Dilated Cardiomyopathy - Ablation v Amiodarone

[ExcelsiorUK]

I find myself between a rock and a hard place and would welcome professional input. I was diagnosed just under 3 years ago with presumed viral cardiomyopathy. No family history, no obvious personal history - just a Muamba style cardiac arrest out of the blue at home, in bed. I was put on Amiodarone two and a half years ago post implantation of an ICD.

Recently the Amiodarone triggered thyrotoxicity so I had to come off it. Not, as it turns out, a great idea. All had been quiet, now my ICD has intervened with full shocks to revert three life threatening ventricular rhythms and has monitored others that self resolved - just.

After the third shock in nine weeks, my consultants suddenly started talking about arrhythmia storms and failing ICDs. They had few options as I understand it; I couldn't restart amiodarone until my thyroid gland was ablated. But they then proposed an experimental (to their mind) pericardial ablation. That should take place this Friday. However, the endocrinologist today was mad keen on ablating my thyroid this week - which we then discovered would stop me touching my four and a half year old for nearly a month. And would prevent a heart ablation.

As I tried to recover from this proposal I called my arrhythmia nurse who was the opposite - saying no, do the heart ablation and see what that does before jumping to the thyroid ablation option. Yet the endocrinologist seemed spurred on by the cardiologist and was adamant that my rogue thyroid was the source of my ventricular fibrilations.

It's Christmas. We do not want the family to have to stay away from me. Life has been hard enough this year. We are getting massively conflicting messages at the moment which hopefully will be resolved.

Are there any other options at this point? I'm very functional day to day, but the unpredictability of these current arrhythmia is scaring all of us. We were perhaps spoiled by the effectiveness of amiodarone. But that does of course carry its own drawbacks, as I have experienced.

It's hard enough for me, but this impacts the whole family, and they need consideration true. We're suddenly being hit by a great many issues which are hard to deal with. Any advice would be appreciated. Currently, we aim to do the heart ablation, and consider the thyroid ablation in the new year. Apparently at 37 I am unusually young for thyroid ablation, but again, we have conflicting views on that from the cardiologists vs endocrinologists...

[Professor William McKenna]

Your background raises many issues. The immediate one is control of your ventricular arrhythmia. Though the apparent diagnosis is dilated cardiomyopathy, you appear to have an arrhythmogenic cardiomyopathy, i.e. arrhythmia rather than heart failure clinical presentation/symptoms. This has implications for the genetic background and types of genes responsible, and in the future this should be looked into with respect to both your diagnosis as well as risk of disease within the family. The current issue is your need for amiodarone. It is generally the most effective antiarrhythmic, but there are other options. What other drugs have you been on? Is there a family background of premature cardiac disease age less than 40? Is your exercise capacity normal or near normal? The answers to these questions will help in determining the risk-benefit from thyroid ablation as well as VT ablation.

[ExcelsiorUK]

Good afternoon Professor. The ventricular problem is essentially new, pre Amiodarone I did not have therapeutic shocks for VT, just pacing which was often provoked by a confused ICD trying to pace atrial fibrilation which I have again suffered from briefly having come off amiodarone. I don't have problems with getting up steep hills etc, only when in AF. EF is 20%. No family history of early deaths.

I have been on sotalol, bisoprolol, currently carvedilol at 75mg / day. Left ventricle is 1.5 x normal. I also take 2.5 mg Ramipril and 180mg digoxin. Ablation due on Friday (heart). I have had genetic tests done, what specific tests would be needed for this other type of cardiomyopathy? Can it develop off the back of dilated? Shame I didn't get on here earlier.

Last question - do you do house calls?! I'm only in West Yorkshire! I do however appreciate the long range support. Many thanks.

[Professor William McKenna]

Hello again. West Yorkshire is a bit far for a house call! Happy to discuss any of my comments with your consultant if appropriate/helpful. Best wishes for Friday.