Bear with me, this is quite a lengthy post, but I hope some of you will read and perhaps advise...
My name is Tim and I was a frequent heavy binge drinker from about age 18 to 40.
In October 2011, there were signs that something was afoot. Immediately acknowledging my heavy drinking history, I stopped drinking all Alcohol immediately.
I developed back pain to the rear lower left ribs & this seemed to be exacerbated after eating. Coupled with a change in stools to soft and bulky, I thought this could be Chronic Pancreatitis caused by Alcohol. However, I also began having Hypoglycemic episodes (the opposite of what you would expect with Pancreatitis) and back pain eventually going all across the back over to the bottom right rib cage.
I lost quite a bit of weight, but put it back on over the next few months so I now don't think this is Pancreatitis, as Pancreatics struggle to put any weight on.
The only thing that has stood out from a long regime of blood tests and scans over the last 2 1/2 years since was an enlarged liver on CT in February 2012. Liver functions were fine and there was no pain in that area so I wasn't overly concerned at the time.
The doctors said the back pain must be Musculo-Skeletal and/or IBS.
After a regime of taking 3 Evening Primrose Oil capsules per day for over a year (recommended for inflammation, I guessed it would be a good idea) I suddenly decided to stop taking these. Immediately, I noticed two chalk coloured stools followed.
My attention then immediately turned to the Liver.
I noticed that on five of my finger nails, I had lost the Nunulas, and I had developed red bands to the tips of these nails.
Also, after coming off the Primrose Oil (in March 2013) I also developed a period of mental fog, where I was disorientated and found it harder concentrating on things.
I went to my Doctor and insisted on a private referral to a Hepatologist (Martin Lombard, the UK' Governments Tsar for Liver Disease no less) and also at my own suggestion, my GP perscribed Lactulose to see if this helped with the mental fog.
So, I saw Martin Lombard, who basically perused all the data and scans and said "we can only diagnose what we can see" and that there was no outstanding evidence of advanced liver disease. As regards the enlarged Liver shown on CT he came out with a reply along the lines of "thats subjective and only one opinion". He said there was no evidence of Spleen enlargement (I asked because of the pain in my lower left rear ribs that started all the alarm bells ringing in the first place) and also no evidence of Portal Hypertension. He also said he had never heard of Terry's Nails and said "we dont diagnose things on that basis anymore, maybe they did 100 years ago"
He basically said, just live healthily and what will be will be. He didn't rule Liver Disease out, but he didn't rule it in. He wrote to my Doc basically saying "no cause for alarm".
Meanwhile the mental fog I was experiencing, did not seem to react to the Lactulose intake - and I took up to 150ml per day at the end of the trial. It just went away of its own accord after about six weeks. I took this as a good sign. Maybe the Liver was just a Fatty Liver and taking the Primrose Oil for a while had exacerbated that?
Meanwhile, I was still getting the back pain out on the wide left, tip of rib cage.
Ok I thought, the docs suggest IBS. Lets give that a REAL good looking at. I looked at the concept of Dysbiosis in the gut and all the wonderful things it can cause: Hypoglycemia, Brain fog etc. It seemed to tick quite a few boxes.
So, I read that Candida overgrowth is a common cause of dysbiosis.
In the absence of any better suggestions from the doctors, and nobody saying "This is definitely Liver problems" I purchased a single dose 150mg Fluconazole tablet on 6th September 2013 and took it that day.
Within 24 hours, I developed pain under the front right lower ribs. 48 hours after that, I pass two pale sand coloured stools, the stools then reverted to a more normal shade. I also noticed my urine had a very strong ammonia odor about it. And then the Brain Fog returned.
I had a full blood count done on 9th September 2013, blood came back yet again saying all is normal. Still having the pain under my lower front right ribs. Went back to Doctor who sent me for an Ultrasound of the Liver. When I had the ultrasound I was suffering with a virus and the ultrasonographer said the Spleen was "ever so slightly" large at a diameter of 12.5cm. But nothing really to worry about & the Liver looked ok.
Plodded on into 2014 still having pain on the wide left of the back, lower tip of rib cage where I guess the Spleen is & also pain in the front lower right rib cage . Brain Fog on and off since I took the Fluconazole in Sept 2013.
2 year old daughter has just had tonsillitis - I caught the same bug, and that pain on the wide left spleen area had gone up a notch and now I've got Hypoglycemic symptoms (shakiness after carbs, heavy night sweating) returning over the last couple of nights as the virus subsides.
Hope my worst fears aren't realised, this would be an absolute nightmare scenario for me, I decided to have children late in life (I'm 42) so I've got a 2 year old daughter and a 3 year old son and a disabled wife who all very much count on me.
