Worried about itching and fatigue

[Walt46]

Hi All,

Have read a bit on this site and the support seams great.

I'm very worried I have an issue with my liver that's gone to far. The last 5 days I have had extreme Itching head to toe and keeps me awake at night. There is no rash and it's everywhere, inside nose, ear canal etc.

I did have a Live function test a few months ago which came back fine, but now looking into things, I can see that it means nothing and that people with liver problems can still have normal results which was disappointing to see.

In addition to this, I am very fatigue. I drank heavily from 20 to 40 years of age, and have only stopped drinking a year ago, just because I didn't feel I wanted it anymore, no other reason.

I also remember having a scan on my pancreas at 35 which they said looked ok but couldn't quite see it. She did make a passing comment saying you have a bit of a fatty liver which I thought nothing of, but can now see that that's pretty serious within itself, and if I knew then what I knew now then I would have certainly changed my lifestyle.

Any advise would be great.

Thanks,

Andy

[Laura009]

Hi Walt.

It is possible to reverse fatty liver by continuing to stay of alcohol permanently, adopt a healthy diet which means avoiding foods containing high levels of fat and sugar and dont add sugar or salt to your meals or drinks. Eat plenty of fresh fruit and vegetables, fish and lean white meats. Regular daily exercise is also very important. Keep that up and your liver will regenerate itself within months depending on how fatty it is. Your symptoms too will subside. But please don't be tempted to go back to old habits as next time your liver may not be so forgiving and beyond fatty liver, major problems can occur.

Good luck

Have a good day. Laura

[Walt46 in reply to Laura009]

Hi Laura, thank you for you response.

My worry is the last 6 weeks prior to COVID-19, I had been going to the gym 5 days a week and eating very healthy for probably the first time in my life so I don't feel like I can improve on anything which it what scares me as I should be good now?

The itching is so intense all over and has been with me for 5 days now. From what I can see, itching is at an advanced stage and usually caused by cirrhosis rather than a fatty liver so it looks like it has gone to far already? Feel like I'm going to wake up yellow any day.

Many thanks

Andy

[Liberty82 in reply to Walt46]

Hi Andy, I too have had the itch, an itch which is under the skin and in every part of my body as you describe and only itching at night with nothing to relieve it. This was alongside other symptoms (cramping limbs, oily stools, abnormal sweating, pain in the upper right quadrant and around my back). I have been for a few years convinced that my liver issues were very serious but I've had 2 fibroscans (5.4kpa and 3.3kpa, which would put me in normal category) 2 normal ultrasounds 5 sets of LFTs over the 2.5 years that these symptoms began (all normal) and more recently an ELF test (Enhanced liver fibrosis test) this was the only one that didn't come back as normal but my result was 7.83 and anything under 7.7 is normal so it was just borderline. Ive been on and off these pages for years, I've spoken to doctors and although my symptoms haven't completely disappeared they have reduced. My symptoms still scare me at times but speaking to others on here who have had normal results and the itching I've to come to realise that even with normal tests results your liver can have a bit of a grumble. If you've drank for 20 years it's probably has had a bit of a battering but the itching in advanced liver disease is caused by abnormal levels of bilbruim and since your LFT has come back as normal then this is not the cause of yours. However, you can still have the same kind of itch that has been experienced by myself and lots of other people on here who's results are normal too but without advanced liver disease. I know I'm rambling on a bit but what I'm trying to say is I know how it feels to be worried about this and it'd taken me a lot of time to accept I don't have advanced liver disease but I still have moments of panic when my symptoms play up. I have driven my husband mad with it for years, but I'm not mad and my symptoms are real, I just don't have the answers and neither do the doctors. Is your itching at night and are you still continuing with healthy eating?

[Walt46 in reply to Liberty82]

Hey, thanks for getting in touch Liberty.

I have had a nightly monthly itch that used to go away by the time I woke up. I came on 4 nights ago and it handy shifted and has only intensified- I have it 24-7 it is driving me up the bend.

I have also noticed that my palms are red and mottled which is not an egging I have thought about before.

I’m glad all your tests have come back good, and the fact you have had a few sounds like there is no mistake made for that reassurance. however, I know if you still have the symptoms it always puts that dojnt in your mind!

