Guidance please?

[Charl1e]

Hi, this is my first post, though I admit to have been following for a while. There does appear to be a number of knowledgeable participants to this site, and whilst I am aware not necessarily medically trained, I would value some input please. So, here's my story so far....

Last April I attended my GP with a tummy complaint. Following a quick external examination I was sent for blood tests and an ultrasound scan. 

At the follow-up meeting (with a locus), he was undecided weather to monitor for a year or to send me for a follow up CT scan. We discussed my levels of alcohol consumption, at which point I was drinking wine every night with dinner, as well as beer on Friday & Saturday nights. Suggested I should reduce this, which I did, and cut out the wine drinking in the evenings.

Due to admin issues at my GP surgery, I didn't get to attend the CT scan until January of this year. Then came the follow up!

At this appointment, the GP looked at my results and said, "ah, yes cirrhosis, but we knew that". - Well, she may have, but I certainly didn't as this was the first I'd heard of it! "And spleen slightly enlarged". I was a wed bit she'll- shocked, and all I could ask was had it changed since my US scan? No, she said.

Anyway, I then did what most of us living in the 21st century do, and got onto Google (which is how I came across this site), and began the research. Apart from some discomfort around my liver region, I haven't experienced any other symptom, except for very occasional itchiness on the back of my calves. The discomfort I felt on my left side, which was presumably the enlarged spleen, has actually now gone altogether.

I happened to be in Germany during February and mentioned this to a friend, who suggested I go and have a blood test whilst I was there, visa a friend of a friend, which I did. All results were within range except for GGT at 237, Vit B12, 335 and Antistrepolysin at 253.

On my return back to the UK, I decided to obtain my records from last year to try and ascertain where I actually stood. That made interesting reading, and the following are the results that were flagged:- Prothrombin time, 12.1 secs - high. Platelet count 131- low (range 140-400), Mean Corpuscular Volume, 100.7 - high (80-100), Mean Corpusc. Hb conc 349 - high (315 - 345), Ferratin - 448, high (15-350), total protein - 82, high (60-80), Urea, 2 - low (2.5 - 7.8). 

Then there was the CT scan, which reads like this:-

Mildly lobular contour of the liver suggests possible early background cirrhotic changes. No focul lesions are identified. No biliary duct dilation. Portal & hepatic veins appear patent. Mild splenomegaly 14.8 cm transaxially. Pancreas, adrenals, kidneys and urinary bladder appear unremarkable.

Unprepared appearances of the large and small bowel are unremarkable.

No collections and no free gas. No significant retro peritoneal lymphadenopathy. No destructive bony lesions. The lung bases are clear.

Impression:

Imaging appearances are suggestive of possible early cirrhotic changes as describe above. Otherwise, unremarkable study".

The CT scan certainly similar to the ultrasound, except in that result the spleen measured 12cm.

In stating, "ah, yes, cirrhosis", I have got the impression that perhaps the GP was slightly overreacting, and the reality is I have fatty liver. Does anybody concur with my interpretation? Or am I playing it down?

The outcome of my last appointment, was again to leave everything for a further 12 months, and to reassess then. Judging by numerous posts I have read, this seems a little long.

In addition, I am not on, nor ever have been, any medication for any medical condition., and my latest blood pressure reading was 115/80, pulse 94. I am a 56 year old male.

Apologies for the leangthy post, but all the facts, as I have them, are here and I appreciate any feedback anyone has.

Thanks for listening.

[Charl1e]

PS Auto spell check is such a pain sometimes.

[AyrshireK]

Hi Charl1e, welcome to the site.

Ok, so it sounds like the CT scan is showing early cirrhotic change - this may well just be fibrosis which is generally regarded as reversible provided you maintain a t-total lifestyle from now on and do what you can to eat healthily, exercise and generally look after yourself.  This could possibly be due to fatty liver as you mention due to your fairly heavy alcohol intake up to now - though there are many causes of non-alcoholic liver disease which shouldn't just be ignored.

I personally would feel that 12 months is too long and I also wouldn't be happy to merely have a GP monitoring this situation and making decisions about your liver.

If I were you I would be requesting a consultation with a gastroenterologist or even better a hepatologist to keep an eye on your liver going forward.  An ultrasound scan every 6 months would also be advisable.   Perhaps with positive lifestyle changes you can change this condition around or at least keep it in check.  What you don't want is to go all the way to full on cirrhosis if you could have done something to stop it.

