Maybe if you read some posts of me before I sometimes doubted my diagnose for Liver Cirrhoses. The diagnose was over 2 years ago, but still things are just not adding up for me. Yesterday I watched a video again, where they give 14 signs of liver cirrhosis. I have none of them. None. No red palms, no spots, no spider nivea, no clubbing nails, no jaundice, etcetc. What are my concrete complaints now: I feel my spleen, I sometimes feel my liver, and I doubt about my ascites. Sometimes. Its never extremely there, maybe some discomfort sometimes, but you can have the same after a heavy meal. And then about the Spleen, yes I feel it, so it must be enlarged, but it would mean that my INR is higher then average because of the blood platelets thing. It is not. Last time I checked my INR was 1.1. This is a normal level. They even use your INR for Child Pugh and MELD - scores.
Concrete question if somebody can give me some more insight. Can you have Cirrhosis with a normal INR?
And if so? Do maybe some of you agree that it's not so weird I am doubting my diagnose?
I know these are questions for a doctor but he could not answer this questions. He is a specialist, he had no answers for this questions. I thought I would give it a try here. Lots of people, lots of knowledge.
Would be great if somebody could help me out just a little bit.
Thanks and have a great day dear people.
Jimmy!
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Jimmy777
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Hi Jimmy, you've now posted a number of times querying your diagnsosis of cirrhosis and portal hypertension. You've never actually discussed HOW they came to this diagnosis based on the almost total absence of symptoms.What symptoms did you have or tests that established the diagnosis?
Hi Katie, I had some dull liver pain, and felt my spleen, went to GP. He sent me to hospital to my specialist. Did some bloodwork: High GGT, ALAT, ASAT. Told him about feeling bloated. He said I must have portal hypertension. Which ment: PH = liver cirrhosis (I was very surprised). Then he gave me furosemide to get rid of fluids and carvedelol for bleeding varices (never banded, but also didnt bleed anymore almost for 2 years now). Before once in a while had little amount of blood coming out of my behind. That's kind of what happened. Now we see each other every half year. GGT, ALAT and ASAT a somewhat lower. Thats kind of it!
Have you never had a scan to actually look at the liver? Seems a strange route to a confirmed diagnosis of cirrhosis.
Meds for varices but have you ever had an endoscopy to actually see that you have them?
High GGT, ALT, AST all point to an inflamed liver but not necessarily cirrhosis.
Intemittent blood from your back passage could be Piles (haemorrhoids) or a simple rectal tear - again did you ever had a colonscopy to check your rear end.
I wanted to add that but I thought reply would get too long. No scan, no biopsy, no banding, no endoscopy... no Colonscopy. His conclusion was: big liver, big spleen, bloated, so portal hypertension. And portal hypertension means cirrhosis. So no, I never had that..
If you haven't had any scans or other tests then they can't tell that you've got varices, portal hypertension or cirrhosis. They can't even tell if you've got an abnormally large liver or spleen by touch alone - you might just have a large liver for your size.
In cirrhosis (certainly in my hubbies case) liver quite often becomes smaller, shrivelled and shrunken.
I don't know what kind of specialist you've seen but I would deduce that you have not had adequate tests to come up with a diagnosis of cirrhosis with portal hypertension.
Even though my hubby went to hospital vomitting blood and bright yellow with totally deranged LFT's - he still underwent scans, endoscopy, liver biopsy and more to confirm his diagnosis. In UK anyone diagnosed with cirrhosis MUST have 6 monthly scans to check the liver for any signs of lumps and bumps and for fluid, portal veinous flow etc.
You have had a spell of raised liver markers (liver inflammation/hepatitis) but in no way have you had sufficient investigations to PROVE such a serious diagnosis of cirrhosis.
I agree with you . I have endoscopy every 4 week & banding. Following a near fatal bleed . I have portol hypertension . Told me that I have chirrosis . Then I didn't then I did ... I've had more CT , ultra sound then yet another fibro . To be told again thar I Do Not have it !
I was diagnosed with chronic pancreatitis 4 year ago with blocked bike duct and stones in my pancreas ! Never been treated all of this is complications from my CP !
