Awaiting phone call from GP

[0range5520]

Hi friends

I get so much sound advice from this group and your help is invaluable. As I have already posted I was diagnosed with Cirhossis following a routine blood test and a fibroscan (17kpa)as the results of the blood test showed many abnormalities. I am on 6 monthly reviews with the consultant, blood tests and ultrasound scan. The ultra sound scans appear to show no portal hypertension/variaces which is good. I have been on the waiting list for an Endoscopy for 9 months, when I spoke to the consultant in September he thought I’d had it done, obviously he hasn’t got results, but was surprised it hadn’t been done.but all I get is a text asking if I still want it. I’ve asked my Gp if I can be referred to a dietitian as the cirhossis has been put down to NAFLD, but he has refused because I have a normal BMI. Just had more bloods as I have several symptoms. I am aware that they are abnormal LFT, GGT and Serum total protein level. I do not have enough knowledge do know what the results mean. The results are similar each time. The Dr is ringing me on Thursday about the results but I’m not sure what to ask as I still feel that I am in limbo. I ask each time if I definitely have Cirrhosis. The answer is, yes you have, the blood test results together with Fibroscan make the diagnosis. I just want to know what I should be doing to help myself, by the way I have never drank alcohol. I still can’t believe it’s totally out of the blue. What can I ask the Dr when he rings on Thursday?

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Orange5520,

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

In addition to the suggestions from members of the forum, here is a link to some information on our website about preparing for appointments, including questions to ask your doctor, which you may find helpful.

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

[Aotea2012]

I really would take up the offer of support from the nurse led helpline. They are fantastic and they’ll give you a lot of advice on what to ask. The text about the endoscopy has probably been prompted by the consultant chasing up the referral, so do take that up. It will assess whether you have varices. Ultrasound can’t. It sounds like everything else has been done…with a confirmed diagnosis. I would press hard for dietetic support if it’s NAFLD. Diet is crucial in ensuring the condition remains stable. If you get nowhere with your GP then contact your consultant’s secretary to see if they’ll make the referral. I’m surprised the consultant hasn’t done this. You do have to stand firm and insist sometimes…I’ve had fantastic care from the NHS…but I have had to be a bit stroppy sometimes. Things sometimes go awry for me on whether the consultant or GP requests something. My six monthly bloods are always a bit of a battle ground…in the end one of them does it!

[0range5520 in reply to Aotea2012]

Thank you for your reply. It has really helped me feel like I have some plans for next steps. Until this diagnosis I’d not been through any hospital process or system and I didn’t realise just how much the patient had to assist with moving things along. I am not the most insistent of people but I think this may be the time to try and be a bit more persistent

I only found out I had Cirrhosis because I wanted to go on HRT and had a blood test. The test came back abnormal and then I had a scan. Sometimes I feel I wish hadn’t asked all those months ago. Can’t have HRT, but have a diagnosis that’s out of the blue. (I apologise, just having a down moment). In a way it’s probably a good thing I know, but I don’t know what I should be doing now to help things.

I’ve been on the section with questions to ask your GP/specialist and made some notes on what I will say when the GP calls. I will contact the Endoscopy department tomorrow and chase up the procedure.

Again, many thanks because the advice on here is invaluable.

[Yellowsydney]

I think the text is normal if you have been on any waiting list for a while, I was referred to pain management clinic and had 2 texts whilst waiting asking if I still needed the appointment, think it's a way of cutting waiting list, it was an 11 months wait. You could always phone the endoscopy unit and as how long the wait is.Hilary x

[Sharonmcfarlane]

Hi , yes it’s so very frustrating NAFLD when you haven’t even drunk , you are similar to my mum but she has portal hypertension and varcies which have been banded . Mum has been told remove salt from your diet and she is on the build up drinks for the loss of muscle waste … and always important to have protein snacks , small and often to feed the liver . Exercise as much as you can also . Good luck to you and yeah this group is amazing for advice and support as my mum on spirolctone and carvedilol just now also . Take care of yourself

[AnxiousPete]

Sorry to hear about the delays in your diagnostic tests and yes sometimes with the NHS being stretched to the limit the patient does have to be assertive. Fibroscan and blood tests alone are not, to my knowledge, definitive diagnostics for cirrhosis.. Further imaging or biopsy are usually required. Have you been referred to a consultant gastroenterologist / hepatologist as if not you should insist. You should also push for gastroscopy to check for varices. It is also usual to be referred for a Dexa bone scan. If your doagnosis is cirrhosis then please check the NICE guidelines for the monitoring of your condition as you shoukd have 6 monthly US scans, blood tests and annual gastroscopy. Good luck with getting all the information and treatment you need. BW Pete

[LolaBow]

Hi, It is a shock when you hear this, I like you went for a blood test a year ago for something else and my bloods came back with high LFT. I was referred to the hospital within 2 mths, My fibroscan was (17.5pa) consultant says its fibrosis on the edge of cirrhosis NAFLD.. ive had 2 biopsies , last one was a couple of mths ago, not much has changed biopsy wise but the scarring as not got worse..He told me to eat healthy, so I looked up on here what was best to eat..I've lost 2 stones and a mth ago I had another fibroscan and it's gone down to (11.5pa) . I hope you get the answers to your questions and good luck on this journey, Stay strong xx

[Bluegirl52]

Look up the Fatty liver Foundation on Healthinlocked website. It is for people with fatty liver disease. Tons of info there and very helpful people. They have a great diet plan also.

[0range5520 in reply to Bluegirl52]

Thank you. I’m about to do that. Really really good advice from you. I am so pleased I posted, I’ve received some brilliant information.