101 questions? Any advice appreciated, symptoms? Appearance? Recovery? Overwhelmed.

[Veeru1093]

hi,

Firstly I understand this isn’t a place to seek medical advice so not expecting just looking for experience/ knowledge/ insight. Yes I am anxious and I’m working on it but my mind is in overdrive.

I am awaiting an ultrasound to see what’s going on with me, I have symptoms such as dark urine, red hot palms, rectal bleeding, constipation, RUQ, skin tags, lack of appetite/ libido, flatulence excessive burping, muscle cramps calves, red bloodshot eyes and major hair loss. Bloods show normal but these symptoms point to liver disease.

Stool colour normal, no spider angioma(thought I had them but they’re are just spider threads) no jaundice, nails normal.

Things ruled out: MS, hemmorhoids, colon cancer, IBD, diabetes, hpylori, celiac, LFT normal, full blood count normal, autoimmune factor normal. Lipid profile, creatinine, clotting factor normal.

Things picked up from tests that could indicate liver disease: creatinine slightly low, low zinc, ALP - Bile Acid & Bilirubin just above the range not multiple times on private test nhs tests were normal, ketones in urine though not fasting. Retested urine 2 weeks later and no ketones present.

I spoke to BLT nurse who advice hep B&C test but gp declined as I don’t come under the criteria for testing. So just have to wait for ultrasound.

The risk factors don’t apply to me as Ive never had alcohol, don’t smoke, no drugs, no long terms meds, barely ever taken pain killers, never taken birth control, no fizzy or energy drinks, no Covid jab, normal bmi, also I’m 29 years old.

Only cause in my head is bad diet high carbs/ sugar (would’ve expected diabetes or NAFLD first not straight liver disease symptoms) or the thing that super worries me is last year I had 5 x b12 injections over a period of two months and now I think what if they caused it? It was a professional hygienic place, used gloves and alcohol wipes but my mind is having irrational thoughts that maybe the vitamin caused liver injury. Maybe I’m hyper fixating on this because I can’t think of a cause for my liver issues or I’m just anxious that my own choices led to something potentially serious. Could hyperemesis I had in both my pregnancy be a cause? I know no one can say but just wondered if anyone had it caused by similar circumstances.

I’m sure Anyone reading this thinks I’m writing this for my own reassurance is probably right, I’m trying weigh out the facts and I know no one can say for certain till I have the ultrasound, but I am a mother so naturally worried seeing the dark urine every day or hands that switch from normal to red multiple times.

Questions, if anyone would be so kind to give an insight!

with liver disease would the urine stay dark regardless of how much water you drink? Does it return to normal once liver is healing or recovered? When did you see improvement?

Is my appetite coming back now that I’m doing Mediterranean diet and no added/artificial sugar a good sign of liver healing or pointing to type 2 diabetes developing?

I feel as though I don’t have an obvious cause it will be harder to recover liver or at least stop any progression because i don’t know the cause? (Guess they’ll look for cause if something comes up on ultrasound) I’ve changed diet and lifestyle, stopped all vitamins barely had any this year tbh, made sure to take no meds even for a cold.

Is ultrasound very accurate? If ultrasound is clear and I have clear bloods can I rest assured my liver is not the issue or should I still push for a fibroscan for certainty? Would they likely approve this?

my hair has always been my fave thing about me so losing that has been hard, I know in the grand scheme hair loss is minor but for me I do struggle, I’m not taking any vitamins atm as I don’t want any added pressure on liver for now till ultrasound then will consult with doc. Did anyone get their hair back once liver recovered or even with current liver disease What helped ?

thank you in advance for reading and taking time to respond, this will be my last post till ultrasound as I know I need the facts first, google and my mind will just have me going in circles..

I know many of you are diagnosed and struggling/ managing your illness so thank you for taking time to help others, your help is so valuable, I’ve read many posts on here which have helped ease my mind

[0range5520]

Hi, it may be worth pushing for an fibroscan, even for your own peace of mind as the worry is affecting you. ( you could mention this).

I do have compensated cirrhosis and have never had dark urine, but suspect others have. Mine was picked up after abnormal bloods when wanting HRT. So it was really the bloods that led to a Fibroscan. I’ve not got any risk factors so mine is down as cryptogenic on notes.

The US may be enough to give you some answers, but if your symptoms are not liver related I think it would be worth asking what else it could be. It’s a difficult time with the NHS at the moment and it’s hard to make your concerns heard, but persevere and keep asking questions. Good luck.