Am I right to be very concerned?
If so, any advice? I feel like a rudderless Galleon bobbing on the waves.
Thanks very much for reading, peace & love to all, Tim
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Avux99
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there are a lot of people on this forum who would be better qualified to respond on the medical questions but I'll give you the benefit of my experience-I had a similar drinking background and when a random test showed high GGT levels I stopped drinking abruptly-the levels weren't seriously high-fatty liver 185. However after a few weeks I developed symptoms of fatty liver-pain in the liver error-pale stools etc. plus real problems with sleep and inability to concentrate-brain fog? having done the usual google thing-I arrived at the conclusion this was PAWS-post alcoholic withdrawal syndrome. Do a search on this forum on my post and see if it rings any bells. It took me a few weeks to clear the symptoms but it can take some people years and is a major caused of people starting drinking again. I had an ultrasound whilst I still had symptoms and it showed completely clear although the symptoms cleared up a few weeks later. Fatty liver can also exhibit symptoms with normal blood tests as I can testify. I would try a change of diet and stay off the alcohol and try and do some exercise if you can and see what happens. Take care.
Hi Tim
You are getting a lot of advice from doctors suggesting that you don't have a liver problem; you also have a challenging life with young children and a partner with disabilities - you don't mention work demands - and all this can contribute to some of the concerns you have identified, particularly mental fog. On top of these is a willingness to self medicate; you don't actually say if you are still drinking.
There is a picture emerging here: lots of demands on you and despite reassurances that there are no problems apart from those you identify, a bit of a "What about me?" theme emerging. Without a doubt, you feel the need for support in your life and some of your health concerns may disappear if you begin to address these.
Take the reassurance from doctors and try to move on. Address those things you can go towards solving (help with child care, additional support for your wife etc) and see if that makes any difference.
Best of luck.
Mike
Do you still take Alcohol at all?
I wonder what your diet is like?
Perhaps an alternate diet might help. You obviously have a fairly stressful life and stress can make for poor health.
I think the more you go round in circles worrying the more stressed you become (not good for the digestive system)
I started to leave off Coffee and tea, now I mainly drink Dandelion coffee ( Good for the liver, and the instant kind is quite good) Also I eat a mainly vegetarian diet with Porridge, and lots of Oatbran. I do not eat any processed foods, if I can help it. I have found an alteration in diet helps quite a lot. but you need to experiment with diet especially to see if there is any specific item of food which brings on that ill feeling.
One admiration I have is that you sought an alternative opinion, I think sometimes we get so desperate and we just want an answer that fits with our pain and the only way to get any progress is to keep asking your GP. With many of us it takes more than 4+ consultants to make a diagnosis before any treatment is even discussed. Just makes the individual suffer in pain for longer but better in the long run as you want to be diagnosed correctly.
I do hope someone on the forum is able to help you with managing the pain and you do not suffer for too long.
Hi there, I notice you already have had a lot of good advice. Here's my pennyworth. As your consultant says, they can only diagnose what they can see. I'd recommend a high fibre diet, cut down on processed foods and meat; we all seem to eat too much of these. I wouldn't worry about the spleen; I have an enlarged spleen (>18cm) and can see the swelling (it's at the left front of the abdomen, just under the floating ribs - not at the back) never had back pains with it. Oh, and avoid wikipedia; you'll only pick up on the horrible diseases which are usually very rare. I know, been there myself. Cut yourself some slack and try to relax. I had my two younger children at 42 and 44 when my wife developed cancer. I've brought them up on my own for nearly 10 years and the stress can lead to some strange symptoms and worries. I was treated, successfully, at 46 for hep C so there is hope if you care for yourself. Good luck, Phil
Hi Tim I went through similer scenarios with specialists even tho I'm no drinker and never have been .they reckon I now have pbc.anyway still fighting that battle.what I wanted to say is buy dr Sandra cabots love your liver book off amazon(can get a used one very cheaply)it's an interesting read .i follow the diet loosely but feel much much better for it.good luck
Hi Caz, three weeks ago I was diagnosed with PBC could you tell me if in the end you were definitely diagnosed with this I'm having so many symptoms but they say that I'm in the very beginning stages of PBC ..I'm having more tests done after my request to do so ..: i.e. MRI scan and maybe a liver biopsy as I think I'm further on than my consultants saying because of the symptoms being that of a later stage thinking myself my liver already in the stages of cirrhosis .. My symptoms are: Itching scalp..smelly urine.. smelly faeces...nausea whilst eating having an attack of being sick for the whole day...feeling bloated whilst trying to eat...dry mouth...anything fatty especially chocolate or lactose free double cream makes me feel very nauseous also... re-occurring migraine headaches.. bad tummy aches...most times backache...uncontrollable fatigue finding myself sleeping most of the time no energy to do housework or exercise and last of all my memory gets affected.. I would appreciate it if you could get back to me many thanks Donna 😬
PS ..:Tim I hope you didn't mind me coming in on your post and I hope everything is okay with you x
Hi Andeezegirl-when I originally wrote that post 3 years ago I had few if any symptoms -now 3 years later I have most of what you describe but thankfully not yet the fatigue.Im no doctor but they have confirmed mine is Pbc( with bizarre nodules on my pancreas)I too have had to request an ultrasound scan to check on those as consultant seems very dismissive on everything .im only on 450 mg urso too-cos my bloods have dropped to normal they don't think I need more.Sadly everything seems to be about money.All I can advise is push for everything you can get and join the pbc foundation(free) I wish you luck and some relief from your condition as you find your way with this.Best wishes
Hi Caz, thank you for your prompt reply... I am also on urso.. ..900mg day as unfortunately my enzyme levels in my blood count are very high😟 .. why are they holding back on scans for you I forgot to ask do you live in the UK as that's where I am from...
