Feeling more positive

Firstly thanks to all on this forum who post and support, it is very useful and informative. I am still a bit in the dark about the stage/level of my cirrhosis, I saw my Consultant yesterday, my bloods were much improved CGT has halved but still needs to come down. Ultrasound showed my liver was smaller on right hand side. He wants me to have a Fibrocan, which is to be arranged. To take a stool sample to GP for checking pancreas. (I don't know why, but I accept any test I am offered). So I feel I am getting good care, my only worry is, things seem a bit vague, my GP never seems to get my results, at times he has been sent someone else's results. My ultrasound, from March was not reviewed until July. I still do not have the results of an endoscopy in early September when a biopsy was taken for eosinophilic oesophagitis, not the most important thing, but an example of results not being passed on. My GP has not got the blood tests from last week, I do not want to be a pest, but I feel I need to keep tabs on what information is going where. Any advice on how to ensure this, without upsetting anyone. Thank you

8 Replies

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  • You are not being a pest.These things do happen unfortunately but be very persistent until you are satisfied with your results. Wishing you all the best . xx

  • If you have had a number of tests and not a lot of information, you could ask to speak with your consultants secretary and explain what you have just said and just say you are really anxious and want to know how things are and need guidance on what you need to do to help yourself.

    It might work. You could even ask for a copy of your test results, you may have to pay but it might be worth it.

    Gx

  • try asking consultants gp etc for copies of the letters and results.... this might help a bit.... I don't think that they can refuse with letters but results... once they have told you them you can ask for a copy.

    ring surgery and ask if results in yet.... thats fair enough and if you don't get any joy and you really don't want to bother doc you could perhaps talk to someone else at practice.... good luck.... its very frustrating isn't it. cazer

  • I always ask for a telephone appointment to discuss my results with the doctor and they are happy to do this ( and I have been at 2 separate surgeries due to moving). For more complicated health issues, I think the doctors are happy for people to take an active interest in their results and progress, so will not view you as a a pest. Be persistent, it pays off and good luck :)

  • Seems though this happens a lot. It's extremely rare that they will give me results automatically. In fact even with telling them I want copies of all results, they still need to be reminded. Sadly many docs good at ordering tests but it seems follow up ... maybe a big problem in many offices. Sorry but you will have to be a pest, it is your right if someone is writing about you to get a copy.

  • Thank you for yr replies, some how the dog has put me in italics! I shall ask at the Docs and send an email to the nurse at the hospital asking for the blood test results. No doubt the Consultant will write to the GP and I will check for that.

  • You are not being a pest!! You have a right to see or ask for your own test . Take care xx

  • I have been a pest! I am now have the full blood tests and ultra sound report generally good news, bloods are much better with nearly everything in right range GGT has more than halved since July, now at 75, ultrasound ok apart from the fact the left lobe of my liver has shrunk since March, so Fibroscan appt on way and I apparently have Acute Liver Injury AKI stage 1 warning. I shall have to follow that up, but feeling good.

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