Answers at last and amazing good news! - British Liver Trust

British Liver Trust

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Answers at last and amazing good news!

Radnor
Radnor

I went today to get my results from the ARFI scan I had 12 days ago. This test is only for people with Nash and the criteria is all listed on NICE guidelines. In just 3 years I appeared to have gone from fatty liver to cirrhosis. I was informed today that Fibroscans are inaccurate in 20% of people, me being in this group. As most of us know just blood tests or a fibroscan dont always give a full picture. I was told in December my fibroscan showed cirrhosis. ,NASH. My bloods were totally normal apart from cholesterol at 6. I was advised to eat low carb and I stuck to it, even over Christmas. and New Year. I had extensive bloods taken and returned in March. The consultant re iterated my fibroscan indicated cirrhosis, but he wasnt convinced , again all my bloods normal. The news I got today left me speechless! I dont have cirrhosis, or severe fibrosis or fibrosis. Fatty liver is now my diagnosis and today is NASH Day! I will work on losing more weight, but to keep my liver working well. I had said I dont drink alcohol and this was evident in my blood tests. After being on this site I realise I am extremely fortunate. I hope this may help people who are unclear and the NICE guidelines on this test are very specific, but worth a look , I can't be the only one tis happens to. I can now get travel insurance too, not at a price out of range. I am not techie enough to add the NICE guidelines, I'm sure someone will add this . Hazelxx

38 Replies
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Hi Hazel. What great news for you. Lovely to hear a story like yours. Book somewhere special and have a mega chill out. Best wishes Alf :-)

Thank you Alf.It will be Mallorca, I stay at my friends apartment ,been most years for over 30 years. It's right on the ocean, and perfect for doing zero .xx

Sounds ideal :-) :-)

So pleased for you love xxx

Radnor
Radnor in reply to Countrywalks

Thank you, My family and friends are happy for me, espeially my daughter who was with me for both appointments, hr and her husband hhad both said I can have some of their liver if compatible I am going to get up people's noses telling them about fatty liver, lol. xx

Hidden
Hidden in reply to Radnor

Hi

I'm so pleased for you, you are an inspiration. Love and hugs Lynne xxxx

Radnor
Radnor in reply to Hidden

Thank you Lynne, It is strange that losing some weight brought down my BMI to under 30. This is part of the criteria for ARFI. I was following low rb to prevent my cirrhosis from worsening. I cant believe it, it qualified me to have the ARFI - not what I expected, at all, being told I just have fatty liver! The specialist who did the scan was the man who presented the procedure to NICE. The flow charts are so detailed. Being told that 20% of people dont get a correct result from fibroscans I have realised my body is 'odd' in many ways. I can't be hypnotised, only 2 to 3% can't be. If I hadnt asked for a 2nd opinion and hadnt asked to go Royal Liverpool, I would not have been in this position. Hope you are feeling better now, xxx

Hidden
Hidden in reply to Radnor

Thank you. I'm in permanent pain with my many conditions as I'm sure many other people are too. Take care. Love and hugs Lynne xxxx

davianne
davianne in reply to Hidden

Oh Dear God, you poor girl Lynne, why haven't they got your pain control sorted out. Are you under a pain management team? No one should have to put up with constant pain like that. I know pain medications can be difficult for people with our conditions, but surely they must be able to offer you something.

My thoughts and Prayers are with you 🙏🙏🙏

David

Hidden
Hidden in reply to davianne

Thank you so much. I did go to pain management near me who were useless. I've been referred to another one at hospital for pain injections but that will only be where the nerves were cut. Hopefully when I'm on the duloxetine I will feel a bit better. Consultant said it won't cure it but we can hope for about 50%, anything is an improvement. Thank you for your concern. How are you feeling today? Take care Lynne

davianne
davianne in reply to Hidden

I hope you get on the new medication soon, to ease your pain. I know being in constant pain is soul destroying, that's why I go to bed at 8pm with my Amitriptyline, It's the only place I get some relief.

Thanks Lynne for asking, I am suffering with a really full on cold just now. I think I got it from my 6 year old Granddaughter when she and her family came over from Seattle for my wife's 70th birthday. So it must be an American cold. Normally my flu jab takes care of colds (not had one for 5 years) My temperature has gone down a bit , 38.1C

so trying to keep myself warm.

Take care

David

Radnor
Radnor in reply to davianne

Snap on the amitriptyline. Can I ask what strength you take? Its a pain that they come in 28's, its vital I re order in time as otherwise my pain and muscle stiffness stops me sleeping. I am on 75mg , have been for 10 plus years. I wouldn't risk a flu jab because of my liver, but I will this year. I was also offered a pneumonia jab and qualify for a shingles one after having it 4 times! I had the most thoughtful Christmas gift off my 14 year old granddaughter.A heated throw. All her own idea and her own money too. I had washed it and put it away but as we have had summer I'm using it again! Saves having heating on and means the place isnt baking. Breathing in cool air but snug as a bug.

davianne
davianne in reply to Radnor

Hi Hazel, I only take 20mg each night. I feel hungover if I up the dose. I have always had the flu jab, and have had the shingles and pneumonia jabs. Have you been warned about having the flu jab with liver disease? My GP gives me my jabs, and he has never said there was a concern. To help with my aches and pains I use an electric heat pad, a tens machine and ice packs depending on the type of pain. My wife was a Matron before retirement, so her medical knowledge comes in very handy. I will look out for the heated throw, that sounds great.

