Worried and concerned : I am new to this... - British Liver Trust

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Worried and concerned

Lindy65 profile image

I am new to this very helpful site and have a few questions . Whilst checking my liver in 2015 a tumour was found on my right kidney so all liver investigations stopped and my right kidney was removed( tumour benign) in 2017.

I have a NAFL( fibro scan last week and results with doctor tomorrow ) , one kidney, under-active thyroid , newly diagnosed as type2 diabetic( no medicines ) and now on cholesterol tabs . Are these all connected in some way. All very strange after my yearly kidney checks in March 2021 everything was fine with my blood no high cholesterol or diabetes . In a matter of 6 months I have all these problems , the only thing added to my body was the covid vaccinations , could they have anything to do with it? or am I just unlucky .

48 Replies

Hi Lindy and welcome. 🙂

I'm pretty sure that there is a link between thyroid problems and liver problems. As for diabetes, I have type 2 and was taught that we can have diabetes for up to 10 years before it is diagnosed.

I never look at my diagnosis as unlucky, I think the unlucky people are those who never get diagnosed or diagnosed too late. So I think myself lucky.

You seem to have been given an unfair share of problems all in one go Lindy. I don't think it is related to your vaccine. But we are a friendly community here and very supportive and hope you are going to stay and join in.

😊

You will always find advice, some humour and lots of helpful information as well as a place to voice worries or just to rant, we love all input.

Dave

Lindy65 profile image
Lindy65 in reply to DavyGravy

Thank you sooo much . It’s so great to be able to voice my thoughts/ worries to people who all have similar issues and can understand where I am coming from… Lindy 😊

Hi I have underactive thyroid and been on medication ( thyroxin) for 20 years. Also have other autoimmune conditions including very high rheumatoid factor in blood although I do not have rheumatoid arthritis only osteoarthritis. I’ve been diagnosed with fatty liver after an ultrasound and after an ELF test which indicated possible significant fibrosis . I’m having a fibroscan on Thursday and today had blood tests to check for different liver diseases. Worried I may have autoimmune hepatitis to go with the other autoimmune conditions but hopefully I’ll find out soon what’s going on. Let us know how your fibroscan goes. We can compare notes!Take care

Lindy65 profile image
Lindy65 in reply to Corin1950

Thank you too Corin 😁 I never expected to hear from anyone and here I am hearing from two lovely people. Sorry if I sound bad and please don’t be offended but is autoimmune not good … at the start of my journey so just learning all the diagnosis That’s my concern for chat with Doc … how bad is it … I always think the worst and then it’s a bonus when it’s not. Will let you know what she says tomorrow Lindy 😊

We are all here with different causes for our liver problems, mine is viral from Hepatitis C, others are alcohol, Autoimmune, Fatty Liver, blood clots and some other rare problems, but we all share similar effects. Luckily tips and help is always available from others who kindly share their experiences. Autoimmune is where the body attacks itself, so that is something that happens but not because anything we have done to ourselves.

You are a part of the community now so you will always get replies 🙂

Others will post when they wake from their naps 😁 unfortunately naps is a side effect

Dave

Lindy65 profile image
Lindy65 in reply to DavyGravy

🙂 thank you Lindy

I’ve just been posting a few weeks since my ELF test in November. I’m just learning about the different diseases too. I’ve done a lot of reading online. Autoimmune hepatitis scares me because it’s incurable and requires medication and I don’t think it responds to diet etc unlike non -alcoholic fatty liver disease which I gather can be reversed by a healthy diet, weight loss, no alcohol and low salt and sugar especially if diagnosed early. Thats what I’m focusing on while I’m waiting for the investigations. I’ve paid to go private to find out quickly as I couldn’t cope with the anxiety. I lost my mum to liver disease when she was 61. She had no symptoms then was suddenly very ill and died 18 months later. I was worried the same was happening to me though at least I’ve had 10 extra years. Take care and keep in touch.