In answer to a couple of points. No I haven't touched a drink since 9th October 2011, when I woke up after drinking with pain on the wide left of the bottom rib cage on the edge and in the rear.
My diet was not bad before this started and is even better now. Plenty of healthy stuff, Green Tea, Veg, Chicken & Fish, Fruit, Nuts. Sure, some indulgences but generally I eat very well. Keen cyclist, try to get out and do 10 miles three times a week when I'm feeling ok (at the moment, I'm not).
Tried different things for the digestive system. Aloe Vera, Probiotics etc. No noticeable changes.
My fears are that a damaged Liver won't store Glycogen as efficently as it should do. Hence Hypoglycemia issues. Needless to say, the Brain Fog I fear is Hepatic Encephalopathy. Pain in the Spleen area especially after colds, pain in the Liver area since taking Fluconazole six months ago.
And a heavy drinking history which at its peak was around 140 units a week easily.
All seems way too coincidental to me.
Then again, Martin Lombard took the view when he wrote back to my GP that I needed Psychological intervention instead and that there was nothing wrong with the Liver.
Been back to GP this morning after waking up in a drenching nightsweat again. Going for another round of bloods (been six months since the last ones) if all comes back ok, need to discuss where we go from here.
Night sweats can be a symptom of Lymphoma. Just over a year ago I had some vague symptoms: night sweats, numbness and a gentle ache in my leg. Eventually I saw a GP and doctor in the liver clinic, neither thought anything of the symptoms I outlined. Just 3 days after the second appointment my leg ached a bit more and swelled up. Within a week I was diagnosed with non Hodgkin's lymphoma. The tumour in my abdomen was pressing on a vein and ureta causing the numbness and aches.
It is likely I guess that the scans you have had would have revealed any tumours but maybe worth the peace of mind having your gp eliminate this as a cause of your problems.
Lots of good advice here for you but I also understand it's like banging your head against a brick wall when you know that your own body just isn't the same which makes you desperate to find out the problems so you can deal with them and feel well again!!
I too have had pain under my right ribs which radiates through to the back (nothing on the left side though) for the past 3 years I have suffered pain and discomfort. My GP put it down to all sorts of problems IBS, acid reflux, Gall bladder problems too. All the relevant tests have come back normal in these specific area's all except my ultrasound scan which showed an enlarged fatty liver but my LFT are normal. I have never been a big drinker and drank even less as I got older so this hasn't been a problem in my case. I eat healthily with medium size portions. The brain fog, fatigue, nausea, sweats, pain and feeling unwell prevents me from being able to do any exercise/fitness these days but worse, I am not able to work..... Like you, I have tried all kinds of different things for the gut and tweaked my diet. I drink water and have a treat of one coffee a day. I have a good balanced diet with fruit veg with only white meat these days - even then, I try not to have too much meat.
I have recently changed GP and currently waiting for a batch of bloods and a CT scan, hopefully I will get some answers and be able to move on finally once I know what I'm dealing with.
Good luck with everything, I'm lucky in that my children are grown up and not dependant on us any longer. I dread to think what it would be like if I were in your position with a young family. Hubby is a star and can't believe the difference this illness has affected me, we have been married for a long time and life has never stopped us from doing things until now. I'm sure we will get the help we need eventually - sooner rather than later hopefully.
