Unexplained heart block? Insist on being checked for cardiac sarcoidosis

Hi all...

After seven years of symptoms (ignored by my doctor), I suffered complete heart block in 2014 and was fitted with a pacemaker (in Greece, no less!)  I've been 100% dependent on it ever since.  Sadly, no one on my medical team wondered why a fairly fit middle-aged woman had suddenly developed a heart block and so did absolutely no further testing.  Fast forward to 2017 when I was (after a long comedy of errors) diagnosed with cardiac sarcoidosis, which appears to be the cause of my heart block.

I've since learned that the American College of Cardiology recommends that "all patients under the age of 60 years with newly recognized heart block should be screened for cardiac sarcoidosis as this condition is potentially reversible."  Because my medical team did not provide this screening, it's now too late for me to try to reverse my heart block, which would have been attempted with steroid treatment.  But I'm hoping to spread the word so that other pacemaker patients can be screened in time.

Although the majority of sarcoidosis patients have lung involvement, a few (like me) have it limited to the heart or another organ, so don't let anyone tell you "you don't have lung or lymph node inflammation so you can't have it in your heart."  The only tests that are adequate for cardiac sarc are cardiac MRI and cardiac PET scan, nothing else will do.

The most common first symptom of cardiac sarcoidosis is sudden death, so this is very important stuff.  Add to that the potential for reversing heart block and it becomes imperative to have this screening.

5 Comments

Cardiac Sarcoidosis

by ROBO Pop - 2018-09-04 19:59:49

 

If you are interested in this topic, and concerned you may have this medical issue, may I suggest you read the National Institute of Health web site on the topic. It contains a lot of valuable information that dispels a lot of inaccurate information on the disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860791/

sarc article

by SamanthaS - 2019-12-03 11:31:21

Looks like this article is from 2006 and I was told this week that there are good treatments available now.  I'm scheduled for a PET next week as my symptoms have returned post-placement with the pacemaker.  Pretty scary stuff!

Glad you're getting screened for sarcoidosis!

by laughingarcher - 2019-12-03 20:26:37

Hi SamanthaS...

Yes, any study or article re: sarcoidosis that is more than five years old is pretty useless because the science and understanding of this rare disease changes so rapidly. 

I'm glad you're being screened! I didn't have that good fortune when my heart block manifested out of the blue back in 2014 but, as I say, things have changed, mostly for the better!  I see more and more cardiac sarc patients being diagnosed within months instead of the 10 years it took for me.

 Are you having a dedicated cardiac PET or a full-body PET?

I just had my pacemaker upgraded to an ICD last week.  So far, so good!

sarcoidosis

by SamanthaS - 2020-01-10 11:00:16

Started prednisone mid-December and was upgraded to bivent/defib a week later.  Thank goodness for ice packs - made such a difference!  Ups and down with steroids and now taking beta blocker due to the pcvs.  25mg/day of the steroid; down from 50 every other day, which destroyed my sleep.  First night of getting 4 hours at one pop!  Feeling better after a 3 weeks out from implant and getting adjusted to meds.  According to interrogation, heart function has improved enough to say I'm no longer 100% in heart block!

Did you get a diagnosis of sarc?

by laughingarcher - 2020-01-10 20:10:41

Sounds good! I'm glad you're doing better.  :-)

Did you end up diagnosed with sarcidosis? 

I'm at week 7 post-ICD implant. Also doing well, although the ICD is a lot heavier than my old pacemaker!

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