Heart Echo

[KittyMama]

Hi everyone,

I recently ordered a copy of my medical test results. Earlier this year I had a cardiac ultrasound (echocardiogram) and it said that my stroke volume, cardiac output, and cardiac index were all too low. I don't have the results in front of me at the moment, but as I recall they were all just a little below normal. After I had the test done I asked the NP (who had told me everything was normal) if there was anything even a little interesting or unusual about my results, and she said no, it was all completely normal. (seriously... I really hate the medical profession).

So anyway, here is why these numbers kind of worry me:

I did the echo lying down. This is my best position! I've read that people with POTS tend to have a stroke volume that goes too low when they stand, so if mine is starting out low and then going even LOWER when I stand... that's kind of scary. Also, I sometimes get swollen ankles. Actually pretty often. Years ago I was worried I might have heart failure, and I asked a doc about it; he said "your ankles aren't swollen so you can't have heart failure." So now that I'm getting them I get a bit nervous sometimes.

In some ways I almost don't want to know if something is really wrong. It's disturbing because I was actually feeling well the day of the echo. I wonder what it would have looked like if I'd gone in the day after my TTT (when I felt truly awful).

Do you think it's something to worry about?

[andybonse]

If you had heart failure your ejection fraction would be low even when laying down.

Exercise will increase sizes if too low

[davecom]

I was afraid too of heart failure when I first got sick last year and my LVEF was a little on the low side across two echos (and I have some congenital heart conditions so I was doubly worried). 6 months later, another two echos showed it back to being well within the normal range, so the doctors theorize it was a virally induced reduction (perhaps even the virus that caused my sfn and therefore my POTS according to their theory...).

In my case I was told to be assured that even with the heart, numbers just below the normal range are not something to be worried about, even though I was deathly worried myself - and rather something to be monitored to see if the trend is generally downward. Obviously I would share your concerns with your doctor - but according to the highly controversial Levine article, lowered stroke volume, etc is consistent with POTS and can be improved through exercise:

http://hyper.ahajournals.org/content/58/2/167.full

Hope this helps.

[andybonse]

Exercise should never be neglected in POTS, over 6 months you increase:

Heart left ventricle chamber - your heart fills and pumps more blood per beat, get very fit and this can be a massive difference

The heart walls get thicker - it can withstand higher blood pressures and pump more efficiently

New capillary veins and nerves grow to provide more oxygen to your body

blood volume increases by 20%

your lungs adapt to take in more air

more mitochondria develop giving you more energy

Theses are just a few benefits, which will benefit any pots person I believe. I was sedentary for years since I got my car and my pots developed and got worse due to office job also. I would never dream of not exercising again how I neglected my heart!

[badhbt]

I was totally opposite. I was working out hard when it hit me. Funny how we are different.

[AshleyPooh]

If you are worried about the echo results, I would get a second opinion. The heart isn't something to play around with, and sometimes doctors can flat out be wrong. I'd never have known about my NCS if I had listened to my original doctor, who said having 70s/40s blood pressure was okay in people who were small like I am, and athletic( except I'm not athletic at all and thought she was insane for even suggesting it)

Second doctor thought it was anxiety, but agreed to get me a cardiologist b/c of the blood pressure ( even though she'd never seen it low at the office, b/c I get super nervous around docs)

Finally it took a cardiologist and a tilt test to prove I wasn't crazy. Never accept a first opinion if you aren't comfortable with it.

Also, I would point out that when I got my echo done, everything looked good, except for one thing: my heart walls, the sonographer said, were too thin. He said he could tell I had low blood pressure by seeing the heart walls. So I assume that if the medications keep my blood pressure up, the heart walls should improve, along with exercise. Not sure how much is influenced by our lack of exercise, or blood pressure problems, and what is actually a heart problem.

[KittyMama]

hi everyone,

sorry, I got distracted and didn't reply as soon as I meant to.

andybonse - actually that's not true with diastolic heart failure, which is part of why I was thinking about it.

davecom - that's actually pretty reassuring, because I did have a lingering cough from a viral infection when I went in for the test. Hopefully that's all it was. As for the results being only a little below normal... I looked again at my results and although that's true for stroke volume and cardiac output, my cardiac index was 2.1 (normal is supposed to be 2.8-4.2). That measurement is a little weird though because it's based on calculated body surface area, and I wouldn't be surprised if that makes it less accurate.

ashleypooh - I'm moving to a new country in a week (!), so soon enough I will have to find a new doctor. I will be relieved if another doctor says it's nothing to worry about.

about exercise, which a lot of people mentioned - it's really confusing to me. When I was a senior in high school I exercised 5-7 days a week for 30-45 minutes on an exercise bike. I pushed myself hard and was always sweaty and red-faced at the end of it. Then late in the year I was in a "walking" class (P.E.) - we just dressed in our gym uniforms and walked around town as a group. It was REALLY hard for me to keep up with the group and I was always out of breath when no one else was. It makes me wonder now - was it difficult for me because it was a standing-up exercise? I really don't know... but I still can't walk the way other people can even when I'm feeling good.

Back at this time, which was before I really got sick (though I already had the hint of a fainting tendency), my resting heart rate was 60. I did a demonstration in health class once when I was totally sedentary (sophomore year) and even had a standing heart rate of 60. Then years later, after I had suddenly gotten sick and had everything get 1000 times worse, my resting heart rate climbed up to about 80. I'm wondering if this might have been a response to my stroke volume, etc. getting lower, because apparently the first thing your body does when your heart gets inefficient is to make it beat faster. But here's the problem: I was more active at that time than at any other time in my life, probably. I had a job that required me to stand and move around and walk up and down stairs. I didn't have a car so I walked and biked everywhere I needed to go. And I went running every day! So... since I do have exercise intolerance now and there are a lot of varying opinions about Levine's conclusions... I hesitate to exercise, wondering if exercise actually damages my heart. But at the same time I don't want to make things worse by not exercising either... it's really confusing and I don't know who I could ask about it who might be well-informed about this particular problem. (it seems like most doctors are of the opinion that exercise is always a great thing for everyone, which I know isn't true.) I know this isn't a problem you guys can solve for me... probably no one can except maybe some of the "famous" doctors, if I ever get the chance to see one.

but anyway, thanks to all for responding!

[davecom]

Re: Exercise

I agree with you - nobody can solve it for you here and your concerns about your heart are legitimate. You need to get the okay from a cardiologist you really trust. If that means you have to see three of them, so be it. But then if they all say exercise won't damage your heart, you're right to want to try to get active again - it can't really hurt you since you can just stop whenever you want to; that's the great thing about exercise - if it's hurting you, you can just stop.

[KittyMama]

thanks Dave - I appreciate that.