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Anyone else have heart issues?

Before I begin - my insurance is denying me for a cardiologist. I’m working on it.

This is kind of a follow up to my previous post. The fever thing (not a fever, but feels like a fever) thing hasn’t been resolved but that did stop. The dizziness we think it’s because my heart rates drops during exercise/a lot of movement. Has anyone else experienced this?

  1. Hi fenrislfr! While you may get feedback from the community on
    personal experience, I wanted to let you know that we encourage anyone experiencing new symptoms/side effects to speak with their doctor, just to be on the safe side and to rule out any serious side effects or other possible underlying causes. I know you are working on getting approval for your cardiologists, but how about your GP? Can they help to provide some insight? We hope you find some answers and relief soon. Please do keep us posted on how you’re doing! - Geri (Lupus.net)

    1. hello,


      I have seen my GP, my rheumatologist, and even my hormone specialist. All of them have ruled out the meds I am taking (I even stopped them as an experiment, as this issue has been going on for months). Anytime they try to do anything heart related, or try to refer me to a cardiologist, my insurance denies me for “lack of evidence”.

    2. Hi @fenrisulfr,

      That is super frustrating. Has your insurance mentioned what type of "evidence" is needed? Are you able to see another GP for a second opinion?

      Best,
      Geri (lupus.net)

  2. They keep on saying there is a lack of evidence that this is truly a heart issue and they see no reason to do these tests or transfer me to a cardiologist. I had to fight for a 24/hr heart monitor (which of course didn’t show anything). This is the second GP I have seen since these attacks started - the first dismissed everything I said. What’s funny is due to the dizziness my GP thought she’d try a neurologist which worked up until he wanted to do scans and they said they wouldn’t approve that either, but “if the cardiologist doesn’t find anything, we will approve these scans”….but you won’t approve the cardiologist.

    1. I am so sorry to hear that. It is beyond frustrating when you feel one thing and the tests shows something else. Then on top of that you are still getting issues with approvals. I hope you will be able to find a solution or I hope other team member may be able to offer some insight.
      Best,
      Geri (lupus.net, team member)

  3. Happy Holidays! When my lupus is super active, my heart is its organ of choice. I tend to have episodes of pericarditis and pericardial effusion. Recently I’ve been having issues with PACs and high heart rate in conjunction with periods of dizziness and body temp irregularities. We are looking into Ehlers Danlos as a comorbidity.


    I encourage you to continue to push for a referral, even if it means seeing a new PCP/GP. Don’t stop advocating for yourself. Someone will listen. Best of luck!

    1. Talk to the Insurance Company first. I have found that some operators have compassion and will advise you on the proper verbiage to give the person who does the submission of the referral. I have even asked for the proper codes for my person to reference. This has helped me at times. If you are on an hmo also contact their internal office and speak with the person bcuz then it makes you a person not just a case number. I hope u can get the help you rightfully deserve.
      To answer ya question yes heart racing and it is too big. We joke and say see I told ya I was the grinch! My heart grew two sizes too big! But it is serious so please be ya strongest advocate. Blessings

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