British Liver Trust

Specialist Appointment

Good day all I have just received an appointment to see a liver specialist and was wondering what to expect. I'm in Canada but I think our health care systems are very similar except you guys are way more forward thinking when it comes to liver disease so good on your health system. I've posted before about my situation I'm 140 days sober now I quit drinking because I wanted to be a better dad to my two young boys. I have never had any health issues but have abused alcohol for 15 years long before my sons were around. After I was sober for a few weeks I began to obsess about what damage I have done with my drinking I went to my family doctor and told him the truth and asked for any test he would give me. All my blood work came back fine first at 2 weeks sober than again at 3 months sober. The catch is I had an ultrasound done that I was told was clear but when I reviewed it it said My liver had a slight course echotexture.

My family doctor said no worries but I wanted more information so now I have an appointment in march with a specialist. I feel fine I've changed my diet and exercise more now and am in general better health but too much research has had me looking up symptom after symptom. My family life is suffering due to my obsession, Really the only other symptom I have is Red palms but my wife tells me I've always had them I guess I never looked that close at my hands until I read that is a sign of cirrhosis. Anyway I was wondering what to expect from my appointment sorry to ramble on.

Thanks all

Boone

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Hi Boone,

Well I've seen a psychiatrist and have 6 sesions with a Psychol who I saw yesterday. I'm a mess. I have my fibroscsn on March 14th. I'm the "somewhat" coarsened liver lady with 3 adult chn. I have a Psychiatrist appt the day after my fibroscsan as well. Whether I'll feel like going to Psych remains to be seen,depends whether I'm a crying mess. My doc & husband are positive but iike you I look up things that scare me. My daughter has won a part in an Oz movie. Will i be alive to see it. I am a mess, trying to be strong. Totally understand you. Sorry for not helping. In similar "boat". You are not alone Think your "boat" is better though. haha

Shuu

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I'm in the same boat as well... I go to a liver specialist on the 22nd and have already had biopsy and I was diagnosed with PBC and so many other findings that it's all too much for me to deal with.

It's the unknown that is the hardest and scariest. How long can can you live with cirrhosis? I know it's not going away we're stuck with it. I guess we'll just all have to wait and let the specialist answer all our questions.

Boone.. I'm sorry your going through all of this, I hope things get better for you best of luck to you...

By the way, GO YOU for getting sober! That's a major accomplishment and you should be so proud of yourself!

Hi Shuu... I can relate to everything you said. I'm a mess as well and can't stop crying or thinking about It! WHY ME?? I hope things get better for you. Best of luck

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Be sure and listen carefully to what your liver doc has to say and take notes. Have a short list of "bullet points" you want to have addressed. Some patients want to do all the talking and/or argue over the doc's opinions, & they don't like this.

My focus would be on the radiologist's report on your ultrasound. Radiologist's generally are reticent to comment on less than obvious/ambiguous observations like a coarse echo, as the connotations are serious. As your radiologist did, this should indicate there was little doubt in his/her mind this was actually there. This should justify an advanced diagnostic in itself, and since you have no other concrete labs, signs or symptoms, this is your main point to get resolved.

The next step in your diagnosis should be a more accurate imaging study like fibroscan, MRI or CT scan. An advanced blood fibrosis algorithm like "Fibrotest" (aka ASH Fibrosure) might also be an option.

Some doc's will resist advanced diagnostics when labs are normal and no signs or symptoms of advanced disease are present as they can be very expensive. Fibroscan or Fibrotest are economical alternatives to MRI or CT, so you may be more likely to get one of these if you're getting on well with this doc.

Good luck, & I hope you get some good news!

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Thanks for the reply I'm really hopping to get good news but am really quit down at the moment. I continually check myself for symptoms and this has really affected my day to day life. The red palms are concerning as that is the only sign that I can associate with cirrhosis and with the ultrasound report has left me in a tuff spot. I'm also worried that getting a bad result on any more tests would cause more harm to me psychologically as right now heath wise I feel great much better than when is was drinking. Anyway thanks for your tips i'm going to make a small list of questions for my appointment.

truly

Boone

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Don’t worry the liver teams are used to the anxiety and shock of people with liver problems (l think they’d be very concerned if you weren’t worried). If you have to google symptoms then put nhs in front eg nhs red palms in liver disease or nhs treatment for ascities, or what ever you want to! Even put nhs raised GGT or nhs what does xyz mean. You will then get accurate information and not scary stuff that you find on other sites!! I got really anxious until I only used the NHS information! Good luck, I’m sure you’ll be presently surprised.

