Backwards trend in Echo Measurements

[Teapotimus]

Greetings, I've noticed something interesting in my TTE measurements over the past nearly two years.

To start, I was diagnosed with severe AS and moderate AR along with a bicuspid valve when I was 12, but didn't have any knowledge of it until a couple of years ago at the age of 30. As a result I only have a single TTE from when I was 12 and no other imaging. At 30 I had a TTE done as a one-off referral from my new PCP, then another done 4 months later when I established care at the only ACHD clinic where I live. These two TTE's were nearly identical in their findings of moderate - severe stenosis and regurgitation.

TTE from age 12

Since then I have received TTE's on a biannual basis and recently completed my fourth, (third from the same facility). For fun I threw a number of the parameters into Excel to see what it looked like, and I'm seeing the exact opposite of what I would expect to see based on all of the literature and anecdotes about this disease.

My AVA has increased by 37% (from 1.22 to 1.67), LVIDd has decreased from a peak of 5.9 which I was told is dilated to 4.96, >14% decrease, and well within normal range.
Peak and mean gradients have both decreased by 13% and 14% respectively, and Vmax is down 8% from 4.42 to 4.06, nearly in the moderate range at this point, and LVEDV has gone from a peak of 115.52 ml/m^2 to 72.46 ml/m^2. There appears to be a well established trend towards the severity of my AS improving, and my LV improving as well.

I'll also mention that over these last two years I've markedly increased my physical activity as well, especially over the last year or so. I've gone from beginner HIIT cardio to advanced HIIT cardio as well as weightlifting a few days a week, and feel better than I have in quite some time.

Last 3 echos plotted in Excel, first one was omitted as it was from a different facility and nearly identical to my first TTE at OHSU on 8/6/2021

Has anyone else had results like this? From my understanding this can't happen, but the imaging is showing that it is in fact happening, and my cardiac output and feeling correlates with these measurements. I will say I've read into the K2 angle for AS, and have dutifully taken a large dose daily for almost two years now, along with a few other heart healthy supplements.

 

[Teapotimus]

Just an update to further the mystery.

Had an appointment a week ago with my Cardiologist to go over my most recent echo.

He mentioned that I had proved their whole heart team wrong and they were certain I would need intervention within 6 months from my first appointment. He also told me he would be fine with reduced screening at this point, from twice yearly to an annual appointment. I chose to stick with the twice yearly echo's, but this whole thing is incredibly confusing.

Not entirely sure if biannual screening is necessary at this point, I feel great, continue to exercise 5+ days a week without issue. Considering another opinion but I've already spoken with two surgeons and three Cardiologists at a total of three facilities, not really sure if I should just accept that this is my heart and how it's been practically my whole life and it truly isn't an immediate issue, or if everyone I've spoken to is just missing something.

 

[carolinemc]

Just an update to further the mystery.

Had an appointment a week ago with my Cardiologist to go over my most recent echo.

He mentioned that I had proved their whole heart team wrong and they were certain I would need intervention within 6 months from my first appointment. He also told me he would be fine with reduced screening at this point, from twice yearly to an annual appointment. I chose to stick with the twice yearly echo's, but this whole thing is incredibly confusing.

Not entirely sure if biannual screening is necessary at this point, I feel great, continue to exercise 5+ days a week without issue. Considering another opinion but I've already spoken with two surgeons and three Cardiologists at a total of three facilities, not really sure if I should just accept that this is my heart and how it's been practically my whole life and it truly isn't an immediate issue, or if everyone I've spoken to is just missing some.

It is okay for annual echo's as long as nothing is getting worse. I have had 6-month echos before for two years after Bypass and then it was reduced to once a year. Sounds like you need the cardio to explain the change from twice a year to once a year. My concern would be from once a year to twice a year. But we are all different and how we accept the changes also is different. You go with what you feel is right. I was going to yearly exams for years. After second bypass, since I have St. Jude's valve, it was twice a year. Then we went to once a year, which I felt fine about. You do what you feel comfortable with. You are in charge of your health. Good luck.

 

[Chuck C]

He also told me he would be fine with reduced screening at this point, from twice yearly to an annual appointment. I chose to stick with the twice yearly echo's, but this whole thing is incredibly confusing.

I think that is a good idea, to stick with twice yearly for now. Aortic stenosis is not something which is known to ever reverse on its own, just gets progressively worse. But, if it somehow has truly reversed for you, that is fantastic! More data points would be needed to accurately say that it has indeed reversed and getting echos every 6 months will bring clarity with time and a few more readings.

