Diagnosed by chance

Posted by raglan10 @raglan10, Jun 27 6:09am

Hi, I was asked to take part in a medical trial and as part of the trial, I did bloods, ECG, Echo and cardiac MRI. It was from the MRI that I was diagnosed with HCM.

was told it was mild and I could live a normal life [I am 74]. Not getting any treatment, can do walking etc. but find I can only do less than an hour in the garden.

Am interested to know if anyone else is in my position, i.e. no treatment. Wondering should I follow up on it.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

brumasterj | @brumasterj | Jun 27 7:47am

Do you know if its obstructive or non obstructive HCM

There are alternitives to help with symptoms

Highly recommend talking to COE about your diagnosis:)

Debra, Volunteer Mentor | @karukgirl | Jun 27 10:23am

Hello @raglan10, and welcome to Mayo Clinic Connect.
I'm glad you found this online support group for Hypertrophic Cardiomyopathy. There is a lot of information on here to read from other folks just like you.
Treatments vary according to medical practitioners and no two people are alike, and your cardiologist says your condition is mild and doesn't need treatment...but the fact that you are wondering may be an instinct inside you telling you to get a second opinion.

I would not hesitate to get a second opinion, if for no other reason than to put your mind to rest and know you are doing everything you need to to confirm your current condition is indeed mild.
I would make certain that your cardiologist is completely up-to-date on all things HCM, and if not be sure to find one who is.

Seventy-four is still young in my opinion, and as long as you have pretty good health now, knowing how fast HCM can progress to HOCM (the dreaded obstructive HCM) it's worth the effort to be your own best advocate.

Are you close to a COE/center of excellence? Here's a handy site to find out COEs in your state:
https://www.4hcm.org/
And here is another link to Mayo Clinic/HCM:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
It seems like a lot of patients are not diagnosed timely, or have HCM missed for periods of time, so it's on you to to learn as much as you can about what you have so you can be your own best advocate!
Have you been able to read up on HCM here on Connect?
Do you know the results of your current echo? Like the septal thickness?
When do you see your cardiologist for your next echo?

walkinggirl | @walkinggirl | Jun 28 4:03pm

Many people learn that they have a condition from a medical analysis that is focused on something else. The good thing is that catching something early is likely to result in early treatment and a happy outcome. As you read up on HCM, you will learn that it's inherited and you may have been fortunate to inherit a type that is quite mild. All of us with HCM have had it all our lives even if we were unaware until an older age, I was diagnosed at about age 60. Up until about 2017 (age 71) I was leading a very active normal life, around that time the obstruction became more problematic. Each of us has a different tale to tell, some like me were diagnosed quickly and for others it was a frustrating journey. I encourage you, as others have, to read much and become a patient of a cardiologist with good knowledge of HCM. BTW, I too, took part in a medical trial - to duplicate the results that Tamoxifen lessened the likelihood that people susceptible to breast cancer developed that disease.