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Thanks for your reply it's a strange spot I find myself in at the moment I quit drinking to be a better dad and husband and not due to health reason as I always felt fine. The health anxiety came later and the thought of something like a fibroscan terrifies me as I will go from feeling great health wise to having liver disease with a high score in a matter of minutes. It's the finality of that test that scares me. Anyway I'm rambling

Take care

Boone

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On the other hand your score might just show some slight fibrosis which is totally reversible with continued sobriety and a healthy lifestyle going forward and you may well find you have nothing at all to worry about - if the only symptom is red palms then it's nothing at all as you acknowledge yourself you anxiety is making you go in search of symptoms or reading more into things than appropriate. Red palms in the cold of a Canadian winter is probably not uncommon even amongst your 'healthy' peers.

Your ultrasound didn't say you have cirrhosis it said a slightly coarse echo texture - as I posted to someone else when there is cirrhosis it would say things like "dense coarse echo texture in keeping with cirrhosis" etc. Get the fibroscan done then live on ......... you only have one life, make the most of it.

Even a cirrhosis diagnosis isn't the end of the world, my hubbies consultant has patients who've had cirrhosis for 20+ years and still going strong with no sign of requirement for transplant.

Don't let anxiety actually make you more poorly than you are. Your other tests have all been fine which is all the more positive. Let the fibroscan give you some reassurance and get on with life for your kids sake too.

Wishing you the very best of luck, Katie

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Thank you Katie I have read many of your posts and really appreciate your response. I'm sure your right saying I might be reading too much into my symptoms but being 37 I hope to have more years left but I guess nobody knows when their number will be called. I really admire your commitment to everybody on this site and for all your great advise your husband is very lucky to have you in his corner.

Take care

Boone

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The "Palmer Erythema" of liver disease isn't red all over, but in distinct areas. Near the wrist below the pinky finger is most common. the center of the palm is usually white.

I got palmer erythema when I got sick with alcoholic steatohepatitis, which scared the heck out of me. Got an ASH Fibrosure recently which showed "all clear" NO fibrosis!

Dermal artifacts like PE & thready veins on the face & chest occur in a great many drinkers and are not particularly specific indicators of end stage disease.

Keep the faith all will come right in the end. Most X-Drinkers do remarkably well, provided they clean up their act before truly advanced symptoms (jaundice, acute alcoholic hep, ascites) occur.

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Thank you Teri and Metanoia,

I too, have stopped drinking since US. So easy too. My drinking was basically anxiety and guilt for my family and I too have discovered "sympoms" but I've tendency to read too much into everything so who knows. I too, Boone am down at the moment and I don't want to be for my poor husband. My son is constantly checking on me .... what have I done to him emotionally. .. even though apart from my husband he's my strongest supporter but that shouldnt be, he should be living his life without worrying about me. It's now been 2 and half months and even if my fibroscan is ok I'm never drinking again. i was sober for over 20 years.My GGT was 5 over normal but apparently otherwise bloods were ok, but from what I've read, who can tell. I would do anything to be ok. Thanks for your input Teri & M. xx

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Hi Shuu... you seem so sad (I wish I could give got a big hug🤗)

Hun you need to stop blaming yourself and having so much guilt. Your going through so much right now and you need to take care of YOU!

You should be so proud of yourself... YOU ARE SOBER AND THAT'S A MAJOR ACCOMPLISHMENT! 20 YEARS!!!!!! GO YOU GIRL!

As for your son, of course he's worried about you he loves you and that's awesome he's concerned and is checking on you. You have done nothing to him emotionally. You raised a caring son who truly loves his mom.

My son, whose 16 doesn't want to talk about it and he gets upset when I do. I feel he thinks by not talking about it or dealing with it or dealing with me it'll make it go away. And I try to be so strong for him. But im so scared for him. My thinking is if something does happen to me what going to happen to my son? And i can't stop thinking about it. Me and his father are divorced and hes not involved in his life. My son hasnt seen his father in 3 years and wants nothing to do with him.