I have portol hypertension . I do not have Chirrosis .l I had a near fatal bleed last year I've had banding every 4 week since ! I was diagnosed with chronic pancreatotis 4 year ago .
Loads of implications. This is where my portol hypertension comes in .
This shows up on a Scan and you would definatley need a endoscopy to determine if you have varacoes !
My specialist knew that I had of this following regular CT scams. He didn't do a endoscopy urgently or give me medication to slow down my flow . I almost died
It sounds like your Dr has guessed everything and treated you . How ?
Thanks Katie, and thats one of the big reasons why Im doubtfull about my diagnose. It is a shame why nobody can tell me and give me real prove. Or in this case another weird thing: the normal INR and the enlarged spleen? Like I told you, it doesnt add up. But thanks anyway. My specialist says it is like this and this. And that's it.
The size of the spleen is directly connected with platelets (enlarged spleen -> low platelets). And level of platelets is one of the clotting factor also. The INR level tells about other clotting factors and about liver condition (and for example about vitamin K deficiency).
I'm sorry. English isn't my native tongue. I understand the platelets thing... But you are also saying that INR level does say something of liver condition?? Do I understand this correctly? So this means I can have low platelets (which is not good) but my liver can be in reasonable condition?
If you do not have vitamin K deficiency or some other blood clot disease prolonged PT (increased INR) genarally indicates severe liver damage F3-F4. It is one of the test only so of course you cannot asset your liver status only because of this. Please ask your hepatologist about all your doubts.
"INR is related to the prothrombin time (PT). If there is serious liver disease and cirrhosis, the liver may not produce the proper amount of proteins and then the blood is not able to clot as it should. When your provider is evaluating the function of your liver, a high INR usually means that the liver is not working as well as it could because it is not making the blood clot normally."
Unless your specialist has x-ray eyes he can't confirm that you have cirrhosis or portal hypertension. Is he actually a liver specialist (hepatologist)?
Can you try and get a referral to another doctor to get tests and proper confirmation - what about a Fibroscan or Enhanced Liver Fibrosis Test (ELF test / blood test).
I wouldnt' be happy either as you have nothing that points to advanced liver disease but obviously something has been amiss in the past with the deranged bloods.
Thats exactly what I'm saying, thank you. He is a liver specialist. I tried in the beginning very hard to get myself another Dr. or second opinion. But these MLD doctors (thats how they are called in the Netherlands, are extremely rare), so that wasn't so easy. Then Covid came and even people with all kind of cancers or other huge illnesses had to wait for treatment. So I wasn't properly guided in general the last two years. Very bad luck. And of course some weird choices being made by policymakers concerning health care. It was Covid first. If you had other stuff going on, you (in general) had to wait. Now Covid numbers are finally going down, lets hope there is some more attention to the rest of people who need healthcare.
I would change specialist , well I have , I have a enlarged splien I have chronic pancreatitis. I have portol hypertension I almost died last year with a massive bleed. In hospital 9 days had acities was told chirrosis !
Many tests later I don't have chirrosis . My portol hypertension is a complications of my CP .. I don't get what you mean by . You can feel your liver & your splien ?
I looked at your previous post, and you stated before that your INR was 1.5 which is high, usually when INR is that high your platelets are low. Most people with advanced liver disease have low platelets, about(85%). I see now that your INR is in range, and you were a previous drinker, there are many people on FB on the liver sites that stopped drinking and their INR is in range,just meaning their blood is clotting, but some still have low platelets. You also stated that you had blood in your stool, was this black stool or bright red stool? As, Katie stated, sometimes blood can be due to hemorrhoids (usually bright red). The color is very important when in the stool. I think you need to have more testing (scans).