Yes, oily stools too so not nice. I also have massive head fog and confusion last few months.

I hope that you improve and that the itching goes. I have been eating healthy but certainly not as healthy as I had been.

I just think I’ll have to get a CT scan done with bloods.

Let me know how you get on

[Walt46 in reply to Walt46]

Egging?! Uh, I mean symptom

[davianne in reply to Walt46]

Hi Andy,

Can I ask, have you had a fibroscan?

David

[Walt46 in reply to davianne]

Hi David, I haven’t but I think that’s my next step. I may go private as I could be waiting sometime for one!

[davianne in reply to Walt46]

Hi Andy,

A fibroscan would show how much of your liver is damaged, and also if it is not, and just a fatty liver. I don't want to cause you unnecessary worry, but I only asked because you said you have brain fog and confusion, which could be Hepatic Encephalopathy, and oily stools... both of which are symptoms of cirrhosis.

Take care,

David

[Walt46 in reply to davianne]

Hi David, My brain fog was so bad that it gave me a bit of blurred vision and I lost 70% of hearing in one ear. I had 2 recent MRI scans of my head and they said they both came back clear. Well, they said this was one white spec but they were not concerned. I'm still under investigation for this.

Would a MRI rule out Hepatic Encephalopathy?

[davianne in reply to Walt46]

Hi Andy, no, it wouldn't I'm afraid. HE is caused by a damaged liver, not being able to process ammonia, which then travels to the brain in the blood, causing the confusion. I have HE, but I have not had blurred vision with mine. I just have episodes of forgetting topics in mid conversation, confusion as to where I am or going to, and on occasion unsteadiness when walking.

I had a brain scan to try and find the reason for blackouts I had at the start of my cirrhosis journey, but they came back clear as well.

David

[Walt46 in reply to davianne]

Thanks David and sorry to her you suffer with those symptoms, it sounds awful. I think I just need to have a Fibroscan and take it from there. I definitely lose where I am mid conversation and if someone is talking to me I completely lose what they are talking about halfway through. I had an X-ray a month ago and bloods done and that all came back fine. From what I read, bloods count for nothing these days.

[davianne in reply to Walt46]

Hi Andy, your right about bloods. My journey started 4 years ago, and stopped drinking immediately. My cirrhosis was decompensated then and my liver was really struggling to perform it's functions. My bloods then were frighteningly high, I was a total mess. The after 6 months of looking after my liver, my bloods were nearly normal, and today are mostly within range, except I still have very low platelets, so a small graze, and I bleed

for a long while my blood is very slow to clot. I also get huge bruises under the skin from the slightest knock. You will know a lot more when you have a fibroscan.

David

[Walt46 in reply to davianne]

It really sounds like I have it which is very distressing. I’m really worried that I have not drank for a few months, eaten healthy but my symptoms have got worse. Does this mean it’s got too far for any hope and could possibly be stage 4?

[davianne in reply to Walt46]

Hi Andy,

Please don't panic, wait 'till you get a fibroscan. I was diagnosed after mine, although my symptoms at the time were very bad, so it all happened. I have F4 cirrhosis, but now compensated, and I still have a lot of the symptoms of cirrhosis.They are not as severe as they were when diagnosed, and did take at least 6 months to settle down, and it's certainly not a death sentence. I have lasted 4 years now with a healthy lifestyle, and plan to last many more.....I am 72 years old just now, so no spring chicken😊😊😊 I am living proof that cirrhosis can be managed, and that a near normal life can still be enjoyed.

David

[Walt46 in reply to davianne]

Thanks David. Such a sleepless night. So glad to hear that you are doing so well, it gives all hope! I have baby on the way and am only 39 so I have a lot of guilt hanging over me, I even find it hard to look at my wife and son because I feel like I'm going to ruin their lives. I think it will be sometime before I get a Fibroscan, due to my location. My itchiness has dropped by 70% today which is nice as it was making me a little crazy. Thinking about the last month, I have had about 4 paracetamol nearly everyday for an annoying soar throat I couldn't shake. I wonder if that's what's been doing the recent damage. Hmmm. Anyway, Stools have been very pale and loose though, worse than ever sadly. In someways, I wish I had been drinking the last few months so I could put blame on it but I don't feel like I can improve on anything else which I guess is my biggest worry.

