Hi. I'm Connie. 41 year old single parent. Just been told this week I have Cirrhosis :( I have a long way to go before I get any answer

[Chaibooboo]

Hi. Just wondering if anybody here has heard of Milk Thistle? Or taken it?

[AyrshireK]

Sorry to hear of your diagnosis. The British Liver Trust do not advocate the use of any alternative therapies as they are not clinically tested and any positive results that people report are only anecdotal and not proof of any benefit. We have members on the forum who have been told NOT to take Milk Thistle by their clinical team as although it is marketed to help the liver in some cases it has been found to be harmful or to worsen Liver Function Test results.

Do educate yourself about cirrhosis so you know what to look out for and to make sure your medical team manage your condition appropriately. When my hubby was first diagnosed in April 2012 I found the British Liver Trust page on the condition a great help. It is at:- britishlivertrust.org.uk/li...

If you get any questions then fire away, you will hopefully find great support and advice on hear from folks who have been where you are now (or like me are supporting a loved one with the condition).

All the best, Katie x

[Chaibooboo in reply to AyrshireK]

Thanks Katie. I am just at a complete loss at the moment. I am not a heavy drinker and have previously been tested for Hep. It just doesn't make sense to me. I am awaiting to see the liver specialists so I know a bit more, but at the moment, I am terrified

[AyrshireK in reply to Chaibooboo]

Hope you get some answers soon, they need to identify the cause of your cirrhosis a.s.a.p. You don't have to drink at all to get liver disease - my hubby is life long t-total and yet was found to have late stage cirrhosis completely out of the blue and his liver biopsy indicated that he had suffered from a strange presentation of Auto-Immune Hepatitis.

You will likely have to endure a few more tests so see if they can establish a cause - sometimes it can be managed through lifestyle changes, other conditions requre treatment, There are all sorts of things that can cause liver damage (viral hepatitis, lifestyle issues, auto-immune conditions, non-alcohol related fatty liver disease, genetic conditions).

Going forward you will need to be properly monitored with frequent scans, bloods and check ups to keep a check on any additonal symptoms which having cirrhosis can throw up.

There is always someone on here to vent to or ask questions (we arn't medics but provide answers based on our own experiences with the condition).

Katie x

[Faithfull in reply to Chaibooboo]

The terra is what I have the not knowing I'm here for you if you just need to express. Emotions as I feel lonely sad ect ect but beautiful people here to help us

[19581979 in reply to Chaibooboo]

Hi like Katie said it is important to be careful about what you take. I got my official diagnosis of my condition in August. I have non alcoholic fatty liver and cirrhosis.

I haven't drank for about 37 years. I wasn't a heavy drinker even then.

I have been told to lose weight as over time due to physical issues, comfort eating etcetera I had put a lot of weight on. I have also been advised to exercise more. This is more difficult but I am trying. Getting a healthy weight safely is really important. I have also been on painkillers for a very long time.

Like you I am still not had specific reasons for it happening. It could simply be lifestyle, but I am still having a lot of tests done.

I have told my specialist exactly what I take in terms of meds and supplements I am taking omega 3,6,9 vegetarian supplements. I believe that getting all my nutrition needs met naturally is far better than taking supplements, but I just don't eat fish that often.

Good luck with your journey. Listen to the professionals supporting you and make sure they know about any supplements that you take.

G

[Hidden in reply to Chaibooboo]

i dp not drink and that was mine and a few other peoples idea that u only get cirhossis if u drink my specialist explained tp me this is a differnt sort pbcits the bile ducts and actually a auto immunes disorder x

[Pussycat432 in reply to Chaibooboo]

Chaibooboo I don't drink alcohol at all as doing like the taste I still got autoimmune hepititis I was horrified as I actually thought y have I got liver disease when I'm tea total but it's a misconception you don't have to be a drinker to get liver disease how long have you had liver probs I've had auto hep ten yrs

[Faithfull in reply to AyrshireK]

I been taking them I am trying to hold down this diagnosis as I'm getting idler as I have had so many ops tests got 3benign tumors one in me head PTSD ADHD and I'm confused on a good day if any I'm sorry but the dr said take them and I have no support and feel bad I gave the wrong answer I feel really bad I'm so sorry

[AyrshireK in reply to Faithfull]

Don't feel bad Faithfull, if your medical team is happy for you to take it then that's ok, however, when someone isn't yet fully diagnosed as Chaibooboo is it might be dangerous for her to take something which hasn't been okayed by her medical team. Like I said we have other forum members who have been told absolutely no owing to it actually having a negative effect on their livers. I believe some of the UK distributed Milk Thisle also comes in an alcohol based solution so that would also be something worth checking on your supply.

The British Liver Trust always say no to alternative therapies, my hubbies medical team has said no to any additional supplements etc.

Look after yourself,

Katie xx

[Faithfull in reply to AyrshireK]

You are an amazing person .

[Faithfull]

I'm diagnosed with early cirrhosis and yes I take them and also thiamin B1 advised by a gp that had it himself there worth taking and Holland and Barrett do a eal sometimes so I let u no when it's by one get one free hope this helps I.

