Help? What help?

Since a diagnosis of cirrhosis a couple of months ago, I've had an ultrasound scan, a CT scan and a gastroscopy. I've had no advice re current medications (even though a couple of my long term meds indicate possible incompatibility with my liver) and no dietary advice. Thanks be for the Liver Trust, without whom I could be doing untold damage to my already damaged liver. Do many other BLT members have similar problems?

My GP - when I get to see her, which isn't easy - demonstrably knows nothing about liver health. My overall experience is that the medical profession in general doesn't take a holistic approach to treatments/therapies.

6 Replies

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  • Sorry that this isn't really a helpful reply, but the answer to your questions is yes, that is about par for the course.

    Ask your GP (can be done by letter) to refer you to an acute dietician at the local hospital.

    I collect my medication from a well known high st chemist. Their pharmacist gives me the annual check on my medications and how they seem to be doing, plus recommending any changes, that my GP doesn't do, despite it being on my records that I should have an annual review.

  • Thanks for that. I too have an annual review with my pharmacist - I'll request an interim one soonest.

    As for diet, my GP said "just eat healthily" - no mention of salt and red meat reduction for example. So I will write to her for a dietician referral.

    Thanks again RHGB.

  • Hello I couldn't agree more, I have an autoimmune disease of the liver called pbc which in my case has led to cirrhosis and may lead ultimately to a transplant I see the consultant now every 6 months, initially it was annually, I am given no advice or support with this life altering life threatening disease, compared with the support a relative with diabetes gets or patients with cancer it's appalling and unfair.I have found the only support through patients groups like this they are a lifeline.I hope that things improve for liver patients but am not holding my breath as don't expect it any time soon.

  • Yes, there's so much that CAN be done, as we know from this forum, but few out there in the NHS seems to know the importance of diet, impact of medication, exercise and the like. I'm thinking of looking for a holistic practitioner - to treat me in addition to, not instead of, the GP and the gastro team.

    Thanks for replying, Jane. Let's battle on!

    x

  • I agree too, the GPs seem to know so much about heart / diabetics things for instance and so many other things but liver health seems to be at he bottom of the pile. I read a BBC article on the lack of GP knowledge on it and the lack of awareness for liver health compared to heart health.

    I know GPs are not specialists but they should have some basic knowledge on the subject.

    The article also stated how they use out dated blood tests to diagnose a liver problem when we all know liver function tests can be normal even when there is a severe problem.

    I've finally been referred to a gastro after almost a year of going back and forth to the gp. I've still got to wait a few months and in the meantime no advice even though I know I should not be drinking alcohol and eating very healthy.

    I assume the thinking is if you had a liver problem by natural causes (autoimmune, pbc etc) the blood tests would always be off and then you'd be referred. Where as one caused by lifestyle e.g. Drinking will only be off if the insult is constant. So it's up to patients to follow lifestyle guidance and if they don't diagnosis can be more tricky. This may not be the case but it feels like it sometimes. I'm sure most people would agree that's not fair and also not what is done in other lifestyle factors (again heart and diabetics and also smoking).

    Our amazing livers are so good at tricking us in to thinking everything is alright. It's because they are so good that problems don't arise until it's too late. Again other condition come up much quicker and can be at least partially corrected or managed.

    Once more and more people end up using the NHS because of liver problems (which is bound to happen) then maybe there will be a tactical change in front line preventative care just like smoking before. More places need fibroscan to catch things before they are too late. I'm sure most people would change their lifestyle if they actually had a warning about what would happen if they didn't.

    Sorry going off topic a little as some of you have non lifestyle conditions.

    Forums like this seem to be a much better place to get general information. When you eventually see your specialist or gp you can run it by them.

    :-)

  • Yes, you're absolutely right. When I told my GP that I'd gleaned a lot of info from this site she replied "You probably know more about it than me then". And actually I do! I shall carry on getting info and help from this wonderful site, will have a medication review with my pharmacist and seek dietary advice. My GP did fast track me for gastroenterology, for which I'm grateful, but then she took her eye off the ball - actually asked me if I'd had an endoscopy! She's got my notes for goodness sake! But onwards and upwards!

    Many thanks for your reply - hope all goes well for you. x

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