suggests General Practitioner!
I know what I would be doing with amiadarone! I'd reduce to minimum dose now until told otherwise
Thanks again for the information, I thought you had to get a referral from a GP to see a specialist/consultant.I’m probably being thick but what is an EP?
Sorry I am in rural Wales on holiday signal bad. Others have told you what EP means.If you are paying for initial consultation you refer yourself privately costs about 175 and get seen within days.
They then can transfer to their NHS list.
If NHS, you must insist that you get a second opinion on you're symptoms. You have the right to this.
The iodine in Amiodarone be very toxic for some people. It reduced my brother’s thyroid activity to practically zero. Clearly it is having drastic affects on you. I can’t understand why a GP would not know about the toxic effects of this drug.
Even the leaflet that comes with it says if you have problems with your balance you should seek urgent medical advice..What I am surprised at is I sent an email to my specialist cardiac nurse asking if any of the medication she put me on could be causing any of my problems which I listed.
I got an automated reply to say she’s on holiday.
I did receive an email from an Arrhythmia nurse who was following up on my email unfortunately it had gone into my junk folder (only just found it today) telling me he didn’t think any of my medications (I listed them all) are causing any of my problems, that it could be my thyroid medication, yes I know that but it’s the Amiodarone that’s causing the problem with my thyroid meds in the first place.
I feel like I’m banging my head against a brick wall.
No one is listening to me & it’s starting to stress me out which isn’t good for my heart.
If many doctors haven’t cottoned on yet that Amiodarone can cause problems, then it is hardly surprising that the nurses haven’t either. Best person to ask about drug réactions is a pharmacist.
I don't have a thyroid and I've been on Levothyroxine for over 30 years with no issues. I was put on Amiodarone prior to a possible ablation. I did ask my HF nurse about the possible effects on thyroid but I was told as I didn't have one it wouldn't affect it. I was taken off Amiodarone immediately after a blood test showed it was affecting my liver. I didn't have the issues you are describing. It's such a minefield with all the different medications we have to take. Could you take your Amiodarone at night, would that help lessen the effects during the day?
I have halved the Amiodarone and taking it in the morning and thyroid meds the evening doing it for 1 week. Next week I’m going to reverse thyroxine in morning & Amiodarone at night to see which works best. At least I’ll have info to give to SCN. Taking them at different times of day appears to have helped a little.Thanks for all your help much appreciated.
I have just started taking Amiodarone after putting it off for 9 months after reading about the awful side effects, ie tremors, thyroid, liver, constipation etc. The EP said I must take it otherwise I cannot have an ablation. It's so hard to see any NHS doctors atm so I agree you should book to have a consultation privately if you can and they will write to your own GP with their recommendations. I saw a great specialist, Dr Ahsan, he was based in Harley Street but he also works at St Barts and the Spire Hospital in North Cheam
thanks Jeans I am going to check tomorrow, that is brilliant news, the last time I saw a specialist consultant privately was at his home which were in the 70’s and I had to get a referral from my GP to see him, things must have changed as it was a long time ago. This is good to know as they listen to you if you’re paying.
I’m not on good terms with my GP I saw him about my thyroid medication he just kept wanting to reduce it and I went into a rage and showed myself up he looked at my hubby and asked him if it was only him that I’m angry at, hubby said “no! now you see what I have to put up with”
I am unable to see my GP, all they want to do is get you to phone up the surgery at 8am to try to get a phone appointment. I asked if I could see someone face to face and they refused 'because of Covid'.
I had similar when I was put on a hormone treatment for breast cysts. I had to come off it because I became so aggressive. The consultant said that some ladies love it because it makes them feel strong - yeah right, like a body builder on steroids 🤬
I'm on Thyroxine and Amiodarone and not had the issues you have. As Amiodarone takes 3-6 months to leave your system after stopping it, I would think it unlikely that missing one dose would have made any difference to your symptoms. I take mine at night but doubt that would make a difference either as it's still in your system anyway. Best to chat to your consultant about it rather than the GP.
My understanding is amiodarone is fir short term use because if side effects but you mention on it fir life ins later comment. I think you should urgently ask for an alternative.
