I am not a doctor...

1. Thickening of the heart muscle can happen to people as a result of their increasing fitness

2. What did your diagnosing doctor indicate as safe activities, given your condition?

-Physiojoe

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-Physiojoe
Instagram: @thephysiojoe
Cycling coach, Elite racer on Wooster Bikewerks p/b Wootown Bagels

I have a family history of HCM. My mom past away from HCM/CHF 2 years ago. Her brother a few months later. Since then, I've seen a cardiologist who does an EKG and echocardiogram to evaluate the condition of my heart every year. So far my heart has only become more healthy as i increase intensity / duration. I'm still young though, and my mom's condition wasn't even on the radar 5 years before she died.

I think the best thing you can do is establish a relationship with the best cardiologist in your area, get tested regularly, and don't be stupid.

Doctor said "no competitive sports"
Exercise important.
Still doing tests (stress test, MRI long wait list on that))

The doctor said no competitive sports because HOCM is the leading cause of cardiac death in young, healthy athletes. In my opinion, you should give up competitive sports. I understand triathlon is important to you, but this is russian roulette.

-MD but not cardiologist

@brandonk

How high do you allow your HR to go?
What does your race schedule and training look like?
Do you do any other sports?
Do you think its okay to peak your HR for short periods?
I read somewhere on SlowTwitch that someone with HCM was wearing a looper. Do you wear one (i don't know what it is)?

@solitude
I believe triathlons can be done safely with proper training and monitoring. How exactly I don't know but that's why I'm asking?

My dr has put no limitations on my HR for now. My first test measured my septum was 1.4cm, slightly thicker than normal. My most recent test measured at 1.1cm, which is considered "normal". So the dr said i'm allowed to "keep doing what I'm doing" which doesn't include limiting my heart rate.

I currently train 11hr/wk, broken down as 4:30 running, 3:30 biking, 2:30 swimming, and :30 strength/flexibility. I aim to do about 10 races a year, 6 running races in the winter, 4 tris the rest of the year. I've never done anything over a half marathon and an olympic distance tri, and don't plan to any time soon.

Looking at my last track workout, my HR peaked at 195BPM. This is probably around what my "max HR" is.

I have no idea what a "looper" is.

Again, I'm asymptomatic with no indicators of heart disease other than family history. I figure one day I'll go to the dr and something will change, and I'll have to modify my training accordingly. But for now, I'm "allowed" to do what I want, so I try to make the most of it while I can.

I would find a good cardiologist and talk to him/her at length for more details. I'm not sure what to make of brandonk's anecdote, since his septum is normal sized. Unless he's had genetic testing to validate that he carries the mutation, he probably doesn't actually have HOCM. It would be reasonable for you to get an echo to assess your septum and the degree of LV outflow obstruction and make decisions about training, racing, and monitoring based on that. But again, find a specialist and ask him.

I agree with Solitude.

It's important to distinguish between familial Hypertrophic Cardiomyopathy (which is genetic) and left ventricular hypertrophy which can be the result of some underlying condition, such as high blood pressure or cardiovascular disease.

After a few years of triathlons, during a routine physical, I had an abnormal EKG (inverted T) and in a subsequent echocardiogram I was diagnosed with left ventricular hypertrophy. My septum was 1.8cm. While my resting BP was not too high, my BP when exercising was very high (too high). I stopped endurance exercise, changed my diet (no processed foods) and was on blood pressure meds for two years. My septum went back down to 1.2cm. I had my children tested to be sure. It appears my heart thickening was a result of lifestyle choices, including both diet and the type and quantity of exercise, not genetic.

I have a regular physical and annual visit with cardiologist to continue to monitor.

I had a friend who died in his 30's while sleeping of the genetic variant. He had been a college soccer player. Had no symptons, did not know he had the condition. His heart was a ticking time bomb. He didn't know it. After his death, his two year old daughter was tested and it was determined she too had the disease.

If your condition is the genetic one, what's more important, doing Tri's, or living a long life? You may have to choose. If it's not genetic, there may be lifestyle choices you can make to do Tri's safely, but you need to talk to a doctor about that. It's not just your heart rate, your blood pressure (resting and in a stress test) and other things should be watched as well.

