afraid that I may have Hypertrophic cardiomyopathy

Posted by lpaelevated4 @lpaelevated4, Jul 5, 2025

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)

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

jc76 | @jc76 | Jul 6, 2025

In reply to @lpaelevated4 "ejection fraction is 60 to 65 percent. thanks for suggestions" + (show)

@lpaelevated4
Oh would I love to have your ejection fraction. Mine is 25-30.

When I was first diagnosed it was 48. It kept going down and down until I got second opinion at Mayo Clinic and started treatments there. There I got a ICD/Pacemaker and was put on some really great medications. Has not all bee roses since then but EF has not gone down any further in 10 years.

I was told by my heart failure doctor and my EP that me being in such good physical condition helped my body compensate for the low EF and have only minor side effects. I am 78 now so hard to see if being so much slower is my cardiomyopathy or just getting old.

jc76 | @jc76 | Jul 6, 2025

In reply to @lpaelevated4 "do you know if Cleveland Clinic cardiology is just as difficult or not for appointment compared..." + (show)

@lpaelevated4
I don't think Cleveland Clnic is as difficult. I think Mayo Clinic has growing pains without the adequate increase in speciality doctors.

While a patient at Mayo in 2006 I had a lead come out of my heart (ICD/Pacemaker). Mayo back then did not have a hospital at Jacksonville. I wanted to have the Da Vinci robotic surgery. I contacted Cleveland Clinic and they were ready to set me up with a cardiologist that does robotic surgeries for issues like this. Actually gave me his name, contact information, etc. So I don't think as hard. I was just on Cleveland Clinic site about cardiology and saw a tag saying "Request an appointment."

Several years ago now Cleveland Clinic had a virtual visit where anyone could send questions to the cardiologist and get live answers on the virtual seminar. They did away with that program.

When I went to Mayo Jacksonville I did not have a referral. But it was a request for second opinion. I was so impressed asked to take over my treatment and they said yes. But that was direct in person conversation with the specialists.

Mayo Jacksonville does take original medicare but limits the amount of patients enrolling in primary ongoing care. I am not sure about seeing specialist and restrictions on medicare. I do know that Medicare allows Mayo to charge Medicare patients more and paid more by Medicare as listed as a "Speciality Health Institution."

brumasterj | @brumasterj | Jul 6, 2025

In reply to @lpaelevated4 "If you don't mind sharing, what diagnosis did they think you had before you were finally..." + (show)

HCM has Been something i have all my life according to the Mayo Cardiologist!
I pretty much lead a normal active life! I knew from my years of playing football something wasnt right though, after failing a football physical because the doctor said i had a heart murmur my mom drove me to another doctor across stateline and he passed me. my heart would go into fibrillations during practice and games and it would last for hours! I never would say anything to anyone afraid of sitting! These lasted up into the Navy anytime i would make fast sudden moves my heart would take off.
It finally wasnt much of an issue as i got older.
By the time i was in my late 40’s i was active mountain biker and runner
At sone point i started suffering on my runs, i would go for a run and couldnt complete it, it would be a bubch of good runs and then i would have a day to where i could not do a 1/2 mile! Hard to breath legs would get tight, jaw pain! I started talking to my primary doctor about it over the next few years and letting him know these runs are getting harder more bad days than good days, just looking at my vitals i looked healthy he said it could be allergies, or exercise induced asthma or im gettig up there in age to slow down some when it happens. I finally quit running and stuck to biking but it started doing it there too!
Fast forward to 2022 went for a easy walk one morning and had to take several breaks all the same symptoms from above
Went to ER they ran all kinds of test over 3 days and basically the cardiologist after doing ECHO with no stress said i was showing early stages of cardiovascular disease. Veins leaving heart were too narrow
Put me on a beta blocker called carvedilol
After a few months went back for follow up and i told the cardiologist my symptoms have gotten worse being on the medication! He said i needed to stay on it because they needed to dilate my veins leaving my heart!
Come sept 24 went on a 13 mile bike ride and really struggled! 3 days later was hurting in chest, ribs, and traps went to see my doctor who said i had pleurisy, ran ECG on me since i had chest pain did not like the reading sent me to ER
Again 3 days in hospital they didnt find anything and released me, they called me that evening and said i had pneumonia!
30 days later felt good enough to go on short 5 mile ride rode real easy
That night i could not breath went to ER O2 was 72% diagnosed with heart failure!
Had a smart doctor in there that told me she looked at my history and said i needed to go for a second opinion!
Called mayo they got me in fast!
Diagnosis HCM with severe LVOTO left ventricular outlet flow obstruction
He said i had been misdiagnosed for years and carvedilol was the wrong medicine to put me on it actually exasperated my symptoms!
Doctor told me with my active lifestyle surgery was my best option Septal Myectomy! He put me on Camzyos to get me stronger and feeling better for 5 months before my surgery.
Im 17 days out from my surgery and the surgeon said it was the right decision!
He said i will be doing things i havent done in years!
So many of my symptoms that i would talk to my doctor about and it was missed all these years!
Long story but its been a long several years of frustration!
Looking forward to the future:)