sunflower19 years ago

Hi Graham, I cant answer many of your questions but I can tell you my experiance, I went to see a Hepatologist a while ago as I was (and still am) having the same symptoms as you. I cant remember your bull list of symptoms but mine is liver pain, pins and needles, itchiness, etc etc. He said I DO NOT have liver disease but he did not examine me at all. I had to beg him to do more bloods which all came back normal (and are still normal)

I think if you ask they will do more bloods. I had already had a Fibroscan done through the Liver Trust which I told him about, he said he would have referred me for one of those if I hadnt already had one done.

I am nearly 100% sure they will not do a biosy, you would need to know in advance if they were doing that I think.

Please try not to worry, what sort of specialist are you seeing and what time is your appointment?

GrahamB8 in reply to sunflower19 years ago

Hello again, Sunflower, and thank you for your reply...

The letter I received just gave the consultants name and said I'd be seeing 'members of his team', which is very similar to the standard phrasing we use in the clinic that I work in, too.

Regarding your own diagnosis; I'm really pleased to hear that they'd told you that you don't have liver disease, but how did they work that out so quickly if, as you seem to suggest, they merely deduced that just on the basis of one visit?

I'd be really interested to hear a little more on that, and also on what form the consultation took with regards to questions they asked, and what further tests they did beyond the bloods.

Regards again

Graham

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GrahamB8 in reply to sunflower19 years ago

Hello again, Sunflower

Just another question whilst we're on; What, exactly is a Fibroscan, and how is it conducted? Does there have to be a GP referral for this, or is it something the hospitals can/will do as a standard investigative procedure?

Regards

Graham

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GrittyReads in reply to GrahamB89 years ago

I don't know the details but I've been told you can book a Fibroscan at one of the British Liver Trust roadshows. I'd check out when they are. However, if you've got worries about your liver, especially if you fall between diagnoses, I think you should ask to be referred for one. When I was told I had antimitochondrial antibodies (serious indicator of PBC) I was just given blood tests (esp liver function tests - which were, and still are, perfectly normal) physical examn. and an ultrasound. Although they are less keen to offer biopsies, I think I would now also be offered a fibroscan and maybe an MRCP scan. They can do all this, and more, so if you are worried - ask.

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sunflower19 years ago

Hi Graham, Please dont tkae what I am saying as "standard" as I am just telling you "my" experience, there are others who have alot more knowledge than me.

I still dont believe what they have told me, as I have said, I am still having symptoms. I have been having tests for around 3 years I think, maybe more. They have come to the conclusion I dont have liver disease as I have had blood tests, Ultrasound and Fibroscan although I think that the only way to know for sure is a biopsy which they will not do unless the other tests are abnormal. Mine arent.

With regards to questions they just asked me it was just how much I drank, exercise, family history etc. The consultant, as I said did not even examine me, just looked at me and said I had no jaundice and due the the fact bloods being ok, Ultrasound and Firboscan, I dont have liver disease.

I think a fibroscan detects the stiffness of your liver and anything over 7 is considered out of range. I had mine done through the Liver Trust roadshow which happens every January, they do a roadshow and travel around the country. Its a machine similar to an ultrasound I think.

If I were you I would ask the specialist to refer you for one tomorrow, I dont know where you live and if they have them in your area. We do have them in my area.

Anymore questions please ask. Good luck

margaretkirkman9 years ago

Easier said than done, but try not to be so worried. This is a positive step towards finding out what, if anything, is wrong with your liver. As to tests, they will certainly do bloods, some of which your GP won't have done. They will not consider a liver biopsy until investigations are completed, and the results indicate a biopsy is necessary.

Maggie K

AyrshireK9 years ago

I wouldn't worry at this stage you are not going to whisked away for treatment at your first appointment with liver specialist.

It will be a sit down discussion about your health history and your symptoms plus a discussion about the results they already have from your various earlier tests. They will probably get you to lie on the bed and they'll prod and poke your tummy so they can feel the various organs - liver, spleen etc. and probably will take a whole raft of blood tests as others have said these will be more than what your GP has ordered previously.