[NorbertGrubbins]

hello - I am sorry you are in such a difficult place with so much anxiety and so many questions. Lots of us recognise something similar - but that doesnt immediately help you of course. Sometimes it can be some small reassurance to know you aren’t alone

Hopefully your investigations will continue and you will get a diagnosis that will help you into treatment, whatever that might be. Good you are speaking to BLT people as part of that.

Can I also suggest that you try to tackle one thing that maybe is in your control (more or less) - take some time to reduce or limit your stress and anxiety in whatever way works for you - it won’t cure the underlying issues (and they need to be identified) - but you need to live while that is going on, so be kind to yourself. Sometimes this is easier said than done, I know, but what would you say to a friend or relative in a similar situation to yours?

Take care x

[Veeru1093 in reply to NorbertGrubbins]

yes definitely agree I do tell myself I need to continue to live as normal as possible and can’t put life on hold for this worry, I’m working on it but yes it’s easier said than done.

Thank you for taking the time to reply, I do feel seen here as I’m trying not to worry everyone around me so it’s nice getting replies here

[AIGal73]

Sharing my experience because I find similarities in your story.

When I was finally diagnosed with AIH I had dark urine for over a month, plus all my symptoms had become acute, liver enzymes over 65 times above upper normal level.. Nausea, fatigue, loss of appetite, itchiness, burping, pain/discomfort/ pressure under right rib, hair loss, etc. I had been to my family doctor for a few years describing symptoms that would be extreme at times. He seemed concerned that he had missed it, checked past labs and stated they had been normal to slightly elevated . The hepatologist said I had for years, but no more explanation of how or why and focused on treatment.

My conclusion is that I had for years, but my liver was still functioning and handling any attacks on it. I would make an appointment with doctor, but by the time I got the appointment and had any lab work done, I was feeling better and labs were back to normal. Think my doctor thought I was a hypochondriac. Once it became acute for so long, the labs showed it and I was physically affected constantly by it.

I think we know our bodies and wish doctors would understand that more.

[Veeru1093 in reply to AIGal73]

Thank you for your reply, and sorry to hear your journey was so long and difficult, honestly doctors do start looking at you like a hypochondriac and seem fed up sometimes 😭 but we know our bodies -and symptoms as we’re the ones living with them, they actually tested me for AIH my autoimmune factor was negative, which I’m relieved but also still worried about what the cause is then? praying it’s not too serious/chronic because I can’t imagine being this worried for the rest of my life.

[Readlots]

Hi, waiting for tests and results can be a worrying time. It’s great that alcohol isn’t a factor. I just want to reassure you that even if the ultrasound shows up anything with your liver it’s not the end of the world. I’m a Mum , although my kids are grown up now, so I understand your concern. I have multiple liver conditions but I’ve been working full time and able to raise 2 kids and look after older family members. I’ve recently gone to part time working by choice. Don’t panic and don’t Google. A lot of your symptoms could be stress related, and going through tests is stressful. Be gentle with yourself and try not to think too far ahead. One day at a time and recognise the positives. A gratitude journal or meditation might help you get through the waiting stage. I found yoga and meditation helped me but you’ll find your own coping mechanisms.

[Veeru1093 in reply to Readlots]

Thank you I’ve found a lot comfort in your reply, as I’m also a mother of 2 although mine are toddlers, it’s reassuring to know that despite your diagnosis you’re able to be there for others as that’s my main worry 😥 tbh I have had really stressful last two years hope in time I’ll heal and their is nothing serious underlying as I am worrier, i do need to work on my coping mechanisms because if I’m this panicked over potentially having liver disease can’t imagine what a diagnosis would do to me 😅

[Readlots in reply to Veeru1093]

I think it’s normal to panick but then you have to take yourself in hand. It’s weird but sometimes, once you know what you’re dealing with, you do just that - get on with it. Because really you have no choice. And if you’re someone who is always there for others, a diagnosis won’t change that. You’ll just do things a bit differently. Hang in there

[Smegmer]

The bloods you have had are unlikely to miss serious Liver disease. An Ultrasound doesnt show that much, a Fibroscan would be better. My urine went dark for a while when I had Gastritis 10 years back.

[Veeru1093 in reply to Smegmer]

Thanks for replying and I am Praying that’s the case!! I’ll try ask for fibroscan after ultrasound hopefully they’ll agree