The one thing I notice here that you haven't tried is Gluten Free. Perhaps you have and didn't mention it. I know it can be called a fad. these days but Gluten can also be a very real problem. Our daughter was always a sickly child always tired with aches and pains. When she got around to having children these problems worsened and I was forever looking after babies while she was sick. Somebody gave her a book advocating a low starch regime and that is where the improvement started.
Our theory is that wheat has had so much re-development in the way of new breeds of seed, that the human gut has not kept up with the progress and some people just cannot deal with it. As a consequence too there are loads of GF products available in the Supermarket and, in this country at least, a proliferation of shops selling foods to Middle Eastern and Asian folks. These other dietary regimes do not depend on Wheat as we know it for their Carbs. You could give it a try for a while, it won't do you any harm and you just might feel better.
Thanks for the replies again guys, just to answer some points:
Lymphoma: during my first heavy nightsweating period two years ago just after onset of all this, I had a look at Lymphoma symptoms. Apart from the nightsweating nothing else matched and as you say there is a good chance an abdominal CT would have found something. So personally, I don't think it's Lymphoma.
Re Gluten free diet. No, I've not tried that, it's one of the few things I've not tried diet wise so could be worth a shot.
No fun at the moment. Pale stools yesterday combined with a general feeling of being unwell.
I guess this is more likely to be excess bile in the blood.
Pretty incredible how I can have all these symptoms and nothing to date standing out in bloods
20 plus years a heavy drinker (sober since Oct 2011)
Pain out on the wide left bottom edge of rib cage, especially after colds/viral infections.
Hypoglycemia/heavy nightsweats.
Enlarged Liver on CT.
Episodes of pale stools & feeling unwell simulaneously.
Terry's nails on 5 fingers.
Brain fog.
Bad reaction to Fluconazole, pain in Lower right ribs since.
Episodes of strong ammonia smelling urine, especially after high protein consumption.
Episodes of itchy legs.
And yet, all bloods come back normal. Quite amazing.
As stated, just asked for another blood run (it's been six months since my last one) if these bloods show everything still in range really don't know what I have to do to get things acknowledged as I don't think a Liver Biopsy is on the cards unless the bloods go wayward.
So SO frustrating, because all the medics think the problem is a mental one!
Of course, it COULD be something else, but at this stage I highly doubt it.
Have always been a pretty light drinker(<10 units per week) the odd heavier night at special events, but long periods of abstinence also.
Started off with fatty liver...told not to worry..has now ended up with NASH & cirrhosis.
Have enlarged spleen so similar pain across ribcage & into back...
Eating healthy diet...no alcohol for last 12 months...I find biggest thing to relieve pain is exercise. Especially on those days I feel down/tired...I really don't want to do anything but I do a good gym session & this really helps pick myself up.
Medics all think rib pain is musculo-skeletal or just psychosomatic....could be..but it still hurts!!
The doctor needs to run the correct blood test instead of just a "complete blood count" I think you have pancrease issues which is obvious from the sugar problems your having. They need to run test for the pancrese. There is specific enzyms they check like amylase and Lipase. I also think you have a fatty liver because of the constant pale stools. Buy a diabetic blood test kit and monitor your blod level. Check them first thing in the morning on empty stomach and two hours after you eat.
If your symptoms are IBS it can often be triggered by stress. The more you worry about it the worse it will be. Also it could be psychosomatic, stress making it worse. It might be beneficial to accept the psychological help. Maybe some relaxation techniques CBT or NLP is all you need to get rid of the pains. (I hope so). Stress could be making your brain foggy as well. Sorry I can't advice on any of the other symptoms. Good luck.
You are doing right by stopping drinking. I am surprised that you have not had an mri scan, I did when my liver damage was diagnosed. Ther is no point in worrying as this will not help. You can still move forward with the prospect of a liver transplant and by stopping drinking you will be in a better position to receive one.
Hi Tim its all a nightmare really,faddy diets,indifferent medical experts,the horror of internet forums!just do your best is my advice-think before you drink,AVOID salt like the plague,also red meat,take NO painkillers unless absolutely essential,and as few drugs as possible-im talking Doctors drugs in particular here. Drink plenty of water,get as much sleep as poss,and keep your chin up!best wishes.
the pain in the left sounds like Kidney, have you had them checked out?
Well I had an abdominal CT which showed kidneys were ok. But it also showed an enlarged liver.
I'm 99.9% sure it's the liver. Indeed I'm currently having a third period of what I am almost certain is Hepatic Encephalopathy, among other symptoms.
Amazing how nothing has been diagnosed yet, after nearly three years, but not a lot I can do.
Professionals seem to go off the bloods as the bottom line. If they are ok then I must be ok.