It sounds unlikely that you have any cirrhosis as it would have shown up on the scans (ultrasound and CT) which you've already had. The short-fatty chain they have mentioned will no doubt be discussed and it might be that the liver specialist will want to examine that further or indeed may know exactly what it is and will perhaps suggest either some treatment or a lifestyle adaption - change in diet or what ever.

Most (but granted not all) liver cancers show up in ultrasound or CT scans (that is why known cirrhosis patients have at least an ultrasound scan every 6 months to check) plus liver tumours often give off a tumour marker in the blood which is what the AFP part of a liver bloods screen is and changes in this might indicate a cancer - again it would generally be picked up at scans.

If doctors think a biopsy is appropriate - this would be to help with diagnosis or to check for ongoing inflammation of the liver. It would be done either as an outpatient or as a short stay in patient. It won't be happening at your first appointment and they will only do one at all if all the other tests indicate it - they do not like sticking needles in when they can avoid it.

Just some possibly helpful hints - Make some notes before you go. Jot down your symptoms as you feel they are, don't downplay them tell them everything as something seemingly very insignificant might give them a clue as to what is going on. Make a note of any questions you want to ask, make the most of your appointment, don't leave and then think "Oh I wish i'd asked that!". Is someone going with you? sometimes two pairs of ears are better than one. Don't feel rushed, you will no doubt discover that clinic appointments with liver specialists run later than scheduled, it's because they are few and far between and people want to get all the information they need so no doubt you will not be seen at your allotted time and you'll be in longer than a standard GP appointment (well I would at least hope so).

Anyway, best of luck with it, hopefully you do not have an issue with your liver or if you do it is being caught early enough for suitable treatment to be put in place to prevent it deteriorating.

All the best, Katie

GrahamB8 in reply to AyrshireK9 years ago

Thank your very much for your very helpful comments, Katie

I do hope I'm not being too confident too soon, as I was convinced by the Consultant's take on things today in that he said he really didn't think that there were any grounds for real concerns.

You sound very 'clued up' on all these things, if you don't mind me putting it in such terms, and I wonder whether you might feel I'm being too hopeful too soon regarding things...

Regards

Graham

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Ph1ldad9 years ago

Hi Graham, I've had cirrhosis for over 15 years and now have liver cancer neither of which are painful in themselves. Go to see the hepatologist and just keep asking questions of anything you don't understand. It's not usual to be referred for a biopsy on your first appointment; they're more likely to recommend lots of blood tests and maybe an ultrasound to check it all. Don't go with preconceived ideas and try not to second guess the consultant or read more into what is said. I did that and gave myself unnecessary stress for months lol. Good luck, Phil

GrahamB89 years ago

To all who very kindly replied to me above:

Hello again, all

I went to see the Consultant today, and I'm delighted to be able to tell you that all went really quite well. He said he'd studied all the scans together, along with the range of blood tests I had done, and was convinced there was nothing there to worry about that couldn't be put right. He didn't do any further tests today, but asked me lots of questions, and did a medical check, and then sent me for a few more blood tests just to keep on top of what was going on. The end diagnosis, he says, is a fairly mild case of non-alcoholic fatty liver disease and he said he didn't think I needed any meds to prescribed, and was confident that a switch to a healthier diet, and a reduction in fatty foods could sort the problem out. He did add the caveat, however, that I should keep it firmly in mind that even this could deteriorate further if I didn't take care of my health now, and allowed the problem to go unchecked.

He said that if the discomfort continued he has the option of several other investigations, but said he didn't feel they've were necessary at all just at the moment, and said he was pretty convinced that the condition would be greatly improved by a careful, measured diet, with a careful alcohol intake and a bit of exercise.

I'd certainly have taken that result had I been offered it prior to my appointment, and feel so much better today having finally had this 'lift' out of all the worry and all the fears.

Should I now allow myself to feel a bit better now? I'm certainly quite comforted by this latest round of developments, and the really big worries have been alleviated somewhat by the things he said to me today. Could a liver specialist such as he be so very badly wrong?

