Hi everyone.
Looks like I've gone as far as I can with the NHS because bloods are normal etc so looks like I'll have to go private for a Fibroscan. Don't have medical insurance so can anyone tell me roughly how much this is going to cost me? Or am I better off hanging on until January for the BLT roadshow. I'd rather be seen sooner rather than later though because of symptoms. Thanks 
Cant help with costs in afraid. Have you had an ultrasound or requested one? Or indeed requested a fibroscan? What are your symptoms?
Hi cannot help re costs but, you should tell your GP that just because your Liver Function results are normal LFT does not mean your liver is ok. I still have Liver Function Tests, my GP is doing one next Monday with other blood tests. I expect the result will be normal but I and my Hepatologist and Gastroenterologist know differently. You do not mention what symptoms? I always have perfect Liver Function results (so probably do many others). You should push for a referral under the NHS. This just is not fair. Good luck!
Hi thanks for the replies. Ok symptoms/reasons for me wanting a Fibroscan :
Heavy drinker for 20 years.
Hypoglycemic (?) night sweats/feelings.
CT showing enlarged Liver "with no focal lesion" Feb 2012.
Two periods of Brain fog.
Two -short- periods of discoloured stools.
Bad reaction to a Fluconazole tablet.
Pain under the lower right front ribs.
Pain in the rear/side lower left ribs- especially during/after viruses....Spleen pain?
A period of very itchy lower legs.
Feelings of heaviness in throat...varices/increased pressure?
In addition to the CT I've had a couple of ultrasounds showing Liver normal.
Have you had your iron levels checked, some of those symptoms could be harmochromatosis
Hi thanks for the input Yes on my last two full blood counts they of course do Iron levels and they were showing (a little) low. I thought Haemochromatosis is too much Iron?
Hi Avux - what extra information do you hope to get from a Fibroscan? The CT shows you have some enlargement to your liver, so rather than chasing a Fibroscan, have you discussed with your medical team what to do about this? I presume you have now stopped drinking.
Hi Bolly. Nobody commented on the Liver at the time of the CT as LFTs were all normal. I myself just thought " Fatty Liver?" at the time because I thought then it could be pancreatitis. Predominant symptom I was getting at the time was pain in the rear left lower ribs. But because of all the other symptoms since, I'm thinking this is more likely Spleen pain secondary to Liver Disease.
Saw a Hepatologist in April 2013 re: Brain fog, "Spleen" pain, "enlarged" Liver on CT, drinking history and discoloured stools. He wasn't convinced, told me the Liver being enlarged on CT was only one opinion, told me stool changes can be caused by diet (I've never ever had white coloured ones before hence me thinking an interruption to the bile flow) & pretty much told me no sign of anything & to wait & see before suggesting to my GP I be referred for a course of Cognitive Behavioural Therapy. So that was £150 well spent. Nice. Easy to say wait & see when you aren't the one experiencing these symptoms without any real credible explanation for them I reckon. But meanwhile I need mental help for even suggesting it could be Liver problems. Cool.
Obviously had more symptoms since then hence me weighing up a private Fibroscan, if only for the possibility that it may show something so the medical establishment could maybe then start taking my concerns a little more seriously. That's the aim anyway and oh yes I have been sober since this all started in October 2011.
Hi again Avux. When you saw a Hepatologist I presume it was as a referral from your GP. Did you only see him the once and if so, why were you discharged from the clinic. Did the hepatologist repeat any tests or initiate new ones, ie had you already had the CT done which showed the enlarged liver and he declined to look at the image, or did he order the CT but then dismiss the results? I'm a bit confused, sorry.
Maybe the suggestion to have CBT was to do with the underlying reasons for drinking history?
Oh my, have just read your other thread where you were seen by Dr Martin Lombard, now the National Clinical Director for Liver Disease. Gosh, I think he is far better qualified than us on here to say whether or not you have liver damage, yikes!
Hi again Bolly. I saw the Hepatologist as a result of my own pushing basically. The GP was very reluctant, condescending even.
I saw Professor Martin Lombard only once. I was a bit underwhelmed by the meeting to be honest, but yes he is the government appointed head honcho on Liver disease strategy as you say. Which is why I picked him. Because of his stature.
He did not do any tests. He perused the test results I had already had to that point: Bloods, CT, Ultrasound. He said "we could do more tests, but I don't want you to waste your money". A message that sends out very mixed signals and offers absolute zero further insight. He was a bit too laissez-faire for my liking. After saying "The Liver can repair itself" (something I already knew, up to certain stages of Alcoholic Hepatitis as I said to him) he then almost casually added on "you might have a bit of that". Well.....great. So that's it then? "Wait and see" and do nothing now?
