Recently diagnosed with F3 fibrosis/cirrhosis. I do not yet have ascites, jaundice or esophageal bleeding, which I understand are the signs of decompensated liver. I do have extreme fatigue and weakness and dull pains in upper abdomen. I also have other weird pains everywhere. Pain in lower back, feet, stiff neck, burning in upper back, burning and numbness in right thigh, muscle cramps, occasional sharp pain in back of my head. Lots of joint pain. Seems like something always hurts. Besides pain I now also have heart palpitations, erratic blood pressure, and my eyeglass prescription seems to be too strong (just got them a few months ago).
Online searches indicate just about anything can be caused by cirrhosis. Am I just making myself crazy?
What are some of your symptoms that aren’t the usual ones associated with cirrhosis?
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Thanks Lj- I’m on 2 blood pressure medications, a statin for cholesterol, levothyroxine for low thyroid and metformin for type 2 diabetes. All of it is probably contributing to my symptoms and my diseased liver. I’m trying to lose weight and get off most of it. Seems like you are also having issues due to your medication. Hope things improve for you with the reduced dose.
Thanks for all the great food tips. Dr just changed me to a different statin and bp medication and cut the metformin dose in half. I’m gonna try to get off all meds though. It will be a major effort but worth it. It’s so easy to fix things with a pill but then you pay the price years later.
Hello! The liver does 500 or so jobs in the human body so not surprisingly many odd symptoms can crop up, and often no-one can give clear cut answers whether they're liver symptoms or not. However, the life threatening ones that you mention come with decompensated and are the ones we need to know about.The saying, "when you hear horses hooves, Try not to think Zebras" has been quoted. It's easy to worry that everything is to do with your Liver. The main thing at your stage is to give your Liver the best chance, show it the respect it deserves and give it as little to do as possible by eating healthily and watch what you put through it.
Yes, I have learned a lot now about the live and how it affects everything. Some of my symptoms I’ve had for years so I’m wondering how long I’ve had the liver damage and didn’t know it.
Hi. I have some of these symptoms and it's from taking levothyroxine. As I only have a mild fatty liver. Muscle cramps and pain and numbness and tingling, bloodpressure irregularities and eye problems can be from hypothyroidism. Have you had your levels checked recently? I would see if it could be that.
Thanks Peeke. Yes I’ve had thyroid blood work several times in the past few months because I was in the emergency department for heart symptoms. The weird thing is the numbers are all over the place. In February my TSH was .89 and in March 4.4 and in April 6.2 and May 3.4 and now back down to .95 so I have no idea what is happening. Maybe medication isn’t being processed if my liver isn’t functioning correctly.
Depending on where you are, I would recommend asking to see an endocrinologist. In the UK there is virtually no chance to get referred though unfortunately.
I have a liver issue and many many symptoms that I know are due to my liver....pain in joints, bowel cramps, heart symptoms and palpitations, breathing issues, weird and strange sensations in my head, peripheral neuropathy...and many more. I know that they are all due to my liver. It affects everything.
Sorry you’re going thru this too. It’s so weird to have everything go haywire and not know what it means. It’s really scary especially the heart stuff. I had to wear a heart monitor for 3 days and found out I have supraventricular tachycardia. So where did this come from? I have to think it’s liver related. Dr says it’s not.
They say the exact same to me. They say its probably not the liver. However I know with absolutely certainty it is.I also wore the heart monitor several times which picked up the supraventricular tachycardia...did yours go very high? Mine went to 170!
I also get headaches, horrible taste 8n my mouth and dry mouth and hairloss. Do you?
I don't have cirrhosis by the way I have something called Nodular Regenerative Hyperplasia which is damaged blood vessels and nodules throughout the liver ( without scarring).
Wow! Thanks for all your input. Sounds like we have a similar experience. My heart rate was high of 143 and low 53 on the monitor. I also have hair loss which I thought was thyroid related. And yes, headaches and dry mouth too. Learning so much here from everyone and realizing that all my symptoms are probably from my liver. I just wish there was something more I could do about it.
Just wanted to say "take a deep breath". If you take care of yourself, you are more likely to die with liver disease than from it. First, a question about where you are today: you mentioned that you have been diagnosed with F3/F4 cirrhosis. Fibrosis is divided into stages: F0-F1 little to zero fibrosis, F2, moderate, F3 advanced and F4 (cirrhosis). Once you have cirrhosis, it is also divided into stages (stage 1 cirrhosis, stage 2 and so on), so it can get a little confusing.