Regards to all, as ever

graham

GrahamB89 years ago

Hello again, all

I forgot to mention above: The Consultant hasn't discharged me yet, but wants to adopt a dietary approach to things for now, and said he'd be arranging a further appointment with him in due course.

sunflower19 years ago

Hi Graham, great news glad all went well for you. Sounds good to me. Are you overweight? How is your diet? Do you have a follow up appointment in 6 months? Really pleased for you. Please keep us up to date.

GrahamB89 years ago

Hello again, Sunflower

Thank you again for your kind comments.

I'm 5' 8" and 14st 7lbs., so I clearly need to lose some weight. The Consultant said both he, his wife, and many of his friends have lost weight pretty easily on the 5:2 diet, and he recommended that to me today. I already have that book, although I haven't really read it, but I'll be looking at it now in a serious attempt to get some weight off and move towards a fare healthier diet.

As regards a follow-up appointment, he said he'd give me a couple of months provided my blood results were all OK, and would write to me again in due course provided I hadn't been I touch with him in the meantime.

Feeling pretty happy then tonight, but very acutely aware that the weight is a real issue, and needs to be addressed as a real priority...

Graham

sunflower19 years ago

Hi Graham..Really pleased you are feeling happier, I know how it feels to have the weight lifted,I hope it stays that way for you. I know that Briccolone (member on here) has successfully followed the 5.2 diet and indeed friends of mine too, so its deff worth a shot. Lots of luck, keep us up to date.

AyrshireK9 years ago

Hi Graham, other than getting a 100% all clear I think you've got a great outcome from your consultation and I hope you feel lifted and assured. You asked if I thought you were being too optimistic, no you've got a great response from your doctor and the fact that you should be able to improve your health and prevent deterioration following a proper diet plan is brilliant.

The liver is a pretty resilient organ and takes a hell of a bashing day in, day out with the toxins we throw at it. It's pretty much the only organ which can regenerate and mend itself (providing the damage hasn't gone too far) and now that you know the cause of your very mild damage you can take the steps to help it repair so you know what you've got to do. Shed those pounds, keep fit and active and I am sure a lot of folks on here will agree really think seriously about not drinking at all.

Some folks have previously posted about being advised that drinking safely within the medical guidelines is ok but have still gone on to develop cirrhosis. Even drinking within the guideline limits is going to put further stress on your already stressed liver so if you can do without then that would be the best option and would give your liver a better chance of a good recovery. Even though alcohol hasn't been the cause of your condition it is not going to help.

It is good that the liver specialist is going to keep you on his/her caseload, that means your condition is going to continue to be closely monitored so you are getting good care and not getting fobbed off and obviously if the discomfort issues you are having continue they are going to be the best people to order the tests as needed.

SO all in all a very successful outcome to your consultation, all the best to you with your diet plan and hope in a few months time when you next have a consultation you are on here saying your liver is looking a lot healthier.

Katie xx

angse8 years ago

Hi don't be anxious if there was anything abnormal like cancer, it would have showed up on liver scans, I have to be screened every 6 months for that reason as I have cirrohiss, with me they had to do a biopsy before they could get an accurate diagnosis of cirrohiss, it wasn't to bad, when I saw my liver heptologist I had liver scan, bloods done and a examation, don't worry they will sort you out, let us know and good luck. Annette

Allyws5 years ago

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Tricia754 years ago

Hi Graham, I’ve gone through and read all your posts. I am having some problems too with pain in my liver area. I’ve had an ultrasound which showed I have a fatty liver/enlarged liver. Is that the same thing? Then I had a cat scan that showed my liver was normal. My blood work so far has been normal. My issues started 3 weeks ago and hAvent gone away. My pain started in my upper stomach but when the dr pressed on my upper right side, it hurt very bad. It felt swollen. They suspected gallbladder issues but my scans don’t show that. I’m very worried. I’m 43. Any advice?

I hope you are doing well and feeling good now.