Update from doctor but confused - British Liver Trust

British Liver Trust

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Update from doctor but confused

Jayden44 profile image
16 Replies

Hi all.

Could you advice please.

I have been for further LFT,s after scan showing 100% fatty liver and liver cysts.

My blood tests now come back at normal lever - is this possible? I have not had any alchohol since finding put my liver was not functioning right.

My doctor now states as my levels are normal my liver is no longer damaged and another blood test in 1 yr .

Surely she can't be certain all is now back to a healthy liver in just 3 months.

Again all you expert advice appreciated as I am thinking payingbl for blood tests and scans in 3 months time

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Jayden44 profile image
Jayden44
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16 Replies

Hi Jayden,

Have you been referred to a liver specialist yet?

Best wishes

Trust1

Jayden44 profile image
Jayden44 in reply to

No I have not. Doctor said that if my LFT went up again then maybe but now they are normal a liver specialist would not be necessary.

He said the cysts I have are called "simple cysts" are are fine.

I am not really feeling the love right now and feel I may have to start demanding somewhat

in reply toJayden44

If a very fatty liver and some cysts were seen on scan you are absoutely within your rights to re- request to see a liver specialist.

Jayden44 profile image
Jayden44 in reply to

Thank you for the support I will push the issue.

moonbeam4 profile image
moonbeam4

This is why a diagnosis is not made by relying on one test but by taking an overall, multi view usually liver function blood panel with ALP, ALT, GGT ect, and perhaps ultra sound and fibroscan. Hopefully someone can explain it properly to you, but basically i think your description shows that your liver is compansated and managing to carry out all its functions despite issues like cysts. My friend has many cysts in her liver and her blood numbers are good, and I have, according to the fibroscan cirhosis and my numbers are normal, indicating my liver is functioning o.k despite the abuse i put it through!. Well done on the alcohol front, hopefully staying off will keep you in the compensated position. If i were in your boots i would work on my diet and try to eliminate any fatty liver, (which i,ve been told to do myself by the Consultant) and have your bloods checked every 6 months which i think is the norm , unless other symptoms pop up such as constant itching. If the doc wont go for 6 monthly testing, perhaps say that it,s worrying you and causing depression and stress unless you are o.k with waitiing a year. Oh, and plenty of exercise, very important for fatty liver. Sorry for my ramblings, i can,t scroll back up at the moment to see if I made any sense!. Hope somthing may help 😂😃😅😂!.

Jayden44 profile image
Jayden44 in reply tomoonbeam4

You have made perfect sense. I just feel my doctor does not know enough about the real inner liver issues. I have been very stressed and have told her as my cousin started like this and progressed to having to have a transplant, sadly she rejected her transplant and sadly passed away hence my ""lack of trust"" so to speak.

moonbeam4 profile image
moonbeam4

Gosh Jaden, I can understand your concerns especially after what happened to your cousin. I would go back to your Doctors surgery , see a different partner and explain that you want to be referred for further tests/ heptologist etc. Take someone with you if you are not the sort of person who finds being firm easy. If you still have no joy and as a last resort you may need to go a more direct route and turn up at A and E next time you have a pain in your liver area 😉and take it from there, but i,m sure your a different Doctor will be more proactive on your behalf, certainly hope so. Let me know how you get on. cheers, m.b. x

Jayden44 profile image
Jayden44 in reply tomoonbeam4

Thanks. I will speak to my doctor and being firm is no issue as I am far too outspoken and dig my heals in. Again thanks x

GrandmaDylan profile image
GrandmaDylan

You are within your rights to insist on a referral to a specialist. After an iffy start with a gp at the practice I use I complained and since then the head of the practice has been very proactive. I asked for an urgent referral as I was panicking after the diagnoses of cirrhosis and varices. Unfortunately his opinion doesn't carry any weight and the specialist I was urgently referred to put me on the npn urgent list and I was told that it would be November before I was seen. on the day that I rang to ask about the waiting list I said I would pay to see him privately...I saw him that evening. He has now transferred me to his nhs list and is arranging for a ct scan, a bone scan and blood tests to check if it's autoimmune. I pay £17 per month to simply health and they will pay 75% of the consultants fee up to £200 per year. I have used it previously to get on the list for an orthopaedic surgeon as my then gp refused to refer me as she considered me too young. We are not well off, in fact I'm on ESA but I think it's money well spent. Deb

Jayden44 profile image
Jayden44

Deb thanks for you post. I will insist. I hope your tests turn out to be ok.

GrandmaDylan profile image
GrandmaDylan in reply toJayden44

I got a letter today for liver ultrasound on the 7th august. Hope you get your referral soon. Deb

Jayden44 profile image
Jayden44 in reply toGrandmaDylan

That's great hope it goes well. I will be speaking to a different doctor next week to ask for referral.

There are diseases which give you liver cysts. Depending on what you have you may or may not suffer liver trouble. You do need an ultrasound of your entire abdomen asap to try and find out which problem you have and the treatment needed. I have one such disease and have cysts on my liver. Im not going to frighten you but these diseases are not lethal and may not need a transplant. One disease of the kidneys also gives you cysts in most major organs inc liver. This is why the entire abdomen needs doing. This one is mine. With keyhole surgery these days quite a bit can be done however please do not drink alchohol until you know what the problem is. Good luck

Mark

Jayden44 profile image
Jayden44 in reply to

Hi Mark. When I had an ultrasound they confirmed my kidneys,pancreas was clear, but I will raise this with my doctor. Thank you and hope you can recover. J

carole-shaw profile image
carole-shaw in reply to

I have polycystic liver and kidney disease. I had kidney transplant 9 years ago now on list for liver. My liver is functioning normal but my abdomen is massive look like I’m having twins this is causing other issues like not eating, constant lethargy, breathing difficulties and constant pain.Quality of life really bad.

Hope you get some answers soon

Carole

Jayden44 profile image
Jayden44 in reply tocarole-shaw

Carole I am so sorry you are suffering but hope a liver is available soon and you get a better standard of life. Thank you for taking the time to reply. Sending my love J

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