Totally agree, there are other alternatives. Keep a record of all your side effects and try to get a second opinion from a private cardiologist with a face to face appointment. It will cost you about £150-£175 but it's worth it for peace of mind. Good luck and keep us posted
I understand Amioderone can affect your thyroid. After about a year on it I was taken off it and put on Bisoprolol and Digoxin by my consultant Dr Beynon at Stoke Uhnm
Amiodarone does affect your thyroid should only be used in hospital for life threatening situations, Amiodarone is an iodine-containing compound with some structural similarity to thyroxine which can effect the thyroid gland, my husband had to come of it within 2 weeks as he was on thyroid medications should never have been given Amiodarone.
Thank You! for replying but I have had a total Thyroidectomy for Graves with TED this is where the controversy is as my Specialist Cardiology Nurse said “she didn’t think it was the Amiodarone causing my problems as I haven’t got a thyroid” what I am wondering if it actually effects the thyroid hormone replacement ie Levothyroxine which I cannot get an answer to. I know it’s the Amiodarone and thyroxine but no one will listen to me😡 if it has a similar structure to thyroxine and I’m taking thyroxine could that be the answer?
Yes my husband has his Thyroid removed years ago has been on Levothyroxine ever since not troubled till they put him on Amiodarone in hospital for tachyarrhythmia was not a severe case, was let out the next day with 800mg of Amiodarone rushed back to hospital 2 days later kidney failure, was taken of Amiodarone. There are alternative medications. Allergic to Amiodarone is on his medical history. Yes get a second opinion. Take Care.
You’re not wrong there I have been had a constant battle with my GP over the years with regards to my thyroid medications, In May he rang me up & told me he was reducing my Levothyroxine by 25mcg I begged him not to take it off repeat as I would reduce it, then take a blood test to see how I am doing, after the call I checked patient access & he’d already taken it off my repeat.This coincided with the second week of reducing
Amiodarone 1 wk @ 600 mcg then 2nd wk @ 400mcg then 3rd week@ 200 which is the dose I’m supposed to be on forever this is when the tremors started so I thought it may be down to reducing both meds at the same time.
I got an appointment to see my GP he was adamant that he wouldn’t reinstate the 25mcg of Thyroxine so I went ballistic I started shouting at the top of my voice at him told hubby come on we’re leaving he has no intention of reinstating I’ll buy them off the internet, by this time I had opened the door hubby tried to get me back into the room by getting hold of my arm I shrugged his hand off looked at GP if anything happens to me it’s on your head I were shaking so badly hubby calmed me down & GP asked hubby is it just me she’s angry at he replied no! now you know what we have to put up with all the time, GP reinstated my meds.
They keep trying to reduce my meds different ones so I argue with them and I firmly believe it’s because one of my heart meds are so expensive as the SCN said when prescribing the heart meds your GP won’t like this it’s expensive I can’t remember which one it is but ever since then I get a phone call or text to do a review of one of my meds to see if I still need them they’ve never bothered before just this last few months.
I take Tramadol for arthritis & fibromyalgia as I can’t take any arthritis meds because I had a stroke years ago and it has caused vascular dementia early stages & the memory clinic stopped naproxen & amitriptyline as it affects the brain.
GP told me they had reviewed & were stopping the Tramadol I screamed down the phone what am I supposed to take sugar lumps for the pain after an 8 min argument he conceded but I’m only allowed them every other month. They also tried stopping my Temazepam I’ve been on them for twenty or more years because of the pain I can’t sleep without them.
I have been with GP Practice for twenty + years and probably only ever had 3 or 4 reviews in all those years,
I have had 8 so far this year.
Then they wonder why I’m not well when they’re trying to kill me lol and keep telling me they only want what’s best for me yeah right!
Sorry for the long reply but it’s made me feel a whole lot better just writing it down.
Hi everyone I spoke with the Specialist Cardiac Nurse who was very understanding & sympathetic.
I told her I had taken it upon myself to halve the Amiodarone & that I had experimented trying my medication at different times of day also that my symptoms had reduced slightly since the reduction she said that Amiodarone stays in the body a long time after reducing or discontinuing it that I should give it a month then ring or email her to let her know how I get on and if there isn’t a substantial improvement in my symptoms she would discuss my options.
She even said she was sorry that I am finding it difficult at the moment & hoped halving the tablet would improve things for me.
Thanks everyone who has replied and I will keep everyone updated as to the outcome
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