sorry to bother you all again, please feel free to ignore me, but I just feel so fed up and need to rant… I saw the nurse on Monday she didn’t think I had muscle wasting as she said it would be all over, ( I have read it can be one limb or other 🤷♀️) I also told her that I am upset that no one has followed up any of my results, severe liver impairment scan …. and fibroscan scan of 21.5 kpa, I told her surely I should at least be checked to confirm one way or other in case I need monitoring, I also told her I ache every night in bed, my hands swell and I can’t move them, I worry about rheumatoid arthritis esp as that could be a cause of my liver impairment, they should not just assume life style .. she agreed to do a blood test, the results are back and I need to see her again, I’m really upset cos I have worked my butt off these past four months, exercising, losing weight etc etc and yet my bloods are worse than they were when I was nearly 4 stone heavier and was eating a rubbish diet, why bother I feel like saying 😢….. I won’t give up I will continue but I am getting absolutely no where, I had raised inflammation markers last year and was being checked for multiple myeloma, this was only half checked and then left, then this liver issue came up and that has been left, my esr is even higher that before, it is 40 (should be under 10) my crp hi sens is also higher at 17 ( should be under 5) even my billirubin is higher and although still in range has jumped to 11 when it was always 6 or 7 for years, alkaline phosphate up 20 points as well, my ferritin has dropped from 110 to 94 and I don’t know if higher was better or not, I know you will all say but it’s in range so don’t worry, but I do cos these jumps have happened even though I’m living the heaviest life now, it’s deflating and I feel very upset and confused….the hi sens and esr really worry me, is this also due to the liver, I just don’t know, my red blood cells increase on each blood test and are a good way over the cut off but again no one cares, I’m scared it could even be pbc or whatever it’s called, I can’t keep second guessing, this is doing my anxiety no good at all, it’s not fair, I’m sorry to come on here yet again, but I have no one who understands , I just feel like giving up on everything if I’m honest, which is nasty to say when so many others on here are fighting huge and real fights, please forgive me because it is no reflection on anyone else I promise 😢
At The End Of My Tether: sorry to bother... - British Liver Trust
At The End Of My Tether
It’s all frustrating , is your underlying cause determined? And as for the red blood cells have you been tested for sleep apnea?
No they just keep ignoring the markers being high, so I have no idea of the cause, can liver disease make it raised do you know? And not been tested for sleep apnea, they just say I’m always high, but my argument is that they keep rising 😢
for me I had a bmi of 40 now down to 30 aslo A1c was 7.1 now 5.5 I lost 63 pounds also got my LDL down to 60 and all bloods in range. My underlying cause was metabolic and a terrible diet. My liver enzymes were occasionally elevated but just slightly. I’ve been at this a year
Wow well done , your hard work has paid off, did you have high inflammation markers? Also did you have a fibroscan x
My ast alt over the years have been mostly normal range, I have had a few that were slightly elevated, I did have a fibroscan test last year in august came back moderate to severe fibrosis/steatosis.ultrasound showed enlarged liver possible steatosis. I had high A1-c and lipids, BMI of 40. When I had the Fibroscan done I had unknown elevated ferritin wich some have said is a inflammation marker. That has since come to normal as well. In February I was down 45 pounds and was sent for a Fibrosis blood test came back minimal fibrosis, No activity , Minimal steatosis. Kept at diet and excercise and in May was no longer type 2 and down 60 pounds all lipids normal and had a fib4 index ran in the blood work as well and was well below 1.30. Done by quest labs wich included a full hepactic panel. Also in may was sent for ultrasound and report was now Normal size liver and Homogenous Parenchyma (Normal).Heptologist said you’ve put yourself ahead of this thing by loosing the weight and sugar control. I have a upcoming fibroscan in November. My Dr was adamant about loose the weight and get the sugar in control. It’s been a long year and I’m hoping to get the next test done. As for the first fibroscan I’m not sure if it could have been overestimated due to the ferritin and BMI of 40, I wish I had had the fibrosis blood test at same time to compare
You really have done so well, I have lost 3.5 stone since march and habe upped m exercise, but your turn around is amazing, I hope you are pleased with yourself cos you really should be xx
I’m trying, I understand what your going through it’s been a hard journey and. Always on your mind with every thing we eat or drink.
Totally agree about worrying what to eat and drink feel , I also feel so alone and tbh it is not doing me any good mentally now, you keep at what you are doing my lovely, you deserve the amazing results for such hard work xx
Don’t get down, keep at it. It takes a while to get going but your doing it already with weight loss.