P.S. I used to do 10 to 15 Tri's per year. Now do just one, a sprint distance for fun. Found other types of exercise to keep me happy.

What lead you to the conclusion that you actually have the condition? Symptoms? An irregular rhythm during a routine physical?

After watching a movie and or sitting on a couch, I would stand up and always stumble, feel light headed, I have to stand still for a few seconds. Not passing out but close to it. I thought this was normal it would happen about twice a day. My girlfriend got me to get a check up.
I don't know the name of the check ups. Second test they found an irregular heart beat. Another test they took an image of my heart (not MRI, that's still to come) and that confirmed it, I believe he said 1.4 was the thickness.
Doing a stress test tomorrow.
Now that look back the one symptom that stood out was shortness of breath. I did some short races 5/7km I was out of breath the whole way and it held me back I could have gone faster if it wasn't for the lack of oxygen (at the time I thought I just had low stamina, even though I trained lots).
Edit: writing on a tiny cell phone screen, excuse the errors

@giddyup
I'm sure part of me is in denial and the other part can't stand the thought of exercise with no goal in mind.
I am talking with my doctor and we still got various tests to do.
In my head I believe a Marathon or an Ironman would be okay since its a slow pace and the heart rate stays low (bucketlist, don't care about the time (now anyways) ). I'm sure most would disagree with me on this.
Your friends story does scare me...

Standing up and feeling light-headed (usually orthostatic hypotension) is fairly common but the shortness of breath would be a concern. It's probably a good thing you got checked out.

I'm curious about why you think heart rate is important. Mine has always been low. The issue for me was my blood pressure was much higher than where it should have been when exercising. I found this while doing a stress test. So when I was on a 5 hour bike ride, two hour run, or doing a half ironman, the high blood pressure was the issue. My heart rate was right in the range it was expected to be. As a result of this, I tend to lean towards short and fast, rather than long and slow.

I'd certainly ask your doc about blood pressure vs. heart rate. You should know what your BP is at rest and during a stress test. If BP is your issue, I'd take a hard look at diet (I've had great benefits from going Paleo - whole other subject). You said you measured 1.4 cm thickness. While that is thicker than normal, I'm not sure that's familial HCM. If it's not, then you may have more of an opportunity to work around it. Might also be worth looking for a cardiologist who is a triathlete. I found a few in my area, though I never talked to one.

I totally get the thought of exercise with no goal in mind. I was the same way. I was totally bummed initially. But I found other exercise goals to keep me going. I encourage you to continue to investigate the issue. It's important you get as much information as you can. I've had many great doctors, but I've also seen situations when doctors didn't agree, and getting a 2nd, 3rd or 4th opinion made all the difference in the world. In my case, my doctor said my heart would never get smaller. He ended up eating those words <grin>.

Interesting reading here in this thread.

HCM is obviously a very serious problem. It's a frequent cause of sudden cardiac death and may account for nearly half of all fatalities at long-distance running races. HCM may also be responsible for some of the triathlon fatalities--the exact proportion is not yet known.

That said, the diagnosis of HCM may not be straightforward. Absent a "positive" genetic test we rely on a combination of diagnostic tests to establish the diagnosis. It sounds like you're in the middle of your evaluation.

There are certainly cases where the diagnosis may be uncertain. There are other threads here at ST that speak to that issue.

From an athlete's perspective, though, it's important to know that sudden cardiac death can be provoked by exercise....hence the restrictions of nothing more strenuous than, say, bowling or billiards.

Like others here have suggested, get evaluated completely, consider your doctor(s)' recommendations, get a 2nd opinion (expert) opinion if that's helpful, and then make informed decisions about exercise.
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Larry Creswell
http://www.athletesheart.org, @athletesheart

@giddyup
I always thought blood pressure and Heart rate were interlinked. My blood pressure is on the low side that was one of the tell tale signs for them to look further.
I guess now that I think about it, if the heart rate goes up but the heart muscle gets in the way pressure would stay low or get lower the harder the muscle worked/expanded.
I did the stress test a few days ago (run on tread mill, after 3 minutes speed and incline increases), I wanted to keep going but after my heart rate reached 160 they shut it down.