But WE ARE BOTH OVER THINKING AND WE NEED TO STOP. It's not healthy. But that's what mom's do.

I wish the best for you sweetie and please keep your head up be strong for your family they need you.

I Hope to talk to you soon...

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Thanks so much Teri; If only I hadn't hit the bottle hard for 5 or 6 years recently though. Thanks for your thoughts on my son. He's 31 so yes he'll be ok- just those pesky doubts. Your 16 yo is acting typically as a 16 yo does. Yo him talking wont make it better. Also, as you know, the fear of the unknown. I couldn't do much right then when my three were 16 and I wasn't drinking then. lol . And Teri, YOU are dealing with heaps and doing the right thing medically as far as scan goes. It's a horrid waiting game but we are all here together. I was reading too much, still do and it scares me witless but we are here for each other and you're in my prayers too. Thank you SOOOO much for answering. I have twin daughters, my son and 1 daughter always check on my parents while we're on holidays, like now because even when I'm home I grt crosd with them coz am cross with myself but don't show it coz they're 95 & 90. You and I will be ok Teri. We think too much. I'll be thinking of you now and your son, we will be ok. Really. You have helped so much. All my love and healthy vibes heading your way. xxx❤💕❤

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You brought tears to my eyes. You are truly a remarkable women with such a caring heart.

Ok so you had a little hiccup and relapsed.... that doesnt make you a bad person. Your human! We all make mistakes. No one is perfect and we all deal with stress different.

Have you been diagnosed with liver disease? If so what type and what are your symptoms?

And yes, my friend.... you And I will be ok. We are going to get through this no matter what the fight is. I agree with you, if we could only let our minds stop working over time.

I have 4 children, 2 grandbabies that have been my rock and my reason to fight this. And now a new friend that has helped me as well.

Awww.... Thank you And right back at you! ❤💕❤

You will be in my thoughts and prayers.

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what i meant with your boy is that they hold things in, boys especially. My girls talked more but being identical were and are still each other's best friend so I was often excluded. 😉I understand your pain for your son. My son has always been my worry as he's the most sensitive. My love is with you Teri. Shuu xx

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I drank very heavily in the 5 or 6 years recently. Never again.

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Good for you! Thats awesome and you did it. Your human and we all make mistakes. That's what makes us stronger is learning from the mistakes we've made. We can't beat ourselves up for being human!

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Only bloods and "somewhat " coarsened echotexture of liver. Higher than normal GGT but gallstones which have had for years and cholestasis in pregnancy often because of multiple birth. Pregnancy induced hepatitis they called it then. Didnt tell me not to drink and I did. Thanks for your lovely words too xx💕

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I am going through the same and thus far diagnosed with early Cirrhosis. Absolutely get a referral to a Gastroenterologist and push and I mean push for the following tests. You GP maybe not uptodate on these tests. If I would have had them a few years back I would be in a different ball game.

1. get an Doppler Ultrasound, not the general one;

2. A fibroscan.

3. A fibroSure / Fibro Test. and

Get a full liver profile, not just the typical test. You want to have at least: ALP; AST. ALT, GGT. Patelet; Ferritin; Bilirubin; Albumin; Creatinin; Iron; and INR.

And lower you BMI if overweight.

And do not procrastinate. I hear ya brother.

Phil

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Hey Phil thanks for the insight I'm sorry to hear your going through this . The ultrasound I had was a Doppler style and I was told the portal vein flow was normal and my spleen was normal size . My blood work has included Ast and alt and never have been out of range platelets were between 230 and 250 but I've never had ggt done . My concern was my family doctor said my ultrasound was clear then I read the report and saw the slight course exchotexture comment so I've lost some faith in him. I have been referred to a gastroenterologist in London Ontario so I'll ask him about the other tests you mentioned. I never thought my level of drinking would catch up to me in my mid 30's it's quit the wake up call I hope my boys will get a chance to have a dad but I guess it's my fault so I'll have to accept the consequences . Thank you for your concern Phil and keep in touch