Anyway, thanks again for staying in touch. I'm really glad to hear you are doing so well and are chirpy!

[davianne in reply to Walt46]

Andy, you shouldn't be on a guilt trip. I was only a moderate drinker, but over a long time. Some people are genetically susceptible to having cirrhosis. I have friends who drink a lot more than I ever did, and their livers are fine......just the luck of the draw I guess.

Just ask away when you want support or answers,

Stay Safe,

David

[Liberty82 in reply to Walt46]

Walt I can't take paracetamol either, my liver hates it, I overheat like constant hot flushes and the pain under my ribs really intensifies! So I wouldn't be surprised if this could be the source of your itching. I haven't touched paracetamol in over a year, I take ibuprofen or codeine based pain killers if I need them. My stools are still oily and nobody has ever explained to me why this could possibly be. As I said I still get symptoms and even though every test I could possibly get except a biopsy has come back clear when something triggers a symptom I think I've seen the back of a cold fear washes over me and I become frightened again. I'm 38 so we are around the same age and I think if you continue on with a healthy life style you can reverse any damage. I was more than convinced I had cirrhosis, nobody could have told me differently, but although I believe I have some damage I'm pretty sure it isn't cirrhosis. Most people's blood tests will even be ever so slightly off if it's cirrhosis, its not unheard of for them to be completely normal but it is rare for advanced liver disease. If you are in the UK I'd recommend phoning the british liver trust, they are brilliant and Trust1 on these pages (Rebecca) is absolutely fantastic, but they are all so helpful and they have helped me rationalise my fears. I felt the same way you do about my husband and thinking he was going to have to watch me die very young with cirrhosis. I'm glad your itching has somewhat subsided. Hopefully if you stay away from the paracetamol it'll return to normal. I honestly believe that you don't have cirrhosis but it's much more likely you like me have some damage that is reversible. Stay safe 😁

[Hidden in reply to Liberty82]

Thanks for the lovely words about us...just a reminder, if you have liver issues, to be careful taking any pain medications without fully discussing it with your own doctors first. They will assess what is safe and appropriate to take.

Best wishes.

[Liberty82 in reply to davianne]

Hi David, people keep telling me oily stools aren't a symptom of cirrhosis but I've read several things on line that contradict that. Did you find oily stools were a problem for you? Mine have got progressively worse over the past 3 years. All test results are normal. Thanks

[davianne in reply to Liberty82]

Hi Liberty,

I would describe my stools when diagnosed as Tarry, a bit like Marmite, only thicker and not so consistent in texture......sorry Marmite lovers 😊

Mine are OK now, but with IBS and diverticulitis, I never know what's around the corner 🤞🤞🙏🙏

David

[Owlie in reply to Walt46]

Hiya, thought I would jump in here....I have fatty liver and mine is reversing however my consultant told me it could take 2 years to fully reverse. You have to keep up the healthy lifestyle, your bloods will start showing improvements but Rome wasn’t built in a day. Keep going and things will improve well done!

[Pussycat65]

I have Non Alcoholic Liver cirrhosis and I suffer with itching all over also. I recently had a phone consultation with my specialist and she said that being Aneamic can cause itching. She sent me for a blood test and awaiting results!

[Walt46]

Hope everyone is well.

Just an update on my situation. I stopped itching for 1 day last week but it then came back in full force for a few days, but then, the itching turned to pins and needles which was worse than the itching??

I called the doctor at this point and I have had bloods done which come back today but in the meantime the pins and needles have stopped.

I did buy some herbal products ( not sure if I’m allowwd to name them on here) but since using them for 2 weeks, that horrible bloating I had decreased and my stools are a normal colour ( consistency still not right but better for sure) and I have been sleeping better. I’m going to wait a few weeks before I recommend them to anyone as it could all be coincidence but do feel like it’s the first herbal remedy that’s actually worked for me.