[Faithfull]

Sorry I gave u reply and read next one take no notice of my one sorry but that's very bad of me and I'm sorry I was told to take that I'm sorry

[carllovatt]

hi chaibooboo until you have a diagnosis and a cause it is very unwise to self medicate,

BUT what you can do is cut down or out salt

drink more coffee [any] sort,

and keep your bowels in good order.

not much i know!!! but Look thru the british liver trust web site [ that what it is there for ]

[MavisDavis66]

How did you get diagnosis, was it from a fibroscan? I had fibroscan stage 4 at Xmas just gone and nurses gave me impression stage 4 cirrhosis. But when I seen Doc 6 months later he said fibroscan is a stage but I only on early stage of cirrhosis.

I am 5 out of 15 on the cirrhosis scale, compensated not decompensated. Doc said I could do normal life if I behave etc

[Chaibooboo in reply to MavisDavis66]

My Dr has just left me hanging. Told me i had Cirrhosis and nothing else, just to wait to hear from the Liver Specialist. My head is all over the place.

[ange1960 in reply to Chaibooboo]

I'm in the same boat Chai, got copy of letter from hospital a week ago following some tests, and it clearly states I have Cirrohosis. It was like a bolt out of the blue. I'm convinced mine will be due a medication I have been taking for a heart issue for the past year. It can cause Liver Damage. It's the not knowing what it means that's so hard to deal with at the moment isn't it. I know I will be having a Liver Biopsy, but not when. I don't even have a clinic follow up appointment organised. Just waiting for a letter. Of course I've been 'googling' and I think that makes it worse...! Trying to stick to this forum and the British Liver Trust Website, and the NHS site for advice and info.

I'm finding it helpful to write down the things I want to know, the questions I have and the things that worry me, so when I do eventually see the specialist again I can be sure that I don't forget anything in the stress of consulting room appointments. You might find that helpful too? I do feel for you, I know just what it's like. It feels like a devastating diagnosis and to have no follow up organised is hard to deal with. Try to stay positive and well. Hopefully you (and me) won't have to wait too long for appointments with Specialists. good luck

[Miche49uk in reply to Chaibooboo]

That's not fair it's, unless one has nerves of steel having something like cirrhosis hanging over your head with no support isn't good...

[Mel2637]

When I was diagnosed 6 yrs ago I read everything I could find on cirrhosis so I would be well informed about my problem. Also this site gives good advise from people who have been in different situations. Good luck

[mrsmerlin]

Hi

As the others have said check with your medical team before taking supplements, some say yes, some no depending on your particular case.

I also get why you are so panicked about the news given your situation. I was a single parent years ago when I went through a battle with cancer. Leaving the kids terrified me more than anything.

I'm a firm believer in what I call umbrella protection - as in when you take an umbrella and it doesn't rain. I made complete plans for every eventuality and it helped me enormously. Knowing my kids would be safe and well cared for helped me to relax a bit and concentrate on my fight. The scariest part of my diagnosis was my kids being left.

Cirrhosis is not necessarily the death sentence it used to be as treatment options and transplants are improving all of the time.

You will get lots of support on here and you are bound to find someone in your situation to share advice and support with.

Rita x

[Hidden]

I hope you all start to feel better soon

I've got Nash and fibromyalgia, I'm finding it difficult cos of pain but you are all going through worse than me. Please take care. Lots of love Lynne xxxx

[Hidden]

Hi all,

Some of the replies on this thread recommending specific supplements have been deleted.

The British Liver Trust does not recommend the use of any homeopathic or herbal remedies for those with any liver problems as these have to be processed by the liver and can actually damage the liver and lead to severe illness.

More research needs to be done on the use and safety of such remedies and therapies.

Homeopathic remedies are unregulated in the UK and concentrations of active ingredients vary by brand purchased. If you are considering using complementary or alternative remedies &/or therapies please always discuss this with your liver doctor first.

Please see our page on complementary and alternative medicines;

britishlivertrust.org.uk/li...

Connie, welcome to the forum, we hope you find it a supportive place to visit. If you need to talk our helpline is open 10-3pm om 0800 652 7330

Warm wishes,

BLT Admin

[Cathy-anne]

Ho Connie I take 6grams twice a day and have for years.It is amazing.But don't take too high of a dose or your liver will detox.i have cirrhosis also and I am a single 54 woman.Good luck Connie it's a long ride.To end up where? I still don't no.Having a bad day today after a bad night of crazy thoughts that I never have had before.life is scary xxx

[Chaibooboo in reply to Cathy-anne]

HI Cathy. Thanks for your reply. I;m sorry to hear you had a bad a bad day. I only got my news a week ago and my days have been up and down too. I hope today is better for you. Thinking of you xx

[phyllisskoe]

I have heard of milk thistle and have taken it. I don't know if it is good for cirrhosis but for liver cleansing it is..

[Pussycat432]

Chaibooboo on the question of milk thistle I was told never to use it I obviously don't know about everyone with liver disease my my liver specialist was adamant I mustn't take it

[Aasamazafar]

Hy.black seed oil help you