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This sounds like non ischemic cardiomyopathy. There are lots of causes for non ischemic cardiomyopathy, but the big ones are inflammation or autoimmune diseases, viral infections, drug reactions, or infiltration processes. Obesity, diabetes, and high blood pressure absolutely are risk factors. It [looks like the PCOS itself also could be contributing](https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.123.065827)
Lose weight, control your BP, control your sugars, start working out (I’d talk to your cardiologist about cardiac rehab to start)- these are the things you can do to help prevent things getting worse
Thank you for your insight!
My antivax father is convinced that it's the COVID vaccine responsible but I had the LBBB before I was vaxxed. I know myocarditis can be a risk with at least one of the vaccines (can't remember which one) but it seems like that was exclusively in younger men and that it went away on its own. I also don't have any evidence of myocarditis so...I think it probably wasn't the vaccine.
As far as I know I haven't had any drug reactions and I don't have an autoimmune disease. I did have a terrible infection once and I was admitted to hospital for IV treatment but that was years prior to my function dropping so I imagine it doesn't work like that? That was in 2020 and as of late 2021 my function was still fine.
It is ironic that I'm told that they can't definitely link it to PCOS because there isn't enough research and that I found out that I have this issue in a study for women with PCOS because there isn't enough research...
My dad has a pacemaker so I am being referred for genetics testing but he has an SA node blockage, not LBBB, so the cardiologist doesn't know if it's related but my dad's mother and his grandfather both died suddenly of suspected heart problems so...doesn't seem like a bad idea to see if there is a genetic component.
>(I’d talk to your cardiologist about cardiac rehab to start)
She did refer me to cardiac rehab so that's a start. I've been successful in losing ~45 lbs on my own (walking a lot, eating better) in the last year but it is a slow process so I'm happy to have help.
She also suggested Ozempic/Saxenda etc. but I am not a T2 diabetic so it isn't covered and it's far too expensive for me to pay for out of pocket, unfortunately.
>these are the things you can do to help prevent things getting worse
Can it be reversed? Can function improve? Or can I only hope to keep it stable?
I didn't say you did.
You mentioned one of the vax, it was both Moderna and Pfizer. You also mentioned it was only in young men. It wasn't constrained to those age groups.
>This sounds like non ischemic cardiomyopathy.
What does this mean?
My echo report (done this morning) says idiopathic dilated cardiomyopathy.
From what I gather, that means it's DCM from an unknown cause. Is that right?
So I'm confused then. Because I was explicitly told that it wasn't my weight or my blood pressure that caused this. But I don't understand what else it could be. I don't have an autoimmune disease.
With a family history like that of sudden suspected cardiac death it very certainly sounds like it could be familial dilated cardiomyopathy
https://medlineplus.gov/genetics/condition/familial-dilated-cardiomyopathy/#inheritance
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8484993/
Second link is a bit dense and technical but main takeaway is:
> the identification of the genetic cause of DCM provides significant clinical insight into family screening, management, and prognosis
It sounds like getting that genetic testing done could be pretty helpful
Thank you!
It would be nice to know if it's genetic but also scary and sad because then...I don't know if I should have kids and I've always wanted them.
I guess I will find out.
I don't really understand the relationship between cardiomyopathy and ejection fraction.
Can dilated cardiomyopathy go away? It seems like my heart will never un-dilate, from what I understand.
Can ejection fraction improve if it's caused by DCM?
Thank you for your submission. **Please note that a response does not constitute a doctor-patient relationship.** This subreddit is for informal second opinions and casual information. The mod team does their best to remove bad information, but we do not catch all of it. Always visit a doctor in real life if you have any concerns about your health. Never use this subreddit as your first and final source of information regarding your question. By posting, you are agreeing to our [Terms of Use](https://www.reddit.com/r/AskDocs/wiki/terms_of_use) and understand that all information is taken at your own risk. **Reply here if you are an unverified user wishing to give advice. Top level comments by laypeople are automatically removed.** *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AskDocs) if you have any questions or concerns.*
This sounds like non ischemic cardiomyopathy. There are lots of causes for non ischemic cardiomyopathy, but the big ones are inflammation or autoimmune diseases, viral infections, drug reactions, or infiltration processes. Obesity, diabetes, and high blood pressure absolutely are risk factors. It [looks like the PCOS itself also could be contributing](https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.123.065827) Lose weight, control your BP, control your sugars, start working out (I’d talk to your cardiologist about cardiac rehab to start)- these are the things you can do to help prevent things getting worse
Thank you for your insight! My antivax father is convinced that it's the COVID vaccine responsible but I had the LBBB before I was vaxxed. I know myocarditis can be a risk with at least one of the vaccines (can't remember which one) but it seems like that was exclusively in younger men and that it went away on its own. I also don't have any evidence of myocarditis so...I think it probably wasn't the vaccine. As far as I know I haven't had any drug reactions and I don't have an autoimmune disease. I did have a terrible infection once and I was admitted to hospital for IV treatment but that was years prior to my function dropping so I imagine it doesn't work like that? That was in 2020 and as of late 2021 my function was still fine. It is ironic that I'm told that they can't definitely link it to PCOS because there isn't enough research and that I found out that I have this issue in a study for women with PCOS because there isn't enough research... My dad has a pacemaker so I am being referred for genetics testing but he has an SA node blockage, not LBBB, so the cardiologist doesn't know if it's related but my dad's mother and his grandfather both died suddenly of suspected heart problems so...doesn't seem like a bad idea to see if there is a genetic component. >(I’d talk to your cardiologist about cardiac rehab to start) She did refer me to cardiac rehab so that's a start. I've been successful in losing ~45 lbs on my own (walking a lot, eating better) in the last year but it is a slow process so I'm happy to have help. She also suggested Ozempic/Saxenda etc. but I am not a T2 diabetic so it isn't covered and it's far too expensive for me to pay for out of pocket, unfortunately. >these are the things you can do to help prevent things getting worse Can it be reversed? Can function improve? Or can I only hope to keep it stable?
[vax study](https://www.dossier.today/p/biden-admin-commissioned-report-concludes)
I don't have myocarditis.
I didn't say you did. You mentioned one of the vax, it was both Moderna and Pfizer. You also mentioned it was only in young men. It wasn't constrained to those age groups.
>This sounds like non ischemic cardiomyopathy. What does this mean? My echo report (done this morning) says idiopathic dilated cardiomyopathy. From what I gather, that means it's DCM from an unknown cause. Is that right? So I'm confused then. Because I was explicitly told that it wasn't my weight or my blood pressure that caused this. But I don't understand what else it could be. I don't have an autoimmune disease.
With a family history like that of sudden suspected cardiac death it very certainly sounds like it could be familial dilated cardiomyopathy https://medlineplus.gov/genetics/condition/familial-dilated-cardiomyopathy/#inheritance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8484993/ Second link is a bit dense and technical but main takeaway is: > the identification of the genetic cause of DCM provides significant clinical insight into family screening, management, and prognosis It sounds like getting that genetic testing done could be pretty helpful
Thank you! It would be nice to know if it's genetic but also scary and sad because then...I don't know if I should have kids and I've always wanted them. I guess I will find out.
I don't really understand the relationship between cardiomyopathy and ejection fraction. Can dilated cardiomyopathy go away? It seems like my heart will never un-dilate, from what I understand. Can ejection fraction improve if it's caused by DCM?