at my wits end

In April I had some questionable blood results, high ama's and high ferritin at my regular doctor. She ordered add't bloodwork which came back with more questionable results. She referred me to a gastrointerologist who repeated some of the blood work, ordered additional blood work and scheduled an ultrasound. I was told the results of the ultrasound were that I had a "fatty liver and some scarring". Ama's are still high. He then ordered a CT to give a more detailed idea of the scarring. I was called with the results and was told i had a "fatty liver and some scarring". AMA's and ferritin are still high and the subject of PBC was brought up. In order to verify this I was scheduled for a liver biopsy which they did transjugular due to some concern with bleeding. I just got the results today. They were that I had a "fatty liver and some scarring". Am I crazy or does this not sound like duplicated answers for three different procedures which were supposed to further my understanding of what is going on. All of these test results were delivered by phone by his nurse with no additonal explanation or notes indicating any further explanation. Just "call back in a couple of months if anything changes". Please if anyone knows of a reputable doctor in western North Carolina please let me know. At 55 relatively healthy years this is a first for me!

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  • I'm so sorry your dealing with this. I saw my Doctor on Sept. 8th...She did a full panel of blood work and urine test. 3 hours later I was sent to the ER WITH my records and blood test results in hand mind you. The ER ran ALL the exact same tests including the urine test (a sterile straight cath urine test...horrible.) Results we're the same as they we're 3 hours earlier. My bill quadrupled in the ER for the same tests. But, ER did do a CT scan. 3 days later AGAIN... blood work AND another CT. Exact same results. They couldn't find anything but elavated white cell count all 3 times. I initially presented with acute stomach upset, pain, and low grade fever. I was sent home and told to consult with my general practitioner who would refer me to a GI. Which I did.... Who also ran even more blood work...scheduled and did an endoscopy... Diagnosed acute gastritis, and because of finding the elavated Alkaline P., diagnosed me with PBC. My GP and 2 ER visits did not inform me of elavated ALP. Not even after all that blood work. Took the GI doc to finally inform me. Crazy.

  • Good morning - I don't know of a specific doctor but have you looked into Duke or UNC Chapel Hill? I'm sure both have gastroenterology departments who are well versed in PBC, fatty liver and other similar conditions. Very often they have off-site locations that may be closer to you. Unfortunately, not all providers are knowledgeable about PBC as it is still pretty rare. If at all possible, I would take advantage of the world class medical facilities in your state...even if they are a road trip away! Once properly diagnosed, they can often refer you to a local provider for follow up treatment. If PBC, it's best to get diagnosed and started on URSO to try to slow the progression.

    Best of luck,

    Maureen

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