Truly

Boone

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Hey Phil I don't mean to bother you but how were you first diagnosed and did you have any symptoms thanks for your time

Truly Boone from Canada

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I am now 54, retired veteran. I knew I was drinking to much for to long. I was pro active with regards to my health. Therefore, I knew I had a mild fatty liver and my liver enzymes were elevated. There were not to many alarm bells. Just enough to convinced my self I had a bullet proof liver and good genes. My ultrasounds were normal other than mild fatty liver. I never experienced any symptoms. I finally managed to squeeze in a Fibroscan "22 Kpa" which lunched a full range of test such as endoscopy, and Doppler Ultrasound. They suggested micro nodular contours. no acities, no portal hypertension, no varicies with normal spleen size. I have absolutely no symptoms what so ever. Yet I am considered to be F3/F4 Fibrosis or Early Cirrhosis. I am just waiting for a Fibro Test hoping it will show me some better results. My blood work is back to normal except for GGT which is normalizing slowly. From what I have read on your post you should be fine and you are young, I am 54 and waited to long. Find yourself lucky to have been pro active. Phil.

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Thanks for your reply and your service Phil it seems we have similar stories I too was drinking to much but didn't have any health problems I just wanted to quit to be a better dad. I really hope my kids don't pay for my mistakes I made befor they were born good luck with your future tests I'll be hoping for the best for you and myself.

Truly

Boone

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Hey Phil sorry to bug you again but I feel your in a similar situation and understand the fear involved did u get a follow up fibroscan after being sober for a length of time I'm going to be almost 6 months sober when I have my appointment and was wondering if that was long enough to get a accurate result I'm terrified of the finality of a test like that. Hoping your feeling well

Truly

Boone from Canada

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Never fell sorry brother. Was heavily drinking before I had a fibroscan last Sept 20th with at 22 KPa, and BMI of 34 sober thought out, My last Fibroscan results was 20.7 BMI of 29.5, on 26th December. The technician mentioned during our conversation that it was to early to have had a follow up at a 4 month point. Its about 12 months. To have best results from what I have gathered to remove all underlying causes "Alcohol" and remove all existing inflammation "Fatty Liver etc" Do not wast your time on a follow up until these are archived in my opinion. You cannot rely on only one result and method. Stabilize your blood work. ALP ALP, AST, GGT, Platelets etc etc etc. Get a Fibrotest, an other ultrasound at the half way mark. Since you maybe a candidate for Liver Cancer due to Liver Disease. Scheduled your next Fibroscan at your 12 month point. I am presently looking into Cannabis? "https://www.medicalmarijuanainc.com/cirrhosis-medical-marijuana-research/" Just registered yesterday.

Keep in touch and do not hesitate to pose me questions. I would be glad to offer my opinion from my experiences. I am not rolling over yet :) Phil.

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Thanks Phil I appreciate the help I try not to bring it up to my wife so she didn't worry. I've never had a fibroscan just a questionable ultrasound maybe I'll wait a little longer befor I do one I'll defiantly ask the gastro doc about the fibrosure blood test thanks Phil

Boone

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I taught you had a fibroscan done? If not definitely get one, sooner rather than later.

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My family doctor wouldn't refer me for a fibroscan because my blood work was fine he said my ultrasound was clear too but I read the report and saw it said my liver had a slight course exchotexture so I requested a referral. I can't get a private ultrasound in my area the closest I found was 4 hours away Im really left in limbo now just eating better and not drinking I feel good now but who knows what my drinking has done. Again thanks for your support and information Phil

Boone

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I meant private fibroscan in my area

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Good day all just to update my post. I had my appointment with the hep doctor today and first thing was given a fibroscan the results were 6.3 kpa and I was told this was a good score so the slight course exchotexture on the ultrasound must have been mild. The bad news was my ultrasound also showed a cyst I was not really concerned about it but the doctor was so I had another round of blood work and am being sent for a cat scan soon. Im glad I quit drinking when I did and Im also glad that this cyst was found now hopefully it's not going to be a problem. I asked if the cyst was caused from my drinking and was assured it was not so that made me feel a little bit better.

Thanks all and take care

Boone

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I'm happy for you. Just approach each situation with courage and a positive attitude and you'll be A-okay.

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