I normally attend the Royal Free, only fifteen minutes from home and have usually found the cardiologists very good. After a cardioversion some six months ago I was put on Amariodone which so far has been successful in preventing the return of atrial flutter.
Unfortunately since then I have developed a severe tremor of my hands and as a scan ruled out Parkinson's the neurologist suggested the most likely cause was the Amariordone, this is apparently a known side effect of this drug. Another symptom is a contiunous cough which other people have reported as a side effect.
The cardiologist and other members of her team have all refused to accept this possibility, claiming that there are no side effects and the warnings about these in the patient leaflet are just scaremongering. My doctor has reluctantly agreed to refer me for a second opinion - can anyone suggest a London Hospital where the cardiologists would be willing to consider the possibilty of side effects from this drug.
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Bolander
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I have no knowledge of London or hospitals there. However I have been referred to Bart's for ablation and everyone who has knowledge of the hospital states how wonderful it is.
Hi Bolander - I developed a persistent cough and had other side affects from Amiodarone and became very unwell (rapid weight and appetite loss and inability to sleep for more than 3 hrs a day etc.), - you are right to be cautious of this drug. It does not suit everyone, even for short prescribed times - my side affects started mildly, after 2 weeks, starting with flu like symptoms and gained momentum very quickly. I am ok once I stopped (took Amiodarone for just over two months).
I empathise with you greatly about finding another hospital - I hope someone here will be able to recommend a known Hospital for you. It is difficult to recommend, as different Drs/EP's etc. within a hospital, have differing opinions.
(My GP and I decided to stop taking this drug before I had the second opinion as it was making me so ill....)
It's hard to think that any cardiologist would say there are no side effects for Amiodarone, because they are pretty well documented.
If you are near the Royal Free, perhaps try Harefield, also North London, but North West of course.
Be well
Ian
My experience is you can't leave it all to the medics. You have to tune in to your own gut feel, keep control and if it feels wrong i.e. side effects can't be put down to anything else, push them hard to find an alternative.
Also, I wouldn't rule out Alternative Practitioners to cure you. I am not confident enough to put myself totally in their hands but all I can say is I see philipweeks.co.uk at Regents Park as well as my cardiologist and I am very pleased I do.
I've found UCH/The Heart Hospital satisfactory, but all their cardiology functions are being transferred to Bart's , where they have a brand new cardiology department. Since the staff from UCH/the Heart Hospital are also transferring to Bart's, it should be a good service with v up-to-date equipment.
I am not a medic, but I am somewhat surprised you have been put on this drug. I to have Atrial Flutter (paroxysmal), but I am on no rhythm control drugs whatsoever.
From what I have read "rhythm control drugs rarely work with atrial flutter", but like I said I am not a medic. I suggest when you get a minute you read "15 facts about Atrial Flutter" on Dr John Mandrola's website.
I see Dr O'Neill at St Thomas' in Waterloo. At one of my early appointments I mentioned this drug to him and he said he would never prescribe this except as last resort. He then did ablation. So I would recommend him.
I too find it surprising that a cardiologist would deny the possibility of side effects of Amioderone. I was on this for about four months and taken off it due to side effects by my EP Dr. Boon-Lim, based at Hammersmith Hospital. I would certainly recommend him. (incidently, he is speaking at the AFA day next week).
My thanks to all who have taken the trouble to reply. There is some very useful information there that will be helpful in my search for a second opinion.
From what I have heard and read Amiodarone is certainly a nasty drug, has many side effects. I also understand that certainly in new cases they only like to use it either side of an ablation to help the heart - the approach of my EP.
I am under the Barts Heat Centre at St Bartholomew’s Hospital. Certainly the new building is very impressive (as is the equipment).
This now incorporates the services and staff from the London Chest and University College London Hospitals, The Heart Hospital in Marylebone, Mile End Hospital, Newham University Hospital, The Royal London Hospital, Whipps Cross University Hospital.
Apparently the new centre is Europe’s largest and newest specialised cardiovascular centre and will perform more heart surgery, MRI and CT scans than any other centre in the world!!!! When I had my ablation in March it was performed in the old building (no complaints) though I saw my consultant before and after in the new centre. Not sure whether my second ablation will be in the old or the new buildings as they are doing a phased transfer.
Thanks for the useful recommendation. I am due to see the cardiologist next Wednesday and unless he has a change of view about Amiodarone, Barts looks like the obvious place to go for my second opinion.
I think the key thing here is are you under a general cardiologist at the Royal Free or are you under a specialist EP (Electrophysiologist)? Coining BobD's phrase a cardiologist is the plumber of the heart and an EP the electrician of the heart (and body). You wouldn't get a plumber into your house to do the electrics.
Look on the AFA main website at the list of EPs. Is yours there or is the Royal Free there? If no then I would get referred to an EP.
AF is a complex and developing branch of medicine and is changing. What a general cardiologist was taught 20 years ago about AF was very different ad much less. Many GPs know very little (and some admit that). Even courses of medicines and durations have changed significantly (and will continue to do so). Remember it is your health - you have no allegiance to a specific cardiologist (or other specialist).
There seem to be differing views of the area covered by EPs. I asked my GP whether it would be better to see one, and her reply was that they only cover interventions such as ablation, and a general cardiologist would be more appropriate. Dr Pier Lambiase is listed as an EP practising at University College London, (now presumably at Barts) so he would be the obvious choice - it would be particularly useful if anyone has personal experince with him.
Hello Bolander sorry can't help with London Hospitals but I had the same problem as you with Amiodorone. Definitely get a second opinion. My EP went to great lengths to tell me the disadvantages of this "dirty drug" but prescribed it as a last resort on a subsequent admission with AF. It helped my heart but gave me Thyrotoxicosis which for me was severe tremor of the hands and a loss of 3 stones in weight as well as feeling rotten and weak as a kitten. Do get your thyroid checked, they should be doing regular blood tests anyway if Amiodorone is prescribed. All is well now (d.v.) but it took about 6 months to get a clean thyroid. I had a pace and ablate 2.5 years ago which has been very successful. Please let us know how you get on. Be Well!
Some good news - I saw a different cardiologist at the Royal Free today and he accepted that my medication should be changed. Amiodarone and Bisoprolol are to be replaced by Sotalol. Fingers crossed that this will fix my problems, though I gather that it will take a while for the Amiodarone to leave the system.
Well done. . Very glad to see all the good advice you got and were able to act upon. The question is are royal free still advising that amiodarone has no nasty side affects on eyesight, stiffening of the lungs, and thyroid toxicity and if so does this amount to professional misconduct?
I saw the original cardiologist several times after the change in medication but she didn't make any comment and I didn't raise the matter. I'm pleased to report that, despite the adverse comments on this forum Sotalalol has proved to be much better in my case with no apparent side effects and apart from one brief episode I have remained in NSR since my cardioversion a couple of years ago.
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