So what exercise goals do you have now? Are there any sports you participate in?

@lcreswell
Billiards, bowling... uhgg

Is there a list of safe sports?

OK you reached HR 160, but for what diagnostic reason did they give you for stopping the stress test? Such as failure of BP to increase, a fall in BP, or changes on ECG? If none, your test is inconclusive... no exercise-related adverse findings.

The conventional guidelines for athletes with HCM come from the Proceedings of the 36th Bethesda Conference. I created a page at my blog with the "Classification of Sports" table from those Proceedings:

http://www.athletesheart.org/...ification-of-sports/

Sports are categorized by their "static" and "dynamic" components. The consensus expert recommendation from the Proceedings was to restrict athletes with HCM to sports of low static and low dynamic components: billiards, bowling, cricket, curling, golf, and riflery.

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Larry Creswell
http://www.athletesheart.org, @athletesheart

Interested to know the outcome. I'm going to pitch in, as I've NOT been diagnosed with HCM despite their being a strong likelihood of my having the condition. My parents won't be tested, so it can't be confirmed and the tests show only a little thickening, not to worrying levels, with no evidence found in any tests other than some pleasing results in relation to my overall fitness (as you'd expect given I train about 30-40 hrs a month in a good one).........but several dizzy spells, followed by an irregular ECG, the slight thickening led to me being in a position where I was ABOUT to be diagnosed until I outlined the sports I like, the fact that it would completely change my life if they were SURE, as well as the insurance implications, and this led to me being written a woolly letter about being cleared, with no evidence being found (which was true). If I hadn't have liked triathlons, and not said a thing, they'd have diagnosed me because the impact on my life would have been minimal. My wife was in the meeting with the doctor, and still isn't happy about me doing what I do, but I refuse to not live my life doing what I like to do, all of which in theory is healthy.

The doctor did say to me ideally no Marathons (I plan to do one, but to train a LOT and keep the intensity low focusing purely on plodding endurance), no Ironmans (which I agree with, and I pulled out of my 1st I had already booked to do)......so I've taken some notice.

I've never got dizzy swimming (well once on a pace set, but now I focus on fast as poss but steady, never out and out sprinting) or biking...........albeit running I did twice, stopped, recovered for 2 mins then picked it up again, and the only times it's ever been really bad were outright sprinting from a walking start, once playing hide and seek with my daughter, couple of times at football. I've given up after 20 years of competitive football (or soccer :-) though.

So I've pledged to manage my intensity basically, but I'm not quitting doing what I love. Doing London to Paris on a bike in 24 hrs for example in a couple of months, the wife really wasn't happy about THAT, but the heart rate on a bike never elevates, as I'm not Mark Cavendish into sprinting or Pantani up those mountains. It'll be fine!

This is the only thread I've found about HCM, so it's been really interesting to read. Thanks guys.

Hi,

Very interesting to read all of this thread.
I was diagnosed with hypertrophic cardiomyopathy in January which came as a big shock to me as I have no symptoms and no family history of the condition. It was found when doing an exercise stress test for a sport medical which showed my abnormal ECG pattern. Since I have had a doppler test, MRI and 48 hour Holter test all which confirm the cardiomyopathy. I am 29 and have competed in sport all of my life. I have done 2 Olympic distance triathlons, cycling races, marathons, trail running and was booked for my first 70.3 in June 2020 which due to Covid has now been changed to June 2021.
I have a wahoo heart rate monitor that I sometimes wear for exercise and my heart rate is normal when exercising. I too am trying to figure out everything I can so that I can still do triathlon and competitive sports as I feel I am too young to give up on something that brings me so much joy.
So far, I have been told by cardiologists not to do vigorous exercise which I am finding a challenge to define. At the minute, I am trying a more calm approach to exercise where I always do but I listen to my body and don't push myself but really I want to race. Here in Italy I cannot race without an approved sport medical but my 70.3 is in Austria.

Disclaimer, I am NOT a medical doctor. But I have an advanced degree in science and I have a family history but am not diagnosed myself.

