cirrhosis

[Liver135]

I have fatty liver cirrhosis .i was diagnosed 3 years ago .i have haemochromatosis been having venesection.

i been suffering with severe depression and anxiety.Panic attacks while trying to get to sleep and during asleep.

im really suffering from lack off salt and sugar.

im on ESA benefits and pip.

food people are saying difference things on what to eat .

the haemochromatosis diet conflict with the liver disease. Food options are getting less and less and expensive my Dietician says eat bananas every one else says no ? I may be diagnosed diabetes so that will limite it more. Iv been having problems with my eyes too .

i have very little food now .mostly salads. Pairs, apples,0ranges , grapes.,nuts , mixed vegetables frozen. The food is not lasting

I have osteoarthritis in both hips cramps in left leg when I walk any distance . Sick in the morning and blood in the phlegm first thing in the morning. Can not see the liver consultant until January .

Does anyone now how to go forward please .

im very alone?

[Sunnyskies33]

Hi. I'm sorry you are alone with this. It is hard to wait. Is the hemochromatosis a new diagnosis since you last saw your liver specialist? Once hemochromatosis (I have it too) is under control through venesection my doctor doesn't seem to worry so much about dietary changes for hemochromatosis other than things like not taking Vitamin C supplements, not eating iron fortified foods or supplements and not eating raw seafood. Your GP should be able to advise on this and give you some support. I do eat a diet that is good for fatty liver. You might want to call the nurse hotline at British Liver Trust if you are in the UK. There is a group here for hemochromatosis too. You could post any questions there. You aren't alone here but you deserve in person help. Let your GP know about the anxiety/depression...you should be able to get some help with that. Wishing you the best.

[BritishLiverTrust12 Moderator British Liver Trust]

Hi Liver 123,

We are sorry to hear you are struggling. If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 4pm on 0800 652 7330 (excluding bank holidays).

We would also encourage you to try and get an appointment with your healthcare provider, they may be able to offer support and advice on your anxiety and depression.

Best wishes

British Liver Trust

[Liver135 in reply to BritishLiverTrust12]

No they said can’t help with panic attacks when asleep watching 3 years for a liver specialist dietician . And they don’t know about hire haemochromatosis diabetes conflicts with this no one works together .

[Liver135 in reply to BritishLiverTrust12]

they can’t do anything I’m on my own

[coldermom]

Hello, I'm sorry you are dealing with so much by yourself and agree that it is difficult to wait. I was diagnosed with Hereditary Hemochromatosis and genetic Primary Bilary Cholangitis a little over three years ago. I'm in the US and go to a well known clinic, but they were no help when I asked for dietary guidelines. I discovered hemochromatosishelp.com which was a starting point. Sunnyskies33 gave you a good list of foods to avoid. I would try to avoid or limit alcohol, red meats and fatty foods. There are foods that can help block the iron you absorb through your diet. Dairy, tea, coffee, and whole grains are some of the foods that help limit the iron absorption. Reading food labels helped me find snacks I can eat like crackers, cookies, and chips. Diet probably doesn't affect the iron absorption a lot, but I watch what I eat and haven't needed a phlebotomy in two years and counting. Good luck.

[Liver135 in reply to coldermom]

Not supposed to have bread or crackers I don’t drink tea or coffee coffe makes me sick . No bananas no grapes no butter any butter no tinned food . Only brown rice. No restaurants I’m birmingham to go to .I paid 20 pounds in carvey for 3 veg lol couldn’t have roast because they are white potatoes. Most veg are out off the window lol . No code or fish fingers only samon and tuna once a week. Chicken only once a week. Iv seen 3 different dietician . They all say different things.

The Mediterranean diet there are imitations to that to and availability in Birmingham . I’m not working I spine problems . I’m depressed and anxiety .1 have a bridge across my top teeth that needs replacing can’t afford it .my quality off life is not good and the is Bleak..

I’d like to see better cooperation Between hospitals departments and doctors and Dieticians , mental health teams .they need to start talking together because they are not for me .

[Icecream-lover]

sorry you are so and not getting the help you need. As advices contact the help lines . Also if your a man reach out to MANDOWN , look it up it’s men who feel just like you if a woman there is WAVE . If your having night time panic attacks try and find something to focus on I’m not medical but I have bad nights. I find a fairy lights on so not dark and put a pod cast on. You got borrow box which is a free on line library, you just need a library membership number, if not got one you can get online and you can borrow audio books, ebooks and magazines. I put one on and listen to it and just focuses your mind . I gave one copy of c28zy w/o a carrier but my liver function tests are high , my iron low and I got non alcoholic fatty liver. When your down it is all very consuming, go to a food bank if money is tight use resources available to you. I have councilling via zoom once a week and it’s with wave and it’s so helpful . You can talk, moan , cry .

Good luck ,wishing you all the best

[Brentford1965]

hi i have a diagnosis of hemochromatosis i started venasections increasing frequency twice weekly for several months eventualy my iron levels reduced to a stable level and i am having regular blood samples so they can get me into a maintenance phase less often venesections for life unfortunately

the thing is that they said at the point of diagnosis you can't fix the problem with diet but try not to eat iron rich food ie liver or take iron in vitimin pills while they were trying to bring down my iron overload

now I'm being given multiple scans and appointments due to my liver and other organs damaged by the iron which is much more serious than the original problem

i lost a lot of weight in the first six months removing all the processed food suggar carbs no flour seed oils fizzy drinks

done the apple cider vinegar lemon juice eating healthy fats helps with hunger advacados

all helped lose weight but didn't change the iron situation

don't know if this is helpful but good luck with your health situation