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afraid that I may have Hypertrophic cardiomyopathy
Thought I was very heart healthy till I took an Lp(a) test several months ago. Lab result was 199 nmol. Did not believe it and took another. Result was 207 nmol. Still in disbelief and took test one last time. It was 240 nmol!!! So I was referred to the cardiologist and he did an echocardiogram for screening.
64 year old woman, 98 lbs and 5 feet. Echocardiogram showed I had mild LVH, left ventricular wall of 1.2 and left ventricular septum of 1.1. He thinks the cause is either hypertension, obstructive sleep apnea or athlete heart so he recommended I do not do any moderate or intensive activities for 3 months and then recheck to see if walls have decreased or get back to normal. Seriously I doubt it will and this non exercising other than a slow walk is bothering me mentally and physically.
Just wondering what is the next step to diagnose HCM if it LVH is not due to athlete heart. Does anyone know?
(Just so upset now cause I have many genetically inherited problems and I don't think I can handle anymore genetic problems)
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Hi @lpaelevated4, and welcome to Mayo Clinic Connect.
I am glad you found this online support group for Hypertrophic Cardiomyopathy/HCM.
I was diagnosed at age 62 with obstructed HCM after several years of being diagnosed with a medley of heart conditions and diseases. None of which I had. It took three outside-my-area consultations to be correctly diagnosed with HOCM.
I am telling you this to emphasize that your cardiologist must be up-to-speed on all things HCM and HOCM, and it sounds as though your cardiologist is unclear what exactly you have going on.
It's easy to say "don't get upset" about maybe having a congenital heart disease...but you really don't know right now, so try and focus instead on getting some answers to your questions.
One step at a time!
We can't give out medical advise here on Connect, but we can share our stories and experiences and make suggestions.
My suggestion would be to not be afraid to learn the truth, and not be afraid to seek a second or even third opinion from another cardiologist...even if it means going out of your local area, if you are not near a Center of Excellence (COE).
The only way you will know what you may or may not have is to continue to seek out a specialist in HCM. But then again...you don't really know if you even have this.
Put your mind at rest and be your own best friend! You won't know unless you are persistent and take charge of your own medical care.
You mention your cardiologist sited a possible condition of "Athletic Heart", I found this online from the Cleveland Clinic that has some good information you may find interesting:
https://my.clevelandclinic.org/health/diseases/23920-athletes-heart
Are you very athletic and active?
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8 ReactionsAlways amazed at your approach on giving sound advice!
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2 Reactions🙂
I am 64 years old now. Very physically active since childhood. Ran marathons, cycled across the USA, and running up mountains - all in my 30s and 40s. I travel a lot so when I do , I really don't exercise much but back home, within the last year, I worked out about an hour to an hour 1/2 5 to 6 times per week. Basically stair master and weight training. (just to maintain).
If it is not athlete heart , hypertension nor obstructive sleep apnea, what could be the cause of mild left ventricular hypertrophy? I question the accuracy of the sonographer and radiologist for the readings as my right atrium and aorta were not visualized well. Not sure how they came to the conclusion of NO aortic stenosis because from what I have read, an Lp(a) of 240 nmol ( about 95 to 97 percentiles) cause CAD and aortic stenosis.
I am under the S. CA Kaiser HMO for now till I turn 65 soon. I am hoping to go into medicare original plan with medigap G and find myself a specialist. Where can I find recommendations for a preventive cardiologist or someone who thinks outside the box?
When I inquired Mayo Clinic for a cardiologist appt, I was told that they accept Original Medicare but I need to register with a referral and that there is NO guarantee I will be accepted.
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1 ReactionSounds like you are super healthy and have done so many things and been to lots of places in your life! 🙂 thats so awesome! Unless i have missed something your not slowing down too much at all and are still very active! Good for you! The only advise i would give you and its jot much, but if your not being effected physically by what some doctor told you about your heart thats great! Keep doing what your doing and when you do feel like your heath or your workouts are suffering reach out to a COE on HCM! If its eating at you psychologically reach out to a Center that specializes in HCM
People with HCM or obstructive HCM can lead very normal active lives i did for years! It wasnt till i was 48 till i started gradually being effected by it and then went another 9 yrs being misdiagnosed! It was frustrating because i was a very active runner and mountain biker, my runs and bike rides started suffering more and more each year!
I was happy to finally been diagnosed withHCM and severe LVOTO! At least i knew i wasnt crazy and there was a fix:)
Best of luck with everything and i hope you get your answers your looking for
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4 Reactions@lpaelevated4
I like you was always and athlete.
What was your ejection fraction?
I was just on Cleveland Clinic cardiology and was looking at athletes heart. Could this be your cause. I was dianosed with cardiomyopathy that caused LBBB and electrical issues in my heart. With a ICD/Pacemaker and some great medications my Mayo specialist put me on my EF has been stable for 10 years.
When I was on Cleveland Clinic one of the tabs was request and appointment. You can't do any better than Cleveland Clinic in Ohio or any Mayo Clinic.
You mentioned Mayo appointments. I have been a patient at Mayo Jacksonville since 2006. I did a request for second opinion back in 2006. I saw a EP who referred me to a Mayo heart failure doctor. I have been a patient of Mayo Jacksonville since.
If you are having issues with getting into Mayo Cardiology consider asking for a second opinion. Or can you get an appointment with a primary care doctor and then asked for a referral. Just trying to brainstorm so ways to consider.
Good Luck
All of the previous commentators gave extremely sound advice to help guide your thinking and progressing to the next steps in your quest to get to the bottom of this. I am STILL truly astonished that it sometimes took years for some people to get a correct diagnosis whereas, the local cardiologist I was fortunately assigned to has a special interest and training in HCM. I was closely monitored for many years while leading an active life and was referred to Mayo when surgery at age 75 was necessary. Even if you, like me, do not live near a COE, there may be cardiologists nearer who are well versed in HCM. Yes, we all can identify closely with the overwhelming and scary feelings! The genetic part: None of us have any control over that but knowing is a kindness to your blood relations so that they may make appropriate decisions and actions for their own health care. Please keep us in your loop as you move along on your journey.
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5 Reactionsejection fraction is 60 to 65 percent.
thanks for suggestions
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2 Reactionsdo you know if Cleveland Clinic cardiology is just as difficult or not for appointment compared to Mayo Clinic? When I turn 65 years , I will be on Original Medicare with medigap G so will allow me to see almost any doctor without referral.
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1 ReactionIf you don't mind sharing, what diagnosis did they think you had before you were finally diagnosed with HCM? Did the symptoms gradually appear or it just happened?
Are you still able to run and mountain bike?
What is severe LVOTO? what does this stand for?
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