What to do?

[Charl1e]

Since my initial post, a year ago, I have had no contact with my GP & have effectively been left to my own devices. Blood tests that I have had, I have paid for privately. Cutting a long story short, I recently changed surgeries, and went along to try and get another scan organised. Having reviewed my notes, the GP said she would organise more blood tests, to include the Kidneys. I phoned the surgery, to be told no further action. I was a little suspicious as the nurse only took one ampule of blood. Obtained a copy, and the results seemed somewhat limited. No GGT, AST, Platelets. Those that were tested, were indeed fine. I'm slightly confused as to what to do next. Can I insist on further testing? Can I insist they send me for a scan?

There doesn't seem to be any level of concern from either the old or new GP, so it's possible my suspicions are turning to paranoia.

Any suggestions/advice would be greatly appreciated.

[Millie09]

Hi there, well i would be inclined as to go back to the gp who took your bloods and ask them about what the actual full test was for .I had to push my doctor last November to even refer me to see a hepetologist as I knew after living with cirrhosis 9yrs and not even been given any care plan since the gastro dr at a different hospital discharge me .I thought when discharged with no follow up all is fine 🤔.. having been on this forum since only last October I can honestly say that the people on here made me realise i had no care plan in place and if I wanted an LfT I had to ask for one . So since Feb this year I have been under QE BIRMINGHAM liver unit and I could not ask for more. I have now got stage f4 and did not know. I am.now taking lactulose due to my hepatic encephalopathy. I am to have an endoscopy🤤.a dexa scan and an MRI. I was also given many things to read especially diet at my stage. So I would go with your gut and go get answers.some gps need to be told! Good luck 😊

[AyrshireK]

I would go again and ask for a review. Ask them blunt about the previous discussion about you having cirrhosis, ask for a definitive do I or don't I? If the answer is yes then you need to be referred to a hepatologist or at the very least a gastroenterologist, you need to be having regular blood tests (full sets of LFT's including Alpha Feto Protein) plus you need to have a 6 monthly ultrasound scan ......... this is the minimum monitoring for cirrhosis. Blood test results can come back near normal even in known cirrhosis (as my hubbies do and we've previously discussed). As Millie09 has said in her reply she was left 9 years with absolutely zero monitoring and now that she has pushed for referral to liver specialists finds she has late stage cirrhosis and is having 'the works' as regards scans, tests etc. It is always better to be referred too early rather than too late.

Push, we've found you do have to be a bit of a squeaky hinge and that way you get some attention. Take ownership of your condition and do be proactive .............. it is very easy to get overlooked in the very busy NHS and I often have to chase the appointments and tests which were due but found to have gone unbooked.

All the best, Katie xx

[Charl1e in reply to AyrshireK]

Hi Katie, thank you for your advice, not only to myself but I think to everyone you respond to. I recently had an ultrasound scan (bypassed the NHS & went private). Almost everything came back as normal, and my spleen measured 117mm, whereas last time it measured 148mm, so that would seem a positive.

No fat was found in the liver, however, it does "appear mildly enlarged, but normal in echo texture. No focul lesions or biliary dilation. Nothing else of note."

Whilst none of us are "experts", I feel slightly relieved, and perhaps have bit more faith in blood results now. Having said that, still a bit of work to do.

Regards,

Charlie.

[matt137]

Hey Charlie. I think a lot of people are in the same situation as you, including me. My GP said he didnt have much experience with cirrhosis at all. He didnt even tell me that i shouldnt drink alcohol and wrote down a link to a website that he had just googled!

A different GP (after i moved house) realised i knew (kind of) what i was talking about and arranged more tests. But im only down for a 12 month check up with bloods and ultrasound.

All the best

Matt

[Charl1e]

Apologies for not replying sooner, but thank you for your response's and advice.

Charlie.