Heart Disease and POTS/CFS

[Gingergrrl]

I just tried it and it did help. My pulse stayed under 100 until I got out and dried myself off (sitting down) and it went up to 120. An improvement. I hope it continues.

Helene, that is great news, and I am so glad the shower chair helped. The combination of standing in the shower with the hot water is very bad if you have POTS.

I'm off to Johns Hopkins in a few short weeks. I'll be seen in their HFpEF clinic where a heart biopsy is routinely ordered. I'm hoping to get my answer from this trip, though I haven't found any answer that could be considered good news.

I am so glad you are going to Hopkins and hope you will keep us posted.

Meanwhile ... the digging that I've done in the last couple years has me thinking that anybody with significantly elevated NT-pro-BNP may very well have some sort of cardiomyopathy

My (prior) BNP tests were always normal. Is "NT-pro-BNP" the same thing or a totally different test?

 

[TenuousGrip]

My (prior) BNP tests were always normal. Is "NT-pro-BNP" the same thing or a totally different test?

It's an excellent question. I don't really know the answer. I do know that it's a matter of some controversy. If you're interested, here's an excellent article. You may want to just peruse the 'Summary and Conclusion' section:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1785227/

And I'm not surprised that your BNP levels have been normal ... based on everything that you've shared about your situation.

 

[Sushi]

We get a lot of heart valve problems according to what I have seen over the years,

There could be an association because of EDS as a co-morbidity. I think that is true in my case.

I'm off to Johns Hopkins in a few short weeks. I'll be seen in their HFpEF clinic where a heart biopsy is routinely ordered. I'm hoping to get my answer from this trip, though I haven't found any answer that could be considered good news.

Please keep us updated--some of us would like to "be with you" during this venture.

Re: BNP, from another article:

Conclusion: This study confirms an association between reduced cardiac volumes and BNP in CFS. Lack of relationship between length of disease suggests that findings are not secondary to deconditioning. Further studies are needed to explore the utility of BNP to act as a stratification paradigm in CFS that directs targeted treatments.

 

[alex3619]

There could be an association because of EDS as a co-morbidity. I think that is true in my case.

EDS is very common in the ME community, but what we do not know is exactly how these two combine. For example, how much of ME is due to EDS, and how many symptoms are due to EDS alone? The two blur together. EDS is likely to affect the entire vascular system, amongst other things.

 

[Gingergrrl]

It's an excellent question. I don't really know the answer. I do know that it's a matter of some controversy. If you're interested, here's an excellent article. You may want to just peruse the 'Summary and Conclusion' section:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1785227/

Thank you @TenuousGrip and I read though the summary part, and also Googled it on Lab tests online, etc, and am still confused if they are two totally separate things vs. two different markers that are measuring the exact same thing!

And I'm not surprised that your BNP levels have been normal ... based on everything that you've shared about your situation.

Is that because my cardiac issues were due to Autoimmune POTS/Dysautonomia vs. a true cardiac problem?

Please keep us updated--some of us would like to "be with you" during this venture.

Definitely 100% and I hope you will keep us posted as you go to Hopkins for the cardiac biopsy and let us know what you learn. You are very brave to do this!

 

[TenuousGrip]

Is that because my cardiac issues were due to Autoimmune POTS/Dysautonomia vs. a true cardiac problem?

Yep.

My medical knowledge is the proverbial 'inch wide and mile deep' but it definitely sounds like autoimmune and autonomic is where your answer lives.

Definitely 100% and I hope you will keep us posted as you go to Hopkins for the cardiac biopsy and let us know what you learn. You are very brave to do this!

Thanks much, GG.

I think I'm really just doing what nearly all of us have to do -- whatever it takes to try to find answers ... hopefully ... even a path forward.

I'll definitely post an update when we have the biopsy results.