Thank you hun, it’s just the not knowing what is going on that bothers me, and these high esr and crp have really got to me xx
That is amazing! Good for you! You have saved your life by your lifestyle changes! I love to read stories like yours where you have reversed the "no return" outcome! I tried that approach when I first was diagnosed because I was told it was early cirrhosis (NASH) and I was in denial thinking I could reverse it if I lost weight, healthy diet and exercise but unfortunately for me it didn't change the fact I have cirrhosis. It helped my numbers but I still had cirrhosis. Getting back to you, keep up the good work!! It sounds like all your hard work wasn't in vain, you've saved your life!!! Feel good and proud!! Even though I don't know you, I'm proud of you!!
Thank you, I myself had a had fatty liver for years but this year fibroscan was introduced as it was a new test and with those results i starters to take it serious. Over the years my ultrasounds were the increased echogenicity, slight enlargement. And some would be normal size. My enzymes were mostly in range only 2 times slightly out of range. Platelets have never been low. A1c and HDL cholesterol was out of range for years. So finally getting this all under control I’m hoping for a better fibroscan in November. My dr said don’t worry about numbers just loose the weight and get that sugar under control.
What diet did you use?
I had a terrible diet probably 5-8 thousand calories a day and no regard for sugar drank sodas candy cookies chips pizza you name all the bad stuff I ate it. I started august 25,2022 I now eat oatmeal with berries or banana with a table spoon of peanut butter to knock down the sugar protein keeps it from spikes, or I’ll have eziekiel toast with a egg. Lunch I usually have a salad or turkey chicken sandwich lett, tomato mustard on Dave’s bread. Dinners have been turkey choo meat or chicken and wife makes a bunch of dishes with that and for mid day snacks I eat salt free cashews or pistachios. I keep calories below 2,000. I get 30 minutes of excercise in mostly walking. I’ve been lucky as it’s come off easy for me. My diets was very bad so cutting it down to normal and watching my sugar really helped .
Thanks for the information. I am working on the same path. I am now dealing with Ascites. It’s hard to go for weekly drains and see the scale move the other way and know how you are working and trying to do. I am scheduled for the Tips procedure in September. I am hoping this will help all around.
Dear Sophia1968
If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
Thank you so much x
what was your ALT ?
Alt was 13 x
That’s very low. My alt jumps between 120 and 160 and that’s not considered dangerous even though it’s 3-4x the reference range. I’ve been waiting for months for a scan after a compensated cirrhosis diagnosis with a fibroscan of 28 so I can certainly sympathise with the stress of the wait. It can be a nightmare not knowing. All the best.
Thank you for understanding, I hope you get the follow ups you need as well, many keep telling me to be positive and on the whole I really am, but clarification is all I ask really xx
Hi,I do not have ANY technical knowledge. Diagnosed with compensated liver in January 2023.
All I CAN do is let you know you're not alone and hope that doesn't sound too hollow.......
I know you are crying out for diagnostic clarity, which is completely understandable! It sounds less than satisfactory so far!
However, I can offer you support in the sense of not worrying about posting. There seems to be alot of knowledgeable people on here who are willing to share their thoughts.
Don't give up sweetie , it sounds like you've come so far and tried so hard! That's something to be proud of!
Kindest wishes
Kaz xxx
Aww Kaz thank you so much for your very kind reply, I do appreciate your words , xx
hey Sophia
You sound down and frustrated by your numbers but, you lost almost 4 STONE!!!
That’s awesome!
Regardless of what the numbers say, without question you are healthier overall and physically better able to cope with anything that comes. You are doing a fantastic job at helping yourself.
The waiting and wondering is incredibly difficult, we all feel like that, but keep chasing up with the powers that be and asking questions, you will get there.