Lindy65 profile image
Lindy65 in reply to Corin1950

Ah right … in the same boat learning 👍 sorry to hear about your mum I can understand you worrying. Will update you tomorrow on my Fibro results 🤞Lindy

Sorry about your mum corin. Anxiety is just as bad if not worse as the disease. You have to fill your thoughts of something else via a distraction, it's not easy for me to say because I went through it..... Awful feeling especially when I had nobody else to talk to I didn't have this forum just Google. I'll never touch Google again for symptoms....🤔. Try watching some TV series'ssss or puzzles and jigsaws, I have done loads of jigsaws to avoid thinking (even in hospital, I did a fantastic one, took me all week, nurses were helping and guess what, 1 chuffin piece missing haha 😂)Stay positive Danny x

Thanks Danny. How annoying about the jigsaw. I’m generally quite good at keeping busy and distracting myself. I read a lot, listen to the radio and watch tv, go for a walk most days with friends and love cooking, so experimenting with lots of veggie food at the moment. It all helps.Take care

X

Morning corin, I've literally just looked at the site to see your post, another thing which is annoying (especially with the meds) is the sleep pattern, I've been up since half 3. I really hope that you sleep better 💗. Any chance of cooking for me? (Joking) I have my mum when needs be. Have a good day x

Hi CorinNo need to be "scared" of autoimmune hepatitis. OK , once you have it, it is likely to be with you for life, but is eminently treatable, usually with steroids, which seem scary to begin with but are generally tapered down until you are taking a very minor dose.

I was diagnosed in 2019 - it came completely out of the blue - and put on a very high dose of steroids which knocked the immediate and nasty symptoms on the head. Over the next two years with regular blood checks and ultrasound scans, I am now in remission, living a normal life and hoping to remain so.

Thanks for your reply. I just don’t like the idea of being on steroids with all the accompanying side effects but it’s good to know you are coping well and it is treatable. Take care.

Lindy65 profile image
Lindy65 in reply to Corin1950

Morning Corin … just had chat with doctor and it is Cirrhosis of the liver .. bit shocked at the moment as such a scary word! I have to have another normal scan before seeing the liver specialist . She thinks it is all related to my weight and if we can reduce this then that will help considerably . Once you have this do you have it for ever and can it get better ?

You must be shocked because the word cirrhosis does sound serious especially if you’re not sure what’s caused it. There are degrees of it and if you have your fibroscan results and post them in a new post there are people on here who can interpret them. What did the consultant think was the cause. Were you tested for AIH ( Autoimmune Hepatitis)? I know losing weight can help fatty liver and a healthy diet, no alcohol and low salt and sugar. Drinking coffee is good too. The Liver Trust has a helpline that you can ring and speak to a nurse for advice and there’s lots of information on diet, various liver conditions and tests on The Liver Trust website. Keep in touch and hope you get some answers x

Lindy65 profile image
Lindy65 in reply to Corin1950

I haven’t seen the consultant yet and I have asked for a copy of my report but my doc did complete blood works and there was no AIH . I hope the steroids are helping xx

I’m sure the report will give you more information and ask the consultant to explain any figures in it. Maybe put together a list of the questions you want to ask too so you don’t forget anything. Hope it all goes well x

Hello Lindy, welcome! I don't have any good answers for your question but just wanted to say hi. There are a ton of people on here that are a great source of information including Davy. I wish you the best and be sure to keep everyone posted.

Lindy65 profile image
Lindy65 in reply to pushthrough

Thank you 😊

Hi Lindy,. Wait until you see the consultant before you even think about cirrhosis. I don't think you have had a complete diagnosis (not from what I have read). Let the consultant shed some light on the condition. Try not to worry until you have a accurate in your hand (paperwork) diagnosis. People go mad over thinking. There are people who live a complete and normal life with cirrhosis and you have plenty of time to deal with whatever is thrown your way. I didn't know I had it for years (I may not be a great example, teehee 😃) I lived an active lifestyle with it (that eventually was my downfall) but what I'm trying to say is that YOU KNOW I didn't and when/if the treatment starts you will already be on the rd to victory. Hope this makes sense and not a load of nonsense hahahaha 🤣, smiling works wonders!Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Thank you …. It all just seems so surreal but thank you for your kind words and it all made sense 😜 It’s just an awful feeling , Sounds stupid but I was unsure what to eat today , not knowing if it was good or bad 🙄 I will be fine tomorrow … I normally am always smiling 😁 it’s just turned upside down today 😉 x

Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

We can help with your diet, everyone one goes for the Mediterranean diet. I been through most stages of cirrhosis,there are different cause's of the disease but the symptoms all roughly all the same. The diet changes with different stages. Dave has loads of tips as does big G (pushthrough) before you know it we will all be popping around to yours because I've recommended Apple crumble and custard teehee hahaha 😇. You will be fine, you couldn't wish for a better bunch. Try not to overthink...!Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Thank you Danny I will check out the Med diet 👍🏻 … bit puzzled as I have no symptoms or issues 🤔 what should I look out for x

Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

Good second morning Lindy, the thing is (I don't know if the others were the same) you don't actually go around looking for symptoms, it kind of creeps up on you slowly. When I think back and I wasn't diagnosed (the very first time) I had pins and needles in both my hands and feet (having a physical job, I took it as doing the job that long and getting older) also eyes going a little yellow, feeling sluggish, slower in general... you know thinking wise, odd twinges in my right side and twisting round to the right all of a sudden I just developed a sharp painful shock but never got this when twisting to the left.......... With the trade I'm in.... being on your knees working away in the same place for a hour or two, then having to reach around for a fitting or a tool was common. I can't see everyone having to do that... hahahaha 😂. Which also excluded the pins and needles in my feet (never used to get it) blood rushing back, what I did notice is it taking about 15, 20 minutes to ease off. Now it all makes sense.... like I keep saying everyone is different.....

I don't know if this helps Lindy...

Danny x

Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

Wait for the talk with your consultant before you send yourself insane looking for all the symptoms. Please don't become a hypochondriac, googling things, before you know it all your teeth will be falling out and you have 2 minutes starting now to live... Hahahaha 🤣🤣....big no, no ask Dave....I know it's a waiting game but have a chat about something else just until you get some concrete evidence 😉.

Chat away Lindy all the best

Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Lol … I know 😁 I have been checking my teeth every 5 mins 🤣 you have all been so reassuring and helpful . Don’t laugh at this one 😊 can you still eat chocolate or is that off the menu now 🥺 xx

Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

Hahahaha 🤣🤣🤣😆 brilliant... Google it hahahaha 🤣....

Until you know for sure you condition and I'm not a doctor I think you will be alright.

Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

🤫🤫🤫 I was allowed chocolate when I had end stages of decompensated cirrhosis. I'm still here smiling.😊Don't overdo it just incase 😜

Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Woo!woo! …Google say I can eat dark chocolate ( within reason ) not keen on dark chocolate but I’m sure I could get accustomed to it 😉😜xx

Hold on Lindy, I've just read your post from the beginning.... You are also diabetic. Chocolate is out of the window, I was talking about the liver.....

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Oh wow!!! Well done you 😳 I keep forgetting that 😱 I was only diagnosed December 2021 so keep forgetting ….. ah well that’s that then 🤓x

Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

Jeez aloo Lindy.... hahahaha 🤣 wow I'll have a word with the trust to keep an eye on you.... hahahaha 😂 xDanny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Hey .. I can still have dark chocolate 1oz but not on a regular basis …. So little is better than none 🤔 x

I have a brilliant dietitian infact she discharged me from her care last week. I will still see her every 2 weeks in clinic. She said if your body craves for something you can have it. She meant a proper craving not just a "ooh I fancy some chocolate" Only have it when you think you really need it. A small amount every now and then won't hurt (unless told otherwise 🤏). Healthy diet is king it's just staying to it....Right fun fact (my own experience fact) Right everytime I've been to the doctors, hospital, clinics been admitted to hospital, etc. I have never come across a massive or big overweight doctor, consultant, specialist or surgeon. They all are fit and healthy, (thin or perfect size for their height) normal people who are looking after us. It's practice what you preach. Now next time you are at hospital, have a look round you'll see. I think I've spent far too much bloody time in hospital another funny fact....... hahahaha 🤣.

Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Oh bless you …. Sounds as of you have been thought it 🥺 yes … a little bit of what you fancy does you good 😊 swimming was hard work today think my mind was else where 🤔xx

Try to keep your mind busy, I know that your mind wonders while swimming, running and walking....my consultant said to not swim because of covid so it's mainly walking for me. You will be fine, nothing don't worry about something that there is nothing to worry about. Meaning, you don't know the outcome yet.Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Thank you Danny 😊 I have attached my Fibro scan report … not a lot of information 🤔x

Fibro Scan Report
Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

I mean it does state you have non alcoholic fatty liver disease.... But a fibroscan can't be the only diagnosis for cirrhosis. Wait until you speak to the hepatologist and had an ultrasound. The KPa score is high for someone who doesn't drink. That can be totally reversed as long as there aren't underlying issues. Still don't worry about it. I dearnt show you mine.... haha 😂 Danny x

AyrshireK profile image
AyrshireK in reply to Lindy65

I agree with Danny, although it states you have NAFLD and a score suggestive of F4 it also states repeat bloods and refer on hepatology pathway.

The fibroscan alone can't 100% confirm cirrhosis because if bloods showed you had ongoing inflammation then fibroscan can be record a false high - it can't tell the difference between actual fibrosis and inflamed tissue.

Wait until you have your follow up tests and consultation before convincing yourself you are more ill than perhaps you are. Especially in light of having no obvious symptoms etc.

All the best,

Katie

Lindy65 profile image
Lindy65 in reply to AyrshireK

Thank you Katie … I just need to be patient and wait to see the specialist 👍🏻😊

AyrshireK profile image
AyrshireK in reply to Lindy65

In the interim you can see what you can do with regards to the NAFLD aspect of the diagnosis which as others have suggested the Mediterranean style diet can help with. The BLT website has details of the study into the benefits of this for NAFLD. britishlivertrust.org.uk/ea...

Katie

Lindy65 profile image
Lindy65 in reply to AyrshireK

Thank you . Do you know a good site for Mediterranean recipes ? 🤔

AyrshireK profile image
AyrshireK in reply to Lindy65

No but if you look up that link there is further link to Eating Well advice from BLT which details what entails a Mediterranean diet. britishlivertrust.org.uk/wp...

Research has shown that a Mediterranean-style diet can be particularly beneficial

for people with fatty liver disease. A Mediterranean diet varies by country and

region. However, it’s usually high in vegetables, fruits, legumes, nuts, beans, cereals,

grains, fish, and unsaturated fats such as olive oil. It typically includes a lower intake

of meat and dairy foods.

You can make your diet more ‘Mediterranean’ by:

• Choosing products made from vegetable and plant oils,

such as olive oil, rapeseed oil, vegetable oil

• Eating plenty of fruit and vegetables

• Including fish in your diet – at least twice weekly,

with one portion an oily fish

• Eating less meat

• Eating plenty of starchy foods, such as bread and pasta,

but be mindful of portion size.

Lindy65 profile image
Lindy65 in reply to AyrshireK

Thank you very much … off to check it out x

What Katie said, she has the ability to make everything sound eloquent and well explained. I'm rough and ready like a tradesman.Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

I think you both bring great insight and knowledge and have helped me calm down in my head 😁 the only drink I have is Xmas day and that’s a few Baileys on Ice…. Definitely my own Dancing on Ice 😜 x

Zukosmile07 profile image
Zukosmile07 in reply to Lindy65

Hahahaha, that is the best attitude and way to look at things, life really is too short for worry. Get some accurate evidence first then deal with whatever it is head on. Don't forget it maybe just a fatty liver which can be addressed...

Danny x

Lindy65 profile image
Lindy65 in reply to Zukosmile07

Trying to stay positive 👍🏻 Off to check out info Katie has given me x

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