David

Radnor
Radnor in reply to davianne

I decided myself about having injections. Now I will have them in Autumn. I actually had pneumonia when I went in for my emergency op! Told I had a virus so obviously it wasnt. I use wheat bags too, great for pain. Crock r us eh? xx

davianne
davianne in reply to Radnor

Hi Hazel, yes we used to use the wheat bags, but found they got burnt in the microwave and leaked seed everywhere. We now use the gel ones which can be microwaved or frozen, and you can buy a velcro elastic belt with a pouch for them, so can put them anywhere you need relief. I certainly feel like a crock sometimes, but the trouble is in my mind I'm still 25, so try and do things I shouldn't 🤣🤣🤣

David

Radnor
Radnor in reply to davianne

My mind too. I have the timing down to precise measure now and I was fortunate to find some good sized ones in my local health shop. A lady makes them for charity. I made covers for them so they can be washed and she uses good quality cotton curtaining and industrial stitching. Lots of rubbishy ones sold and yes the smell is vile if they burn. I have the gel ones but keep them in the fridge. hot and cold treatment is a great way to reduce some joint and muscular pains. Its a pity WD40 isnt suitable lol .It eliminates creaks and locking in so many things. . Hopefully our comments will help some . I have never been one to buy anything from so called health food shops, but my wheat bags are priceless.

davianne
davianne in reply to Radnor

I'm with you on the health food shops. Funnily enough my wife, who was a Matron before retirement, takes all kinds of supplements. She takes so many she rattles 🤣🤣🤣, But she is still running 4 times a week in her 70th year, so may be something in it. I've never tried Voltarol, but my sister swears by it. I did once try horse liniment, but after application, no one would come near me🤣🤣🤣

David

Radnor
Radnor in reply to Hidden

I know exactly how it feels, fibromyalgia is so similar to rheumatoid arthritis, apart from our joints dont swell. I thought of you when I got my results because I know you have NASH.Anti inflammatories do help but are a definite no no. As you know I have a buprenorphine patch which brings the pain levels to a 5, without it its 11! Before I had had the ARFI I discussed all my meds with the consultant. He said its all a balancing act, quality of life is so important so he okayed my patch. I really feel for you.You have pain from your Nash too so its amazing how you keep going. xx

Hidden
Hidden in reply to Radnor

Hi

Thank you. How are you feeling today? Patches didn't work for me. My family say the same. They say you are smiling most of the time and I said moping about won't change anything. My youngest has Crohn's disease and copes so well, he had to have a bag on for 6 months when he was 19 and was brilliant. My eldest has bowel issues and hubby has migraines. But my youngest said the drs are trying to give you something for every letter of the alphabet!!! Love and hugs Lynne xxxx

Radnor
Radnor in reply to Hidden

I keep smiling but feel so relieved about my liver I look a picture of health! especially if my skin is hidden. I am pro active about all my itisists, enetic on both sides but not giving up on being mobile properly. I imagine that like me you would wish it was you not your boys suffering. I am the same with my daughter, 2 major ops in the past 2 years and severe depression. Thankfully her meds are working after a lot of time finding the right ones. I often think people must see me as a hypochondriac, but all the specialists I am under confirms I'm not plus got the scars too . We are probably creaking gates lol. For non northeners the saying is a creaking gate lasts longest. Keep smiling Lynne , better having laugh lines than a furrowed brow xxx

Hidden
Hidden

So happy to hear you heard the best of news!!

Radnor
Radnor in reply to Hidden

Thank you so much. I should be in bed asleep but still on cloud nine It was international no Nash day for me xx

Hi Hazel, what wonderful news 😁😁👍👍 Fatty liver is easy to manage with a good diet.

I wish I could get affordable travel insurance, but sadly for me that will never happen.

Now book a nice holiday and have fun😁😁😁

David

Radnor
Radnor in reply to davianne

I had resigned myself to not being able to travel abroad again. I didnt even realise fibrosis was serious until I attempted to buy insurance! I risked Jersey over a year ago. I was with my daughter and granddaughter and said if I die then have me cremated and scatter my ashes here.They loved the island and got to see where my Dad was born. He was evacuated at 14 to England, when the Germans occupied the island. I didnt have to spell my surname out, as I do everywhere else. I truly feel for everyone who can't travel overseas now. I was told I have severe liver fibrosis, then cirrhosis. I had no symptoms so assumed I was compensated.Hope you get to see some of the beautiful places we have here. I had a list in my head to re visit. I realise how lucky I am xx

davianne
davianne in reply to Radnor

Hi Hazel, what a wonderful history you have in Jersey. I should be in Canada with my wife right now visiting her sister up in Whitehorse, Yukon to celebrate my wife's 70th birthday . I could only get travel insurance at a ridiculous price....Just over £2000 for 2 weeks, so opted to stay at home.