Thanks for your reply! Yes, my INR got lower over time. Indeed in range now. Blood in stool seems also to be history, but you bring up an interesting point. The blood coming out of me always was bright, not dark. Of course I understand dark is worse then bright, but does it also mean that bright blood is not connected to a varices bleed then? Thank you Sophia!
morning jimmy, i am in more or less the same situation as you. was diagnosed with portal hypertension, my liver function bloods were raised, didn't really understand what that all meant, then few months later had a fibrescan which showed i had advanced cirrhosis which i received in a letter which was most upsetting at the time, couldn't get to see consultant due to covid,i also dont get any symptoms and have been told my liver is functioning fine, still waiting for biopsy i just hope you get . and it has been going on now for nearly 2 years. i just hope you get some answers,
Thx Doechloe, im not glad for you at all, but its pleasant to see that im not the only one who had been treated very poorly (especcially because of Covid). I already regretted my question yesterday because I had the feeling that i had to justify myself towards some people for my situation. Good luck with your journey!
Jimmy, if that's me you felt you had to justify yourself to then that was not my angle at all.
I am entirely on your side and yes you have been treated poorly by your medical team which is what I was getting at in all my replies.
Your doctors haven't done nearly enough investigations to plump for a diagnosis of cirrhosis and portal hypertension - they can't say you have it for sure without proper tests (which you haven't had).
It's possible to get non-cirrhotic portal hypertension but again you haven't had the appropriate tests to see if this is even the case.
Your doctor can't just say you have cirrhosis with P/H without any testing and you can't diagnose p/h, varices or even ascites based on a set of blood tests.
I presented two years ago with ascites after 10 years of heavy drinking. Decompensated liver disease. Had the guild drained once, off water tablets and it never came back,thankfully. I’m on a beta blocker,no varcies,thankfully. I lost 4 st initially and I’m Now back to weight including muscle mass. My bloods took 10 months to normalise and I’ve been alcohol free for 1yr 10 months. Consultant said he might do a Fibroscan in the distant future for academic purposes?! Speed is normal is size now,platelets going up..95,125 and last bloods was 135. Albuium 43 INR 1.0. My only symptom is red palms. I was told I caught it in time,so I’ve been given another chance.
Wow Dean, that is a hopefull and uplifting story. You not only did great, but it seems you beat your decompensated state, and even more!? Thats amazing, truly great. You must be feeling over the moon? And never cravings for alcohol anymore?
Thank you! In answer to the alcohol question,no. Not anymore. I have worked very hard and still do in that front. I had to go back to the wound(childhood trauma) and begin my healing. I had to get to the core of what I was escaping from. I had to address my belief systems,the emotional baggage that that carried. My early exposure to alcohol,societal conditioning,my coping mechanisms. I am now becoming the person I was meant to be. I was kidnapped by alcohol. I couldn’t regulate my emotions as a child. My mother wasn’t there for my survival needs,I took my first drink and my anxieties drifted away and I felt safe. I never felt safe growing up (long story). So I had a life long coping mechanism till it took me to the brink of death . But through my work, I know my freedom is within. I can honestly tell you 💯,Alcohol for me is nothing but an illusion. I’m beginning my vocation to help others now. To find the gift of their best lives.
Having cirrhosis with a liver that is still functioning reasonably OK, so still in the compensated stage, may not manifest with a raised INR. Nor would some of the other tests of synthetic liver function, or blood counts, be out of range (e.g. albumin, sodium, platelets, heamaglobin etc).
Thats not to say you don't have cirrhosis. It just means despite any cirrhosis your liver is still coping pretty well. Or, certainly, well enough to meet your body's general day to day needs.
From personal experience my INR was never particularly high. In the main it was around 1.1 with the odd minor increase from time to time.
Again, its the same with all liver disease issues. Its always difficult to judge a diagnosis based on 1 finding. Its more about that bigger picture. Despite having a reasonable good INR I knew I had cirrhosis as it had been proved on biopsy and every ultrasound scan showed the texture change found with cirrhosis. My blood work also showed persistently deranged LFTs and other blood markers.
Your words makes a lot of sence, especially if you take into account that despite the fact that I feel my liver and spleen sometimes, I have zero complaints. I can work, Go to birthday's, having a normal social life, start a love relationship. I really doubt if I was a lot further down 'the road', if somebody with very far furthered Liver desease and / or Cirrhosis you can live suck an active life like me. Maybe im wrong, but that are my thoughts. Correct me if Im wrong. Thx again for your words Kristian!