So, if you are F3, this means that you do not have cirrhosis--yet. Your liver has fibrosis, but it is not yet scarred, which is the cirrhosis. Many people mistakenly believe that any stage close to cirrhosis is about as bad as cirrhosis, but this is not true. Cirrhosis is a very different state. With cirrhosis, the body undergoes changes in your blood "hemodynamics" and many other critical physical changes (changes in your metabolism which is why a person with cirrhosis often loses weight involuntarily) which are distinct from any stage short of cirrhosis.
The good news about all of this is that you are at F3. You're not at F4, cirrhosis. The F3 stage is reversible. Some people (myself included and most doctors who follow the scientific studies) now know that even cirrhosis is at least partially reversible (or capable of being stabilized) in all but the worse cases, so long as you remove the cause of the injury to your liver.
All cases of liver disease are helped by improving your overall health. So, walk, drink plenty of water, eat plenty of vegetables and fibrous fruit (apples, etc), limit refined sugars and other carbs and (I believe) limit meat (unless your doctor advises you to eat meat) and manage stress to keep it at a minimum It will help you in your journey to start a practice of positive thinking and put your health, physical and mental, before anything else. A lot of good help is on this forum. Use the search tools. Best of luck to you. You're going to be fine!😊
Thank you so very much for your response and encouragement. I’m really confused about what is going on in my liver because the CT scan showed a nodular liver surface (which the doctor said in his report “likely cirrhosis”). Then I had the FibroTest which says .59 F3 fibrosis. Dr says they can’t tell the EXACT state of my liver without a biopsy, but that wouldn’t change anything or change their approach (which is for me to lose weight and eat healthier). I guess I’m confused because of the CT scan. I thought once your liver has nodules it means cirrhosis. Is that not the case?
Irregular surface can be described that way and does mean that there is something that has caused it to not be smooth. But, one thing I have learned is that cirrhosis may occur in one part of the liver and not in other areas. The problem is that almost all ways in which we can measure whether the liver is scarred are imperfect. Even biopsies, which are called the gold standard for determining the presence of cirrhosis, can only "sample" a tiny fraction of the liver, so they do not tell the whole story of what is going on with the liver. One of the most accurate tests is a magnetic resonance elastography, which looks at your entre liver and which, unlike a Fibroscan, does not vary in accuracy depending on the skills of the technician. Your doctor's approach is reasonable in saying that the treatment plan in your case wouldn't change, despite not having a biopsy because it really is better to assume the worse rather than hope for the best. That said, you should know that F4 cirrhosis is reversible partially (and sometimes significantly) since the liver, unlike other organs, has the remarkable ability to regenerate itself. Just stop injuring it, give it some time, and the liver will do most of the heavy work for you. Here on this forum, there have been so many stories of people who started out with cirrhosis and their livers rebounded. 👍
Are you on any blood pressure medication? If so may need to be adjusted if your liver isn’t working properly. Have you had any tests for your heart (echocardiogram or stress test) to see what’s going on? My doctor says my heart issues are from metabolic syndrome. And the metabolic syndrome causes the liver disease.
I'm not on any meds I try not to take anything because I think my liver is really struggling. I've had ecgs, echo with bubbles and heart structure was all OK so I know the liver is causing it without a shadow of a doubt. It's a bloodflow issue caused by the liver.
I totally agree with you. I believe it’s a blood flow issue too. I don’t think my doctor knows what he’s talking about regarding the liver disease not causing the heart problems. But how would I prove it? I don’t feel like I should be arguing with him about it.
Yes you are absolutely right. The doctor's won't listen they do not understand it at all...they look only for the obvious symptoms of cirrhosis. I've gad a lot of run ins with my doctors especially my hepatologist. They have said I'm anxious which I am not. I just feel very very ill andbi don't think it's normal at all to have all these unexplained symptoms. I'm like a skeleton now and can barely eat because they have let me become so ill.
I’m so sorry you’re feeling so poorly. I totally understand as I feel lousy most of the time. I think the problem with me is that I feel so much worse than my tests indicate. All of my bloodwork is normal except for slightly elevated AST/ALT (which I have for years) and GGT and something called alpha-2 macroglobulin. The nodular liver on the CT scan was found while looking for a kidney stone. I get the feeling most doctors don’t have time to deal with all our problems and complaints and only respond when there’s a crisis.
