PBC/AIH with complications


Diagnosed with overlap/crossover liver disease, also discovered abnormal anti-bodies so am seeing haematology next week, have swollen lymph nodes on my liver. Have had, CT of liver with contrast, MRI with contrast and liver biopsy and now am being sent for CT of thorax with contrast. I just wondered if anyone else has had similar experience and what the outcome was? I feel a bit scanned out!!


2 Replies

  • Hi, please be careful with CTs with contrast, particularly for those of us with autoimmune disease. Just be certain it is absolutely necessary and/or that there isn't an alternative. CTs have fairly high levels of radiation and are sometimes ordered indiscriminately, or without a physician realizing how many others have been ordered in the past. In addition, the contrast material is often gadolinium, which is a heavy metal with known toxicity, risks, and side effects. It is mostly excreted, but there are a significant number of people who draw correlations to serious health issues including autoimmune flares or new symptoms following gadolinium exposure. We know that small amounts remain in the body after exposure. Much is still anecdotal at this point, but the FDA has warned physicians of the risks, particularly if there is any diagnosed or undiagnosed kidney disease. I have refused the contrast portion of an MRI at least twice and the physician reported they were still able to see what they needed to see. I don't want to scare anyone - there may be situations where it is the lesser of evils - but if you have a choice, or the possible information gained isn't apt to alter treatment decisions, don't be afraid to say no or at least ask lots of questions until you're satisfied with the answers and comfortable with the decisions. Too often we are guinea pigs for controversial or unstudied consequences of "routine" procedures. For me, when a doctor suggests a CT scan I ask if an ultrasound or MRI withOUT contrast might be a reasonable thing to try first in order to minimize potentially harmful exposures. Most often, the doctor's been willing to go the safer route first and see if enough information is obtained. Best of luck to you, I hope you'll keep us posted.

  • Dianekjs has given a really informative and enlightening explanation of scans with contrast, this is just a comment on autoimmune liver disease (I have autoimmune hepatitis). The biopsy, together with blood tests, gives what I was told is a definitive diagnosis (for liver diseases). I had anti-smooth muscle antibodies, high igG, not quite sure what else but the biopsy, which was sent to King's in London, confirmed the AIH diagnosis. My symptoms continued to multiply so I was sent for an abdominal CT scan, where they found scattered lympth nodes. The gastro said they were of "doubtful significance". Further referrals led to a diagnosis of lupus (SLE), and the lympth nodes were attributed to this condition by the rheumatologist. I have no idea if they were right or if they were groping in the dark, but my conditions are currently controlled by mercaptopurine and hydroxychloroquine.

    Good luck!

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