It will depend really on how much cirrhosis there is. It may be minimal in which case you probably could do most things you mention. I know for a long time I could still be pretty active. I got tired pretty quick and was more fatigued but it didn't stop me carrying on. It was only as the disease progressed that those activities became more difficult. So its not unheard of. And, if whatever caused your cirrhosis has been removed then it may be that it may not progress any further and your liver may continue to perform perfectly adequately.
I think without a bit more detailed scan or at least an ultrasound you'll probably not know for sure. So may be that's a line you can progresses with you own doctor to try and firm up, or otherwise, the extent of any damage that may, or may not be present. Ultrasound is pretty quick and cheap and it will, if nothing else, confirm if your liver and spleen are enlarged and can highlight if the typical signs of cirrhosis, in term of surface texture, are present.
Yes..and no., I’m a ‘freak’ (I’ve had medical students loose on me ). I should have died at least 3 times over by now; the message I try and spread is take what your medical team say seriously; occam's razor is real. They are looking out four your best interests; but are human. Unless you, yourself are in the profession - you’re chances of knowing wtf is going on is negligible- rarely exceptions happen. You will rarely out do your specialist. To put it bluntly, modern medicine is science based. Do you argue with apple how your iPhone works?
Jimmy I am NOT a doctor so this is not medical advice.
My guess is as a NON doctor that either you just had...
1. Very bad fatty liver. This you can recover from.
2. Very bad fatty liver and a one time episode of "liver insufficiency". This you can recover from too.
3. CIrrhosis caught very early. It is tough to recover from but even the famous Mayo Clinic in the USA says if caught early occiasionally cirrhosis can be reversed.
Quite honestly, I would relax, keep living good, eat well, NO ALCOHOL, keeping moving and go to a doctor when you feel it is time. Perhaps that is now but perhaps only in some more time. You seem to be getting better and better, you really seem to be in a place where you can lick this thing. Even medical experts and researchers now conclude that liver disease isn't a "one way" ticket that just gets worse and worse like, say, Parkinson's disease. Fortunately the liver can regenerate, sometimes only partially sometimes more, so a good lifestyle puts you in a great position for a long and healthy life.
Chin up, you are looking good at least right now! And again, I am NOT a doctor, so ignore me if a doctor says differently. I think you are in good place!
Yes I quit 12 months ago after a bad health scare. I have cirrhosis but have normal liver function tests and feel well. It was very unwell 12 months ago with lots of symptoms. None now.
I was a shade of yellow that Homer Simpson would have been proud of! Ascites, confusion, weight loss, muscle loss, oedema of the legs and ankles were the main ones.
Wow that is a lot! That is amazing, I have to say you are not the first one who came from so deep and is doing so well. I am very happy for you, and very well done.
I must admit that I sometimes doubt my diagnosis of cirrhosis too. When I was first diagnosed almost 10 years ago, my INR was 1 but the doc could feel that my spleen and liver were enlarged. All this came as a total surprise. My liver panel blood tests were out of whack and I was diagnosed with cirrhosis. However all blood tests normalized within a year and I feel pretty damn good! So I suppose my liver is compensating well. I have PBC and take Urso. At the time of diagnosis I had been taking an "herbal" for insomnia called jin bu huan for about 10 years...I eventually discovered it had been banned in Canada for causing liver, nerve and brain damage. So once I stopped taking that and started taking Urso, things normalized for me.
I think enough has already been said above about techniques needed to confirm/refute suspected cirrhosis. I think that the simple answer to your question is 'yes'.
I have blood-test values in the normal range, including INR (1, last time it was taken), Child score is 5, MELD 6, no external physical manifestations/symptoms of cirrhosis. The last time my Consultant made a physical examination he said that to look at me, nobody would guess that anything was wrong.
However, I do have liver scarring (fibrosis, compensated cirrhosis) detected with ultrasound and CT, one low-grade and one barely discernible varix detected via endoscopy, Fibroscan score indicating F2-F3/early F3 fibrosis with my aetiology. None of this would have been picked up via bloods or external physical examination.
Good luck, I hope you get to the bottom of things, uncertainty is horrible.
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