I am having a holiday in Crete in September, but this might be my last foreign trip after Brexit, no EHIC card to get treatment in the EU. I have stage 4 Cirrhosis (compensated just now) You are right, I will visit my birthplace in the Lake District, and when the time comes, I want my ashes scattered on Crummock Water, where my dad's ashes were scattered. The isle of Man is also on my list, where my grandmother was born. My bucket list is endless, so I will have to prioritise. 😁😁😁 Enjoy your good news and your healthy future. Have Fun,

David

Hidden
Hidden

Well done Hazel, l'm very pleased for you.

Radnor
Radnor in reply to Hidden

Apart from dropping some weight I can't take the credit for this at all. Ok, being under 30 BMI enabled me to have the ARFI.The major bowel op I had was not a good way to lose weight, I was starved for 9 days afterwards. My large and small intestines had torn away from were they join, which was under my right rib cage. I had a very swollen tum when it flipped into my abdomen. This had happened on many occasions. It became an emergency when it flipped and twisted. but all the credit has to go to my consultants. I had no idea that fibroscans can be inaccurate in 20% of people. It was there in black and white, I had cirrhosis! My discovery is totally down to my consultant looking at all my test results and recognising that the information didnt match up. I looked on here to discover what an ARFI scan was. Never in my wildest dreams did I expect this outcome. I never go googling except on legitimate sites but I found no references at all to fibroscans being anything except pretty accurate in the main. I had 4 in 3 years. Each time my liver appeared to be progressing to cirrhosis. I realise it is not an everyday occurrence, I shared this to demonstrate that sometimes an excellent consultant who is tenacious is priceless.I wonder if it was my intestine that was picked up by the fibroscans? How strange that on international Nash awareness day I discover I don't have it. I will be a pain now telling everyone with a fat belly what they are risking. Just fatty liver is is not a 'just' at all.

What lovely news! You must be thrilled, and it is encouraging for the rest of us too😉

Enjoy your well earned stressless break xxx

Radnor
Radnor in reply to erica1960

Thank you. I am still in shock , I realise that I was fortunate in finding an excellent Liver centre, I am delighted that I can now try a new medication for my psoriasis. I had been on Methotrexate for 7 years and so I had no reason to question my result.There is a 2/3% potential for liver damage. I asked for this 2nd opinion because I had no follow up and had never been given an explanation on the seriousness of severe fibrosis. Just told to lose some weight. My GP was in total agreement with my request, he was puzzled as to why all my bloods were normal as well. Only effort I made was losing some weight, x

Great news

Fantastic news! Amazing what a healthy lifestyle can do, make sure you stick to it....easy to become complacent with FLD

Radnor
Radnor in reply to Owlie

The only effort I made was losing some weight from Dec to February. Being on a low carb diet over Christmas and New Year wasn't easy lol. I then was hit with a twisted intestine which was life threatening. I lost more weight as I was starved for 9 days! I had to eat a diet suited to being post op, I was weak and could not even open a soup tin. I have now re built my lost muscle and actually regained some weight. The words haggard and gaunt were so justified. I eat a lot less now. I always had my 5 a day, but I can't take any credit really. I had no idea this would be the outcome of the ARFI, I was expecting to still have severe fibrosis. I also discovered that psoriasis can cause fibrosis! I have always been a confident person, I will be ensuring people realise that fatty liver is a potential danger for more serious liver conditions. My consultant deserves all the credit. He went far more than an extra mile xx

Hidden
Hidden

Awesome news! Jaycee

Radnor
Radnor in reply to Hidden

Beats a lottery win for sure, something money can't buy xx

Hi Hazel,

Congratulations on such good news.

Best wishes,

Mary

Thank you Mary, still on a high xx

That’s fabulous news - I bet you floated out of that appointment with a big grin on your face, I know I did a few weeks ago - spent the day beaming at total strangers 😃

Have a lovely holiday too and well done!

They want me back in 6 months to do another fibroscan, but I was told if its high they will know for certain that I am not a candidate for them. I just thought oh I'm compensated. No, I get incorrect readings lol. You have every right to feel very proud of yourself. Stopping drinking is a real test, I have seen how alcohol is a very tough addiction. I just went off drinking when I contracted Epstein Barr Virus. Just the smell of red wine made me wretch. I said I wondered if the virus could help people to stop drinking, but it left me well crocked. The radiologist had said my ARFI scan looked good, but I expected to still have severe fibrosis. My immune system is pretty weird. I react badly to a lot of psoriasis meds, but had zero side effects from Methotrexate. I was on the injections for 7 years so it was feasible that my liver was damaged. Happens in 2 to 3% of people. Hope you continue keeping so well, xx

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