First, HCM is a spectrum disorder. Some people will show the phenotype already at a young age but live relatively healthy lives well into their 80s. Some will show the phenotype later in live and their heart function will deteriorate quickly and they eventually die prematurely. In order to know the trajectory you are on it is very important that a baseline is established and that you have regular checkups with your cardiologist. Also, I would recommend to run a genetic test in order to find the disease causing mutation. Not in all cases will a disease causing mutation be found but if one is found a prognosis could be easier (given that you can take that knowledge).

The likelihood of suffering from a sudden cardiac event during exercise is not entirely clear and there is debate in the literature. To me it seems that the older you get the less likely it is to die during exercise. However, this could also be because HCM patients who are older do not work out that much any longer. Some studies have shown that HCM is not the most prevalent condition in athletes who died ( https://pubmed.ncbi.nlm.nih.gov/27151341/)

I would be cautious in all out efforts. Less than that might be fine, depending on your ECG. Definitely get an ECG under load and talk to more than one cardiologist, if necessary.

In future wearable defibrillators could also be an option to safeguard higher risk situations ( https://www.elementscience.com/product/ ).

Good luck.

I deal with HOCM patients regularly. It is definitely a disease to respect and be cautious with. The abnormality is generally twofold. One the muscle is thickened and shaped abnormally which causes abnormal flow (more on this later). The other is that with this structural abnormality is an abnormal electrical substrate which can be vulnerable to arrhythmias.
The muscular abnormality comes in several flavors, the most common of which is an enlargement of part of the ventricular septum. This causes acceleration of blood flow as the blood enters the aorta. This can cause the mitral valve to leak, leading to regurgitation of blood into the atrium. The problem is exacerbated by high heart rates because now the stroke volume has to flow even faster during ejection. It is also worsened by dehydration, (hypovolemia,) both states are obviously possible with athletics.

The thickened heart muscle also has a higher demand for oxygen, which puts it at risk for ischemia( insufficient oxygen). If it is sufficiently thick HOCM patients may benefit from having an implantable defibrillator placed (similar in size to a pacemaker) to prevent lethal arrhythmias.

There are several therapeutic pathways. 1. Medical management, often with beta blockers to control the heart rate. 2. Alcohol septal ablation: an interventional cardiologist uses a very small catheter to the septum and injected a small amount of alcohol to therapeutically kill a small portion of muscle. 3. Septal myectomy: surgical removal of a small portion of the ventricular septum.

I have personally seen patients nearly die from hypovolemia or tachycardia (or both), this is a disease that commands respect.

It is also important to parse between Hypertrophic cardiomyopathy (HCM), and hypertrophic obstructive cardiomyopathy (HOCM). They are related but subtly different.

I cannot reiterate strongly enough that this is a disease that warrants caution. Be very explicit about what your fitness goals are and that you plan on training for an Ironman when talking to your cardiologist. I would avoid races in hot climates.

MD. Anesthesiologist.

Just realized this was an Uber necro-bump from 2013.

I am not a Doc, I have not read this entire thread, but I've read enough.

in 2012, I went to a cardiologist to check the box "Consult your physician before embarking on an intense fitness plan.." I had no symptoms (major % of HCM cases are diagnosed post-mortem), and had no family history. I was MISdiagnosed with HCM. It was a long journey of a year along with detraining to shrink my septum, etc..

my advice is to take it seriously, get answers, stand down from exercising until you have answers. Literally go for a 30 minute brisk walk every day and that's it.
if you DO have it, talk to docs about getting an ICD. IF you are a candidate for one, that can be your ticket to exercise, but I wouldn't get one for the sake of being able to exercise. In my journey I discovered a study of athletes who were competing against doc advice who had ICDs being done at the time by Yale. I met a woman who has been clinically dead 3x. for me, in hindsight, the game of Tri I could have done without, strenuous hiking and skiing are things I would never want to give up.

resources - lcreswell, already on this thread is a busy guy, but an incredibly generous and helpful one at that and is one of the leading experts on cardiac care for Triathletes.
I would also highly recommend getting in touch with Dave Watkins at the Ironheart foundation, he can help you find the right docs for this. https://www.ironheartfoundation.org/

good luck, be smart & safe, figure this out so you can have a long life.