I know that my echo numbers bounced around some. My aortic valve area (AVA) readings went like this:

1.0 cm2
1.4 cm2 (just 2 months after my first echo, but at a different clinic)
1.1 cm2 (Just 4 months later at the same clinic, when I was being evaluated for TAVR)
1.1 cm2 - 6 months later
0.89 cm2 -6 months later and time for surgery.

After my first echo with an aortic valve area of 1.0 cm2, I was first diagnosed with aortic stenosis. That is right on the border of the severe threshold. It was somewhat good news to hear that 2 months later that my valve area had moved from 1.0 cm2 to 1.4 cm2. However, there is some measurement error that occurs and my other metrics did not agree with either of these echos. In fact, for both echos they were discordant, meaning that they did not agree with one another.

First echo: AVA right on severe threshold, but peak jet velocity and mean pressure gradient both indicating I was moderate AS, actually close to the Mild threshold.

Second echo: AVA was now safely in the moderate zone, at 1.4 cm2, but hold the phone, because both my peak jet velocity and my mean pressure gradient were now showing to be right on the severe threshold. So, that would be discordance, just as my first echo's numbers were discordant, but discordant in the opposite direction.

When I look at the readings for my next three echos after those first two, things became more clear. The next 3 echos had all three metrics to measure severity in agreement with one another and showing gradual progression in severity from echo to echo.

After graphing the numbers out, I have come to the opinion that my second echo was totally out of whack in all 3 metrics. I believe my first echo was accurate with respect to peak jet velocity and mean pressure gradient, because when graphed with echos 3, 4 and 5 they showed gradual AS progression for both metrics. But, I think the first echo was likely off a little on the AVA. The continuity equation is used in calculating the AVA. The diameter of the LVOT is measured and squared in this calculation, so even a slight measurement error of 1mm can create significant differences in the final valve area calculation. So, there is good reason that more than one metric is generaly used and good reason as to why it is important to look at trends over the course of several echo readings.

Anyway, I think you are wise to continue getting echos every 6 months. It would be truly amazing if further data shows that your condition has reversed itself. Hoping that this proves to be the case.

 

[Teapotimus]

More data points would be needed to accurately say that it has indeed reversed and getting echos every 6 months will bring clarity with time and a few more readings

Yes, I'm interested to see if the trend continues, it certainly could be erroneous measurements. On the bright side all of my echo's have mentioned that I continue to be free of LVH, which I understand is something to be on the lookout for.

My Cardiologist really threw me off with suggesting less imaging though, they ran an ECG on me right before the appointment and he came in looked at it then with a bit of exasperation mentioned that it looked perfect, then proceeded to talk about being fine reducing the imaging. For contrast my first ECG said this

I'm especially interested in my measurements due to the lifestyle changes I've implemented essentially beginning the week of my first echo in 2021. Went from sedentary to active, quit smoking, and changed my diet.

In addition I started on a combination of vitamin K2 and vitamin e tocotrienols, as well as a large amount of Hawthorne. Don't know if any of that has anything to do with anything, but there is some research out there on the cardiovascular benefits of those supplements.

 

[Teapotimus]

Just an update as I had another echo today and the trend has continued, I'm now classified as 'moderate' for stenosis and trending towards mild.

Updated my spreadsheet with the new values.

AVA has now increased by 45% compared to my first echo at OHSU and and my peak/means gradients have decreased by 36% and 31% respectively, Vmax also fell below the severe level for the first time and is now down 20% from it's highest value which was my first echo.

LVIDd and LVEDV remained stable in the normal range and my EF is staying between 60 - 65%. Overall great news!

 

[Chuck C]

That is amazing! Thank's for the update. If it was just one echo, I would think it was probably just an aberation. But gradual improvement over 3 echos is much more meaningful. Hoping that you are the first to see the kind of reversal.

What is the dose of K2 that you take? BTW, there is one anecdotal report of someone who has AS reversal while taking k2. It has never been verified to my knowledge. It would also be just correlation, which does not make causation. I did take 300mcg daily when diagnosed with AS. Things sure did not reverse for me. I doubt it was the k2 for you, but that would be pretty amazing if for some reason it worked for some people.

 

[Teapotimus]

That is amazing! Thank's for the update. If it was just one echo, I would think it was probably just an aberation. But gradual improvement over 3 echos is much more meaningful. Hoping that you are the first to see the kind of reversal.

