Consultant appt -EPI

Posted , 5 users are following.

Hi everyone,

I had my appt with the consultant this week. he was nice but didn't seem clued up.

First of all he didn't know the abbreviation for Exocrine pancreas insufficiency and wen I mentioned EPI he asked wat it was which threw me a little.

I haven't been diagnosed with chronic pancreatitis or EPI but I've had 2 Elastase-1 stool tests done at the GP and a Elastase-1 blood test by the gastroentoligist 2yrs ago and all indicated moderate/severe EPI. I've not had symptoms of pancreatitis but did the test as I've had a lot of stomach problems but I also have IBS.

First of all he said they don't do a blood test for Elastase-1 and it was a stool test but I get my results online and it was definitely a blood test so very confusing.

He also said the Elastase-1 isn't always accurate and could be due to my IBS. I asked if it's common for the Elastase-1 to be inaccurate and he said yes it happens all the time. Dont understand why I went for the test in the first place if that's the case.

He don't think I have chronic pancreatitis and thinks my symptoms could be due to IBS.

Hes giving me an MRI anyway to check my pancreas as well as blood tests and a repeat of the Elastase-1 and given me Creon 10000ng to take with main meals only to see if my symptoms improve.

He told me I don't need to take any vitamins and wen asked if I could drink alcohol he said yes.

I won't be seeing him again for another 5mnths to get my results as it will take awhile to see any improvements with Creon.

Tbh he seemed clueless about it. I just hope he's sent me for the rights tests?

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13 Replies

  • Posted

    go see another doctor and avoid alcohol and tobacco at all costs until diagnosed properly just to be safe. but I do agree with a pancreatic enzyme of sorts until you know. try 5-6 small meals a day and that may help with discomfort.

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  • Posted

    I agree with eagle, except to be specific you need to see a gastroenterologist who specialises in the pancreas. They are different from standard gastroenterologists and if you're concerned about your pancreas that's who you need to see.

    To say you won't be seen for 5 months is a red flag to me, he really doesn't expect your tests to be abnormal methinks. Just the same he's ordered an MRI which is great, check that it focuses on the pancreas area and have the tests delivered to your GP who can send them on to your new specialist who will probably order new tests.

    Eat small low fat meals often, 6 or so a day isn't unusual for us as our digestive system can't cope with much. Very important that you avoid alcohol all the time and don't smoke, if you do have pancreatitis they can/will cause a flare that be dangerous even life threatening and you might/will cause progression of the disease. Until you know what's going on ensure you assume you have pancreatitis and follow the rules.

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    • Posted

      thanks for the reply. i get my results online so even though my appt isn't for another 5 months I'm hoping ill know begore that. im quite sure he thinks i dont have EPI. i have appt 5mnths because he was booked and that was the earliest appt.

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  • Posted

    I meant to say I agree with Coatesy, sorry.

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  • Posted

    i dont think we gave pancreas specialists in the UK i think it falls under gastroentologist. MRI is 4 weeks.

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    • Posted

      Eagle you do have pancreas specialists in UK. In fact mine (I'm in Australia) studied for 8 years at the UK centre before he returned here. He was already a gastroenterologist of course. I had to wait a couple of months for his arrival back here I recall. I used to know the name of the place but have forgotten. It's one of the teaching hospitals, in or near Cambridge if memory serves at all. I'm sure you could call one of the teaching hospitals and ask where they specialise in the pancreas.

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  • Posted

    I think this is a tricky one cos really the pancreas comes under an endocrinologist as it is a gland controlled by the endocrine system?🤔

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  • Posted

    In my experience, in order to check for EPI they had to do a fecal test. I don't know what blood tests they performed on you to … the fecal test is used to see how you're able to digest fats. I think you should be seeing a pancreas specialist or a GI who specializes in the pancreas because not a lot of doctors are educated in what the pancreas does. Even my GI thought my symptoms were IBS related after my Pancreas Divisium was found through the MRCP. The pancreas specialist was the one who diagnosed me with my CP. You will need to be your own advocate, I had to be. All my tests were coming back normal until the CT Enterography, which revealed atrophy of my pancreas. My primary said she saw no reason for my abdominal pain but I told her I researched atrophy of pancreas and found it was associated with CP. She didn't know because it was out of her expertise. I was referred to a GI who performed the MRCP and found the PD and then referred to a pancreas specialist who found my CP. This all took over a year. The pancreas is the hardest organ to diagnose due to its location, you're going to have to be patient but advocate yourself! Demand test after test! I had blood work, endoscopy, ultrasound all come back normal but I was already chronic. If you're already chronic then it won't show in your blood. I would skip the MRI and ask for a MRCP, the MRCP is a better test and shows a working pancreas. No offense but I don't think the doctor you saw has a clue. Not even my GI doctor said wait five months, she requested an endoscopy and follow-up the next month (before my MRCP). I would look for a new doctor.

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    • Posted

      ive ready waited 2.5yrs and im now on creon to see if any improvement. my gp wont refer me to another Dr so ill have to wait to see my consultant who thinks my results were wrong. thats disappointing because if my Mri comes bk normal it don't mean its good news yet i was told me if there's any damage to my pancreas it will show up.

      not sure wat to do now but if i do have epi at least its not getting worse and im repeating the Elastase-1 test.

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    • Posted

      Even with a diagnosis nothing really changes. If you have damage to your pancreas you will need to follow a low fat/carb lifestyle and take Creon the rest of your life. Its getting the diagnosis that's frustrating. A GP doesn't have the expertise and should be referring you to someone who does. I'm sorry you're having to deal with this. I hope you find answers soon.

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    • Posted

      i think most people like yourself have gone through the same as like you said its not easy to get a diagnose. like you said as long as i eat a low fat diet and take creon i could wait another 5mnths but it's nice to have a diagnosis.

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