I found it amazing that a man of his stature hadn't at least heard of the concept of Terry's Nail's and the reported links with Liver Disease. Now, he might not agree personally with that concept/observation/link...but to have never even heard of it?! And this Guy is coordinating Government Liver Disease policy....?
He looked at the CT and I've already said, he dismissed it as being "only one persons opinion".
Of course, essentially, he is right, if this is serious Liver Disease, it will make itself known beyond doubt at some point. Thing is, for a multitude of reasons, I'd rather have the explanation for all my current symptoms NOW.
To that end, I asked to be referred to Dr Hanan Mardini for a FibroMax test (a Liver Biopsy is out of the question because of test results so far being "normal") but instaed of doing a FibroMax, Dr Mardini got back to my GP and has put me on to Dr Chris Record and has suggested I go to him for a Fibroscan. This will be private I'm assuming, hence me asking for a heads-up on the cost
The London Clinic website says:
"A FibroScan alone costs £312. We also offer a package that includes the scan, a set of blood tests including liver function and a consultation with a Consultant Hepatologist, for £395. Additional investigations including other blood tests would incur an extra fee". Hope that helps (but I think you had found that out yourself about 5 months ago, lol). Most NHS hospitals are a bit coy about what it would cost to do a procedure privately, so I doubt its possible to find out on the internet what Newcastle (presume thats where Dr Record is) charge, unless you are lucky on here to find another private patient who had a Fibroscan done there.
Re Terry Nails, I believe some people with liver disease do have what is described as Terry's Nails but its no longer used as a diagnostic tool.
Ok Bolly thank you very much for the info: pretty much what I expected, anything up to £500 all in. Enough to leave a dent in anybody's wallet but the way I see it is I'm pretty sure I've saved well in excess of that figure by not drinking alcohol for pretty much the last three years!
Hi avux,I'm bewildered why you should even have to consider going 'private' to get a fibroscan- the machines are freely available throughout the NHS and provide a much better picture of your livers overall state,living in Wales and after refusing the conventional treatment for hep c,I receive an ultrasound + fibroscan every 6 months-this is your rights, demand the same!Good luck with it all.
Hi bolly its about£300 plus £200 to see consultant.. Don't go anywhere as fibroscan notoriously vary.
Pick good consultant eg from private sector of hospital.. A heptologist eg from royal free and then see them privately .. Ask secretatary if you can have fibroscan done at same time as consultation!
Hope this helps.
Fibroscan measures fibrosis,
Ultrasound scan checks for cancer,
Alico
where are the best ones?? ty
Hi all,just to (slightly)expand,ultrasound will pick up on fatty and enlarged liver,also enlarged spleen and any obvious tumours in the pancreas/kidney general area. The fibroscan involves 10 different scores/readings through the liver mass-measuring hardening or fibrosis within the liver using sound waves to determine the various stages of hardening.All ten scores are divided to give you an instant readout-7=normal,14=oh heck,of course you will get a variety of scores from differently damaged areas of the liver,best to you all.
Thanks for all the extra info city man, much appreciated. Symptoms aren't too bad at the moment apart from some periods of hypoglycemia so I am going to try and hold on till January & the BLT roadshow and hopefully have a Fibroscan then. Docs won't give me one on NHS because of all other tests (apart from enlarged Liver on CT) being normal. Guess I'd have to be crawling through the GPs door on hands & knees with yellow eyeballs?
Good luck to everybody else confronting indifference & inertia out there!
Hi AVUX i have been in contact with BLT and they arent doing the road show in Jan 2015, im pretty gutted! But they consider LFTs and Ultra sounds being clear there shouldnt be much need for a Fibrosan, im not sure I agree. Apparently its because of no funding to do the roadshow
Oh no. I'm not sure I agree either. That's a real drag. Hope they get the funding and get the show back on the road at some point 
bollocks is exactly what I thought! it looks like we are in the same boat. My mind tells me I need the fibroscan, im still worried. I have had a clear ultrasound and 2 lots of LFTs and blood counts. GGT was 23 after 3 weeks off the beer, 12 weeks it was 19. ALT was 33 and then 20. The doctors think im nuts and need a head doctor.