Finally, I have had a lot of muscle spasms in my arms and looking up these new symptoms, I see itching and spasms could be MS but who knows.

Thanks

[davianne in reply to Walt46]

Hi Andy,

Be very careful with herbal remedies, as some of them can be harmful to a suffering liver. I only take meds that are prescribed, and deemed safe for my liver, which can be a contentious subject, even amongst doctors.

David

[Walt46 in reply to davianne]

Hi, thank you for this. Hmmm, that has me worried so I’ll stop at once! It was the top rated liver tablets on Amazon , where people reported their results had improved drastically from having a fatty liver so I game me hope. Been good for a couple of weeks despite itching coming and going and then a rotten day yesterday - better today again. The one thing they have definitely given me which I can’t question is my energy levels are good. I’ll lay off then until I see a consultant.

Thanks a million

[davianne in reply to Walt46]

Hi Andy, You just have to run it past your Doctor first. One of the favourite ones is Milk Thistle, which is regarded by many as not good for our struggling livers.

David

[Walt46]

Bloods came back fine but my itching is back in full force and feeling really bloated - I thought that might happen once I wrote things were looking up!

Doctor wasn’t worried and almost palmed me off until she saw I had a fatty liver a couple of years ago. Attitude changed and she was very concerned. Making an appoiment for a liver specialist now :/

Diet and excersise has been brill last fe wmknths so itvworries me that I can’t make positive changes and it may be at an advanced stage.

[Liberty82 in reply to Walt46]

I'm in the same boat Walt, a lot of our symptoms sound very similar but I've had every test going. I go back and forth and talk myself out of thinking I have severe liver damage but then symptoms will get worse and I'm back really scared. These past few days I've been more worried but it's difficult to get any referrals when all your tests have been normal. I'm asking for a private referral to a hepatoligist as soon as its possible, I can't really afford to go private but I've no other option.

Keep a food diary and see if there are any triggers for the bloating and itching. Even one chip and straight away the pain in my back returns. Also most pain meds give me awful symptoms, one tablet will give me symptoms for a week. Don't take anything herbal or any other kind of meds unless you're prescribed them, no milk thistle nothing, it's not recommended by the BLT. I'm sorry you're suffering with the itch, when I had it it was exactly how you're describing it. I'm on pregabalin and I felt that helped with the itch because it isn't really a topical issue, it's inside, under the skin. Cream wouldn't have worked for me because every inch of my body itched like you, even in my nose, ears etc. I haven't had the itch for over a year, it was quite severe when I'd had alcohol which I don't take at all now. Sorry I can't advise any more on the itch I know it's absolutely horrendous. Is it just at night you're itching?

[Walt46 in reply to Liberty82]

Hi Liberty, Thank you for your response it’s really helpful! Yes we sound very similar indeed! I’m itching day and night it drives me insane, and like you it is all over and ESPECIALLY in my nose and ears.

I’m trying to remain positive, but when then a symptom will hit me and I’m back to square one. I’m almost accepting that I have major liver disease and thibk how I’m going to deal with a liver transplant! Crazy, but that’s my mindset right now.

I have greasy stools most of the time, and loose and some times a bit like clay which I know which is a really bad sign. That is the symptom that worries me the most- I’m scared to go to the toilet as dread what I’m going to see.

The only thing I feel that going well is I have no shortness of breath. Bloods came back fine but that’s not enough to satisfy me. I think until I have a Fibroscan, my mind will not be put as ease. Like you, can’t afford to go private but I’m thinking if I pay £350 and I haven’t got anything wrong then I’d happily pay £350 for the all clear, and then if there is something wrong, then my doesn’t matter but my road to recovery does.

Sorry your going through all of this. From what you have said I actually think you are going to be just fine👍

[Liberty82 in reply to Walt46]

Are symptoms are are so similar, 2 weeks ago I had to see my GP because I was getting dizziness and pins and needles, dead legs like they were in cement. I've also had cramps and twitching but in recent weeks they seemed to have calmed down. I'm dizzy most days though and dead legs. I had a FBC and it all apparently came back normal. I'm going to try and get the platelets results in the morning to see if they are in the low side. Sorry you're suffering, I feel your pain ☹️