Exactly the same for me. My bloods are not indicating how ill I am but if its a vascular issue it will not show on tests!! I don't understand why the doctors don't know this when even I do!!You need a biopsy if possible. My diagnosis of Nodular Regenerative Hyperplasia was only confirmed through this
May I ask you to post your symptoms especially related to the veins and circulation?( if you prefer you can answer to me in private chat). I ask because I (40M) have some issues with the veins and transient NAFLD( one time appears another time does not on the US or appears only partially). I have also some elevated the Vitamin A 79(norm <= 70) serum because I took the ADEK supplements for a while sometimes overdosing. I change a lot my eating and I try to do more regular walking/ jogging. Thank for your answer in advance.
I have breathing and heart issues caused by the circulation from the liver and very prominent bulging veins in my hands and arms. I also have severe weight loss.Nodular Regenerative Hyperplasia is a vascular disease by the way..it is when the vessels within the liver are damaged
Your doctor has investigated via ECG and has made the diagnosis of a rhythm disturbance. This is caused by an issue with the electrical condition of the heart.
Presumably, your doctor has checked bloods particularly U&E’s, LFT’s. This will give a clear indication whether or not you have an imbalance which needs corrected.
Basically, I wouldn’t dismiss your doctor’s diagnosis.
You are on the right track losing weight and getting support from your doctor for your symptoms.
The Liver is a marvellous organ, keep treating it with respect and you will reap the benefits
I’m sure you are right that I’ve read too much and probably don’t understand everything. That’s why I asked if anyone else with cirrhosis had symptoms other than the usual ones the doctors look for. Just trying to learn from real people dealing with this disease because everything I read is so confusing and sometimes contradictory. Sorry if it came across as challenging anyone’s knowledge.
Did you have a regular ultrasound or the Fibroscan? Do you have any fibrosis or just fatty liver? I had a CT for what I thought was a kidney stone but it showed nodular liver surface. Then I had the FibroTest blood test which says F3 (advanced) fibrosis.
Do you have osteoarthritis? My CT also showed degenerative process in lumbar spine. I get the dry mouth too. Is that from dehydration? Some days I pee a lot. I think it’s because I’m starting to retain fluid but my kidneys are still able to get rid of it. Or maybe I’m just going a little nuts.
FibroTest (FibroScore, ActiScore) is a blood test that analyzes 6 things and comes up with a fibrosis estimate. It’s supposedly equivalent to a FibroScan. My Dr used this since we don’t have a fibroscan machine at our hospital. My score is .59 which is equivalent to F3 on the other scans.
Yes I do need a Fibroscan. I’ll have to travel several hours to get one as no one has the equipment in my area. But I will do it so that I know exactly what I’m dealing with. Trying to get endoscopy first. Just waiting for clearance from my cardiologist.
Yes chest pain, dizziness, high blood pressure, palpitations, fast heart rate, irregular heartbeat. You name it. I ended up in emergency department twice. Had cardiac workup in hospital. No structural heart issues, no blockages found. I was sent home with different meds. Weeks later had major palpitations and was put on heart monitor which showed supraventricular tachycardia.
Try to get them to put you on a heart monitor for several days. My echocardiogram did not show the tachycardia. It’s only a 5 minute scan. Sending you best wishes for a good outcome. You are in a much better position now to fix this before it gets worse.
I think most tests can have false positive and negative results. My Fib-4 comes out normal because my AST/ALT are only slightly elevated and my platelet count is still normal. And yes I think all your symptoms could be just from fatty liver. If there’s enough fat in there to block the normal blood flow then you could have symptoms. Please don’t panic but please don’t drop the ball either. Follow up with your doctors and get whatever tests you need. I wish I had known more 10 years ago but I didn’t know how serious fatty liver could be.
I think with all aspects of liver disease there can be symptoms for some and for others they didn't even know they had liver disease until it was diagnosed!The important thing is to try and get yourself healthier by eating the right foods and getting treated for the cause!
If the underlying cause can be treated for most their liver function can improve significantly!
Obviously if you have decompensated cirrhosis then that comes with many problems that need intervention but for compensated cirrhosis you can live a
Long life if you look after yourself!
It's good not to dwell on the problems that might or might not even be liver related and just get on with living a healthy as possible lifestyle.
I don't wish to be rude but I think you need to check the science. Lemon juice is acetic ACID the opposite of alkaline. Alkaline solutions do not denature unless an acid is added to them . Many mineral waters that are mildly alkaline have high sodiun levels and are not good for the liver.
I think liver diesese is a cure for bad eyes ! Same here I have stage 4 , had ascites , jaundice, out of hospital lat year but doing well as I'm now asymptomatic. But ... My eyes are fantastic, I only had a reasonable prescription but I find I don't need them glasses now, I can also wear normal not prescription glasses but what's noticeably is my night version is much much better... strange hey !!! There's a positive lol
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