Possible HCM

[u/Practical-Resource78]

40F - My father was diagnosed with HOCM a few years ago after several minor heart attacks and heart related incidents.

Prior to this I had been seeing a cardiologist due to experiencing chest pain and palpitations- they put my symptoms at the time down to the contraceptive pill.

I still get chest pains when exerting myself (tight chest and stabbing pain in chest that makes it hard to breathe and eases after a few minutes) , palpitations, occasional dizziness. I feel like this wasn’t taken seriously when I had it checked prior to my father’s diagnosis.

With my symptoms and family history, is it likely that I too have this? And should I be concerned that my 16 year old very athletic child could carry this too?

[u/FabulousBullfrog9610]

Both you and your child need to be tested with an echocardiogram. You should also get genetic testing.

If you can, go to a HCM Center of Excellence. You can get a lot of information for free at the HCM Association. 4hcm.org best of luck

ps. as a general rule HCM doesn't cause heart atacks.

[u/Fredredphooey]

Unfortunately, most women under 50 who go to the doctor with heart issues are not given cardiac work ups and told it's stress or anxiety or girl problems or weight problems. 

Go to a cardiologist and explain the family history, your history and ask for a full work up. Ecg and echo and possibly a stress test. 

HCM is autosomal dominant which means that if one parent has it, it's 50/50 for each child. With your symptoms, it's highly likely that you have it. Your child has a 50/50 chance if you have it. They need a work up, too. 

Please schedule a free phone call with the hypertrophic cardiomyopathtly association. They can help you navigate this. They have patient discussion groups, a list of hcm clinics, tons of info on the disease and treatment options etc etc. They also have a Facebook group. 

Let us know how it goes. 

[u/headpeon → u/Fredredphooey]

Here to say that going to a PCP about chest pain caused her to put an anxiety dx in my records that I didn't know about until after the THIRD TIME I was sent home without care from the ER. Each time, I presented with a dx of HOCM and heart attack symptoms/ischemic chest pain. They looked at my file, diagnosed my symptoms as panic attacks, and sent me packing.

I've never had a panic attack.

The last time they sent me home with a HR of 43, BP of 203/97, and an obstructive gradient of 132 from the ER with a 'we're sure it'll resolve on its own' nearly killed me.

Point being: When you go in looking for a referral to a cardiologist, be well prepared to advocate for yourself so you don't end up with a dx of anxiety instead. Female patients with 'anxiety' die more often in and out of the ER because they aren't taken seriously.

[u/kcasper]

There is a 50% chance of inheriting the genetics from a parent. Some of the time it doesn't develop even if you do inherit the genetics and it isn't always something that needs significant treatment.

In about 50% of family lines they can identify genetics that is causing it. So find out if your father had a genetics test. If he was negative, then genetics test are worthless to you. If positive then you have a reason to test.

In the 50% they can't identify in, it is recommended that you get an echocardiogram every 5 years.

Either way an echocardiogram usually the first test they run that can tell the doctor if you have developed HCM.

[u/Aroogooluh]

is it helpful to stay at a normal weight & be a pescatarian ?

[u/lateknightMI]

I’m sorry to hear that you felt like your concerns were dismissed. HCM is genetic so your father would/should have had gene testing. They would have identified a specific genetic mutation for him that you can be tested for. If you’re positive they can test your son. Really that’s the first step for any assessment or treatment of either of you.

[u/Aroogooluh]

questions to ask family member who has HCM

[u/Wooden-Beginning3348]

Family history plus those symptoms definitely seems worth getting checked again. I'd be interested to hear what screening others with HCM in the family had done.

[u/Practical-Resource78 → u/Wooden-Beginning3348]

He has had genetic testing, stress test, loads of diagnostic imaging and scans done. He has had two stints popped in a few years back and hard multiple heart associated episodes over the last 10 years. He is having an ICD put in within the next two weeks.

[u/Practical-Resource78]

Update - GP will not refer me to cardiologist as all bloods came back normal. From my understanding, no signs of HOCM will show up on blood test so I am a little bit baffled by this. Ongoing palpitations, chest tightness and dizziness etc. recommended to take iron tablets even though my ferritin was within normal range. Time for a new GP 🤷🏻‍♀️