My symptoms are feeling like crap after a heavy week end, 3 months on and im still not right, they did find Gastritis though, i have had yellow stools which then went to brown over a few weeks, i felt weak, dizzy and sick. I had high white bloods initially, alot of this could be the Gastritis, which was a pretty heavy attack I think. My liver also seemed to ache for about a week. I am getting better, but this is very slow for me, it has me worried. A fibroscan must be done I think.
Well we've just got to keep on keeping on. Pretty sure I'm having Encephalopathy for a third time at the moment, pains in liver area and spleen area...going on for three years, I've been sober since it started three years ago today coincidentally, 9th October 2011, unfortunately, doesn't look like I stopped boozing in time. Here I am, three years on, still undiagnosed.
Suppose I should take a little comfort in that it isn't bad enough to be absolutely blindingly obvious to the medics just yet! :/
Good luck!
Tim. If you did manage to get a Fibroscan done, would the result, whatever it might be, diagnose the cause of your symptoms? No it wouldnt. I think you need to identify the cause, and then remove cause, rather than become frustrated at not being supported by your medics in getting a Fibroscan.
No a Fibroscan wouldn't diagnose the cause of the symptoms, it's true. However, a less than great result may begin to give some credence to my bleating and warrant more serious investigation. As it stands I'm a bothersome fruitcake without supporting evidence, just a whiner with lot of unproven symptoms.
"I think you need to identify the cause, and then remove cause" - well, I think Oliver reed-esque alcohol binging is the cause hence me being sober for three years now.
I'm treating it as Liver damage, don't see what else it would be, so am eating and exercising accordingly as that is pretty much all you can do as an individual, pending any obvious worsening of symptoms.
Amazing you can get seemingly get encephalopathy and other symptoms but bloods and ultrasounds still are normal, but there you go.
Unless a CT showing an enlarged liver is backed up with other stuff there is nothing to see here basically.
It would be nice to get it recognised though, just for absolute confirmation of what precisely it is I'm dealing with.
I totally understand Avux, im in the same situation as you. Im putting my issue as a case of moderate alcoholic hepatits, i didnt go to the doctors until 3 weeks later and had bloods. White bloods up and Neutrophils up, thats an inflammation response., my liver seemed slightly swollen for a week, it was sensitive to palping after 10 weeks! My billirubin was 19 just in range, my urea at the bottom end. Did improve after 10 weeks. But im concerned about my years of heavy drinking a couple of times a week, although my GGT was only 23, i think the binge has(must have) caused some Fibrosis.
I need a Fibroscan or a Fibromax test. Ultrasound is pretty useless at finding Fibrosis and LFTs cant see it either, GPs are too quick to see normalish lfts and say your fine, this could be a long way from the truth!
Why are you having to pay for a Fibroscan? I'm guessing you may be in the North East of England as the doctor you mention below comes up as Newcastle. The liver unit up there is very good, your symptoms sound a lot like mine. (I have PBC, Primary Biliary Cirrhosis, not caused by alcohol or drugs, more my own body attacking my own liver. I can't mend it, its either like this for life or transplant if things go worse) If you had this I feel sure they would have told you as they do specialize with this in N/Castle. It isn't widely a known disease and you would have asked or been explained what it was. If it is an enlarged liver due to alcohol they must be able to offer you some explanation of what is happening. I would ring the secretary of the Consultant you saw and play a little dumb and say you can't remember everything the doc told you and could he/she send you out a letter explaining what is what. Alternatively you could make an appointment with your GP and has him/her.
If the scan has showed up normal that has to be a good thing, the Fibroscan usually does the job of telling you how cirrhotic the liver is and they don't seem to have indicated that yours is. It sounds like it may be swelling at times (pain under ribs) as the liver swells the sac around it stretches and that could be the cause of the pain, apparently the liver doesn't really pain.
If I were you (and this is my own opinion) I would stop worrying about the cost of the Fibroscan and go back or telephone both the Consultant & your GP to give you answers. If varices are developing you need an endoscopy, I've had two major bleeds & both times were a nightmare.
I wish you the best of luck on your journey to figure this all out and remember drinking little to give your liver the chance to mend and you may heal. I really feel for you. Monday tomorrow so get those phone numbers ready to ring and ask for appointments or letters to help you understand what is going on with your body.
Your assertion about a Fibroscan is incorrect. It is much more sensitive than a Ultrasound and can tell how much fat and what stage any Fibrosis is, cirrhotic is F4. I dont blame Avux for wanting to know the situation.
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