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Fwd: Diagnostic advice for a patient

  • 1.  Fwd: Diagnostic advice for a patient

    Posted 02-05-2021 18:00
    Re-submitting this question with my updated email.

    Megan Golden, CEO

    Sent via mgolden@mission-cure.org" target="_blank">Superhuman

    ---------- Forwarded message ----------
    From: Megan Golden <mgolden@mission-cure.org>
    Subject: Diagnostic advice for a patient
    To: IMPROVEDIAGNOSIS-discussionboard@connectedcommunity.org

    I lead a nonprofit that aims to improve outcomes for people suffering from recurrent acute and chronic pancreatitis, an often mis-diagnosed disease. The more we learn about genetic and other causes, the more important it is for physicians to look beyond the fact that the pancreas is inflamed to understand why. 

    Right now, I am trying to help a patient who started having symptoms just after the birth of a child in October 2019. I am not a physician so please excuse any terminology errors. She has had loose stools, sometimes with whole pieces of food in them, and fluctuating TSH thyroid levels. She lost 70 pounds. She was told she had Exocrine Pancreas Insufficiency caused by "stress" and given pancreatic enzymes, but she continued to have symptoms. Other tests are normal: "So far they have done Mri, blood work, endoscopy, and colonoscopy and have nothing to be the cause of my epi. I have no damage to my pancreas and everything looked great in my last endoscopy." 

    She recently went to a new doctor who said he doubted the EPI diagnosis since the fecal elastase test was done on unformed stool (which sounds right to me). She says, "And now my Tsh levels are dropping again so the endocrinologists feels that whatever is causing the Epi or the epi is causing my thyroid to go all crazy resulting in thyroiditis." She is desperate to figure out what is causing her symptoms. ("I am reaching out to you in pure desperation.")  

    Does anyone know a doctor who is a good diagnostic problem solver who would be willing to see her virtually? (She is in Wisconsin.) Or does anyone have any ideas? Would diagnostic software help? 

    Thank you for any advice you can provide.
    Megan Golden

    Megan Golden, CEO