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Avatar universal

Should I ask for more tests?

I'm only 21 and recently went to see a doctor because I wanted to know why my heart had irregular heartbeats (I heard them in my head). They did an EKG and sent me to a cardiologist. They did a Holter test and then a cardiac stress test, after some questions ten minutes later I was diagnosed with "Cardiomyopathy in infectious and parasitic diseases classified elsewhere (I43.0)" accompanied by "other specified heart irregularity" and "supraventricular and ventricular extrasystoles" and "fits of tachycardia" (I49.8) although I said that I wasn't ill when I was a child. The doctor told me that I might have had hidden tonsillitis and prescribed me Metoprolol. I was told not to gain weight, to be careful with exercise and do a stress test once a year; then I was sent back to my family doctor who decided to check my blood for anemia - I'm currently waiting for the results and making a list of questions I should ask my doctor.

I'm somewhat worried because as I understand it, cardiomyopathy is a progressive disease, but nobody is telling me the risks and giving me the details I need. I don't want to find out ten years later that I really shouldn't have picked up horseback riding or that beta blockers are bad for your baby (I've been surfing the internet). What I really don't understand is where I43.0 falls on the list of cardiomyopathy types. Is it dilated or something else? Is I43.0 a completely different type? Or is it still unspecified?

Should I go to another cardiologist to get another opinion and maybe ask for some more tests?
Right now I feel like doctors are not interested in dealing with this and are knowingly withholding information from me, thinking that if I know all the risks I might get stressed. Am I overreacting?

*I'm about 5kg overweight and my family has a high risk of hypertension (usually becomes a problem after we gain weight, which is another thing we are prone to). My glucose, cholesterol and magnesium levels are normal.

Thank you in advance!
7 Responses
1137980 tn?1281289046
I agree w. Ken on this that alot depends on what type of cardiomyopathy you may have and if it for certain has been confirmed thru testing.  There are basically 3 types :

1.  Dialated Cardiomypathy or an enlargement of the heart
2.  Hypertrophic Cardio which is an overgrown heart muscle basically
3.  Restrictive Cardio which is a stiff heart muscle.

You need to have the docs after confirmation tell you what type it is so that you can proceed from there.  I would ask that as my first question, ask if it is 100% confirmed (none of that i highly suspect stuff because that doesn't cut it) ask them if they feel it is reversible, ask them what the treatment plan will be, what type of meds they will put you on, if it will effect the long term effects of your life such as having kids, physcial activity limitations, ask them what red flags that you should look out for if any that you would need to seek immediate medical attn., ask how they felt this happened to you, ask what percentile of risk that you are in for it becoming progressive, ask them why this wasn't caught before now, ask them how many patients he/she has dealt with that have this same type and if there is an expert in the field in your area that they can refer you out to for a second opinion for confirmation...those are just a few of my thoughts....
Avatar universal
One more thing: please add some questions I could/should ask my doctor! I really don't now what to think of this. I've never been able to run much and have felt more and more tired for the last two years, but I've never thought I might have a heart disease, although I have noticed some rhythm anomalies since the age of 13.

Lots of sunshine in your lives!
367994 tn?1304957193
I don't have reference for the numerical classification of cardiomyopathy, and don't what it represents.

I had dilated cardiomyopathy 7 years ago, and medication has returned my heart to normal size and functionality.  A dilated left ventricle almost always does not have heart muscle damage that may be caused by virus, etc.  Under that circumstance the heart muscle may cause the heart wall to thicken and that would be restrictive cardiomyopathy. It can be progressive and sometimes not.  

If you have any other information, you are welcome to respond. Take care, and thanks for sharing.

Avatar universal
Big thanks! :-) Now I know that I should ask my doctor if my heart muscle is already damaged - I had no idea that cardiomyopathy isn't necessarily a life-long disease.
367994 tn?1304957193
Thanks for the response.  I wish you well going forward.  
Avatar universal
I am very surprised that you got that dx. without any image test (echo, nuclear test, RMI..).

If you really had that, only Metropolol seems very poor medication to me.

In any case do not forget to ask for the status of your ejection fraction (EF) and evolution of sickness.

If really is a cardiomypathy, keep in mind that, in an small percentage, can be genetic reasons that can be tested in advance if you plan to have family.

If you do not get convincing answers, ask for a second opinion.

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