What is the dose of K2 that you take? BTW, there is one anecdotal report of someone who has AS reversal while taking k2. It has never been verified to my knowledge. It would also be just correlation, which does not make causation. I did take 300mcg daily when diagnosed with AS. Things sure did not reverse for me. I doubt it was the k2 for you, but that would be pretty amazing if for some reason it worked for some people.

I've been taking 500mcg daily for a little over 2 years now. I take it with 125mg vitamin E tocotrienols, I recall reading a paper about the antisclerotic effects of both, and potential benefit when taken together, though I don't currently have said paper. I also take coQ10 and cod liver oil.

I've also been utilizing hawthorne tea (1oz dry plant material to 28oz water and brewed overnight) and a hawthorne extract for a couple years now too. In addition I've been trying to induce autophagy on a regular basis via intermittent fasting.

Not really sure if any of this has to do with anything, but with 5 echos spanning over 2 years I have to assume something is working. It's not just the imaging either, I just did a 6 mile hike last weekend with no issue, which would have been difficult a few years ago.

Moderate!

 

[Lisa2]

What is the dose of K2 that you take? BTW, there is one anecdotal report of someone who has AS reversal while taking k2. It has never been verified to my knowledge. It would also be just correlation, which does not make causation. I did take 300mcg daily when diagnosed with AS. Things sure did not reverse for me. I doubt it was the k2 for you, but that would be pretty amazing if for some reason it worked for some people.

Sign me up pronto if K2 can help reverse AS! Kidding aside, that’s intriguing. I’ve never heard of a backwards trend, only the inevitable, gradual worsening.

 

[pellicle]

? BTW, there is one anecdotal report of someone who has AS reversal while taking k2.

here or in the literature?

 

[Chuck C]

here or in the literature?

Neither. It was a blog online. I don't give it any credibility.

 

[pellicle]

Neither. It was a blog online. I don't give it any credibility.

Maybe you should mention it to some needy person

 

[Teapotimus]

Just adding the relevant portions of my first and last echo's, which I should have done in the first place. Will be interesting to see if this continues.

First​

Last

​

 

[Teapotimus]

Just a small update.

I managed to establish care with a different medical group here after a few attempts for a new opinion on my case (turns out the trick was to not mention the word congenital to the schedulers).

My new and hopefully permanent Cardiologist is wonderful and went over all 5 of my adult echo's, MRI, stress tests, ecg's, etc from the last few years, and had no issue with me being a congenital patient.

She remeasured a number of values, and told me all of my LV dimensions are completely normal, no evidence of LVH. The most exciting part of the appointment though was her rating my aortic stenosis as Mild/Moderate and my regurgitation as Mild/Moderate, though we will reinvestigate that with another MRI early next year. Overall my heart is healthy and shows 'no signs of stress or decompensation' as she put it.

While she doesn't have any explanation as to how I've gone from severe heading towards critical stenosis to mild/moderate over three years she seems very interested instead of dismissive of it. Depending on the MRI results next year I may decrease my imaging to annual as a result of this.

I feel great, better than I did when my gradients were ~50% higher than they are now and the impending surgery I was told I needed at first seems either far away or perhaps will never happen.

 

[ashadds]

did you verify this with a TEE ?

 

[ashadds]

something the readings have a lot of discrepancies, mine went from severe to moderate and my last 2 echos in different hospitals says moderate . I might after a few months go to cleveland or mass general to verify this, but for now I am on annual review

 

[Teapotimus]

something the readings have a lot of discrepancies,

I agree, I've dealt with discrepancies in ventricle dimensions since the beginning of my monitoring.

However, the gradients and AVA have been consistently trending down. Each echo my gradients have been lower than the previous and my AVA has increased.

 

[ashadds]

whats the latest report say ?

mine says pk 50 mean 28 , these gradients firmly put me in moderate and in another center it says about the same

 

[Teapotimus]

Updating as I had a new cardiac MRI with contrast performed a couple of days ago.

The news is better than I would have expected! A 14.29% reduction in my regurgitatant fraction, completely normal LV dimensions, and a 2mm reduction in ascending aorta dimension (compared to echo so this may not mean much). Of special note, at least to me, is this MRI found my valve leaflets to be only 'mildly' restricted. My last MRI roughly 18 months ago found one of the leaflets to be heavily restricted.

Interestingly these results also coincide with my last echo 6 months ago rating my stenosis as 'moderate' instead of severe.

I'm keen to discuss this with my Cardiologist in a couple of weeks, but as far as I can tell the remission of the disease continues.

 

[Chuck C]

That is fantastic news!

May the reversal continue!