Thank you hun, I will keep pushing , but you are right, I do feel better health wise and I know im in a much better place now to deal with it all, that goes a long way , thanks for reminding me xx
Hi Sophie1968, we all I am sure have to rant and rave at times on here, so please do not feel guilty and no one cares as we do. Pick up the courage and phone the Liver Nurses on here as I am sure they can help you with all your anxieties. Chin up and no that we do care xx
Mick thank you so much, I will call the liver nurses on here , I do not have one myself to contact, and instead of hiding behind my key pad I need to actually call them, I keep putting it off, but you are right, next week I will pluck up that courage thank you and thank you for your kind words xx
Hi Sophia. I have PBC, Need weekly blood transfusions, 2-3 monthly iron infusions, 8 weekly endoscopy to do ablation wok, I’m now waiting to see a rheumatologist as I think I’ve got Ra and it’s so debilitating. I have other autoimmune problems etc etc. stop focusing on numbers which can be a wrong indication. Concentrate on living the best day you can. Focus on positivity not negativity. I take the attitude of get on with it I rule my life not some bloody illness. I get very high numbers but what the heck they are numbers it’s how or what treatment you need, which with PBC is very limited. We all have good and bad days. I focus on oh well tomorrow I will feel good. PBC won’t kill you like cancer, people live long happy lives with PBC. stop fretting get some relaxation techniques and think positive. Hope you learn to lower anxiety levels. I’m lucky I’m not a worrier. I don’t do negative. I am in control not my illness. That’s why I call myself control freak. But life is good. Especially when I see the state of some people, I’m l
lucky. Be happy
Thank you I am usually positive, the only times I’m not are when I’m on here, usually I’m fine , I get more frustrated than down, but I enjoy my life on the whole , I’m asking for clarification really that’s all, wishing you well going forward xx
These sites are really good in one way but can be bad as it’s so much information and we could read too much into what is being said. I was convinced I was going to die by all the info I’d read. I bought my burial plot arranged church service etc. even gave away lots of jewellery and other possessions . I’m not dying as I thought I’m just not well. But on the positive I’ve got funeral all arranged paid for and how I want it. And the other positive is I’ve had a great clearance of house. Every cloud has a silver lining. Plus I can laugh at it all now. But this is me and how I cope. All the best for the future.
Aww bless you , it must have been a very worrying time for you, im just glad you are in a better place mentally and are in control , there are always silver linings in everything really, as for saying I’m only down on here I meant that is when I come on here cos I’m down, not cos of what I have heard or read, although some stories are heartbreaking and make me feel sad, but I’m only human and you can’t help but be touched by things can you xx
I just keep taking the pills 101 a week. Before this I took two lanzoprazol a day that’s if I remembered. Having lots of family around make everything bearable.
Aww bless you, I’m glad you are dealing with it all so well and positive hun , having good family helps doesn’t it xx
Hi Sophia, I have PBC and it’s treatable so don’t panic about that. But you do need to keep on pushing for answers. It’s exhausting and frustrating but you must be one determined woman or you wouldn’t have done so well with your weight loss. You mentioned a nurse, is that liver nurse or a nurse at your GP surgery? I think you need to see your liver consultant. See your GP tell them how you’re feeling and ask them to chase up a referral. If you’ve already got a consultant phone they’re se restructuring and tell them how you’re feeling. Failing that call PALS at your hospital. You’ve used us for your warm up, now tell the people who can sort it out. - very nicely and politely of course 😉 We’re cheering you on from the sidelines!
Bless you hun thank you for your reply, you always understand and that means a lot to me, I have no consultant, no liver nurse, and no follow ups , …. The nurse im seeing is the nurse at the surgery, mind you she may end up doing more than the docs have lol, my doctor won’t refer me cos she said all they will do is blood tests which is what we are doing, but she only does the basic tests and what about the scans and camera to check for varices? nothing !!!! I will see how I go on Tuesday , thank you for your understanding my lovely, hope all is good with you xx
Sorry for all of the consternation. I have been there for sure !
If you think you could have rheumatoid arthritis I suggest probiotics- like the yogurt drink. It is supposed to be helpful from what I read. I also thought I possibly had rheumatoid arthritis and I have incorporated probiotic (yogurt drinks) and prebiotics (avocado) into my diet daily.
Whether or not it has helped directly, I am feeling a million times better. My ALP went down too.
I’m not sure but I’ll run with it. 😆
Thank you hun , I was thinking about trying avocado in my diet as it sounds really good for you, do you eat it like a fruit? Or do you use it in cooking ? I will defo try this once I know what to do with it lol, and I’ll try the yogurts, thank you for the tips my lovely xx
lol yes. I wouldn’t cook avocado. I just had some avocado toast with a cup of dark roast for breakfast ! There are lots of recipes. It’s a delicious topping.
I like it cubed in my salad too. With fresh lemon juice and olive oil for dressing.
Hey…. I just slice it up and eat it sometimes. 😂
the pro and prebiotics help reduce inflammation in the gut. So it helps the body systematically.
Hi Sophia1968
My partner was exactly the same he scored around 15 on the fibroscan etc and suffers with random pain and inflammation a friend suggested it may be fibromyalgia so after 2 trips to the drs he was diagnosed with it the same symptoms are swelling, pain, insomnia and restless eggs amongst many others and is bought on by physical and psychological trauma which with what you’ve been through I think you may be the same just a thought !! I hope this helps you !!
Bibby
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