Maintain your abstinence from booze for a few months and perhaps get bloods repeated but I would be tempted to get a specialist to keep an eye on your liver.

There are lots of postives in your CT scan - the normal portal veinous flow, normal bile ducts and all that.  Blood results arn't too bad either.

Fingers crossed it's been caught soon enough for you to do something about it but I still would think a 12 monthly review is too long - at this stage anyway.  You need to see that this has been slowed, halted or reversed.  If something else is going on, then a lot can happen in 12 months.

Most folks see a doctor every 6 months at least.

Anyway, hope that answers some of you queries.

All the best, Katie

[Charl1e in reply to AyrshireK]

Hi Katie, thank you for your response & insight.

[Catfishjumpin]

I think you understand fatty liver disease causes cirrhosis, right. I would quit drinking. You sound only half way into any real trouble yet, take advantage of that. I bet if you asked to be reassed with new blood work in 6 months, they would comply. My doctors only see me every six months and I have liver cancer. I had hep c for 42 years but I did a treatment 2 years ago that put the virus in remission but left me with liver cancer. There is not a lot they can do for you or me but keep up with our labs, the blood work reveals the health or lack of. 

[cazer]

Hi charlie glad you think the site is useful..i agree my gp freely admits i know more than her.of course they have the technical know how but do get a little over excited sometimes.

Sounds from your results and scan that any damage  is not too severe and lets hope you can keep it this way or even improve it.

I also tjink you should be referred to a hepatologist to get a clear idea of what is causing your liver damage...do they think it is alcohol...? Has viral and autoimmine causes been ruled out ?

 Either way if you possibly can sray off any drink and try  to eat healthily then that will help as much as anything.

Ive have a very enlarged spleen and dont think ive ever had pain from it but  did end up with stomach ulcers and the ppsition in  my torso of pain is also one end of spleen so dont assume all is down to liver problems.good luck with getting answers.best wishes cazer.

[Charl1e in reply to cazer]

Hi cazer, thank you for your comments & input.

[Hidden]

Hi Charlie, I have just re-read your post - something was obviously niggling me - and see that your serum ferritin level was 448, which is above normal. There are a number of things that can raise this and among them is genetic haemochromatosis, (GH) which can cause a wide variety of symptoms. It may be that your GP missed its significance. It is an under diagnosed condition (less than 10% of the 1 in 200 of the population). Another visit to the GP to raise this possibility could lead to a genetic test to confirm or otherwise. For more information about GH see haemochromatosis.org.uk

Mike

[Charl1e in reply to Hidden]

Hi Mike8702, and thank you for your input. It actually struck a cord. Back in around 2011/2012, following tests for suspected diabetes (thankfully clear), my then GP spotted increased iron levels (those were obviously the days when GP's actually looked at results). Following a number of further blood tests, I was referred to the local hospital and had a consultation with a senior "blood doctor". She assured me all my blood tests were fine & nothing to worry about. However, with you having pointed out the high Ferratin result, it does make me wonder. I also wonder why the surgery didn't pick it up, mind you I did see three separate doctors during the process, two of whom were locums, whom I doubt looked back over previous results. In this day & age it seems to me that doctors don't care as much as they used you, and they certainly don't explain medical outcomes/translations either. From other posts I've read, this appears quite a common issue.

So, GP surgery bound to discuss Ferratin levels further (if I can get an appointment).

I read the link you sent on haemochromatosis - my mother was Scottish, so too is my elder brother. My mother suffered with rheumatoid arthritis, and my brother arthritis for most of his adult life.

I wonder.......

[cazer]

Thanks charlie.well spotted mike.  This is  trouble sometimes things get  overlooked. Am i right in thinking haemochromatosis can affect liver ?

Hope you get to bottom of it.x cazer

[Hidden in reply to cazer]

Hopefully this will be in time before you get to GP. In light of ferritin score and heritage, you might need to push for a genetic test - they cost about £50 so there may be some resistance. GH affects all major organs, including liver. I was diagnosed with GH on 2004 and liver cancer in 2011 so early action is important and treatment is easy.

Mike

[Charl1e in reply to Hidden]

Hi Mike,

I also managed to translate more of the tests I had in Germany. Transferrin was 2.1 (2.00 - 3.6), and saturation was 42.

In addition, AST was 42, ALT 35, and ALP had reduced from 123 down to 98. Also Albumin was 39. From what I can decipher these appear reasonable.

Regards,

Brian.