So, I'll plod on till January and the BLT roadshow and hopefully get a Fibroscan done. Been down the private consultation route 18 months ago and the advice was basically "wait and see & save your money".
Im getting an ultra sound soon, my LFT was all normal. But im passing yellow stools and they don't appear to listen to me. I have had to push for the scan. I have been drinking above limits for 10 years I should think, normally a weekend drinker though, rarley 2 days in a row.
My worry now is that despite I have quit for 4 months and never drinking again that im sat on a bomb from the past that is going to go off at anytime! Im praying the ultra sound is ok, at least that should mean I have a fair few years left in me. But if I pass that I still want a fibro scan.
Im regretting everything now, im so messed up, cant believe I was so risky with my health! I had no idea until I started looking into this.
well mine was after a very boozy weekend about 4 months ago, I believe that I had mild alcoholic hepatitis. my bile duct was fine before this. I was ill for a couple of weeks
I don't blame you for being concerned, a swollen liver is never a good thing, they havent treated you very well at all.
I have been to the doctors 6 times in the last few months and they are starting to get angry with me, they too are saying I need counselling for my anxiety etc.
my drinking was around 30-40-50 units a week. In my twenty's I was sporadic but still pretty heaving at times for a few years. im 39 now
Ultra sound was fine and the 2nd lot of blood tests. stools have settled, but i still feel a little discomfort around the gall bladder/liver, hope it clears soon
To answer your first question, yes it does sound very much like a liver problem. I have had very similar symptoms since taking a 5-week course of antifungals in Sep 2011. I had very littly knowledge of the damage it may cause and just followed a doc's prescription treating my candida-related issue.
I have since been suffering from the constant URQ pain and cramps, night chills/cramps/heavy sweating and generally feeling intoxicated and sick. Over this I had some periods of temporary relief but lately it got worse to the point that I almost can't sleep at all as I wake up every 2-3 hours with sickness/nausea/sweating.
The number of tests I have done so far is quite impressive, including fibroscan, all showing normal LFTs. Fibroscan was normal too. I have basically given up on the main stream so-called healthcare system, and now trying to find a way of detoxing the liver/guts before trying anything else on anti-candida front.
Hope this reassures you that a) you are not alone, and b) you are right in trying to solve this problem for yourself not trusting the medical 'authorities'. I am sure there is a way of sorting this out.
I am right now waiting for my latest blood toxicity/ LFT tests before embarking on a liver cleanse protocol.
Hi tommigun - are you still around on the forums ? I am having similar symptoms to you with similar test results - I'd love to know if you were able to get any answers or any effective treatment for your problem ?
I used a combination of milk thistle and artichoke extract long term i.e. 6 months with a few occasional breaks for a week. Tablets or capsules with every meal 3x daily.
As the liver/gall bladder dysfunction also relates to stress, I was advised to exercise regularly which I also took up and it helped further. I did daily or every other day jogging for 15-30 min.
Now I still have some URQ discomfort but it's not nearly as bad as it once was.
mate, so many thanks for coming online and responding. Do you mind if I shoot you an email just to expand a bit and get your thoughts? My issue stemmed from taking an herbal supplement, immediately after a few weeks, not an antifungal but the symptoms and the scan results are the same (mild elevated bil, everything else normal, normal ultrasound, normal mri, normal fibroscan, getting laughed out of every doctor's office and being told its all in my head) got pale stools, URQ pain, going on 8 months now it's really messing my life up. I sent an email to your mail.ru email address on another forum are you still using that ? if not maybe send me a private message on here if you can ? really appreciate any help or insight I can get right now
Just a thought. The liver doesnt need 'cleansing' as it does this itself. I wonder if your sickness/nausea is related to a dietary problem. You may be allergic to gluten, or something else, or have mild gastritis, or diverticulitis, or IBS, gallstones or pancreatitis. As your liver results come back ok I would be looking at other non-liver causes. Bilirubin can be mildly elevated with dehydration so depends how much fluid you had drunk before the test. Biliary dyskinesia is more related to the aforementioned gallstones etc than to liver disease.
Well, there is a school of thought that says liver can be 'damaged' by toxins which requires some repair work to be done. In the constant presence of toxins the liver is constantly under toxic stress, hence the 'cleansing' element comes in. Besides I do not have gluten allergy, diverticulitis, IBS or gallstones. I am not sure what IBS really means except for it being an umbrella term used by medical profession when they don't have a clue.
I do have a mild gastritis and duodenitis detected by gastroscopy and so-called 'moderate diffused changes in pancreas' on ultrasound.
Logically, all of my URQ pain/dyskinesia symptoms commenced after a course of antifungals (keto + fluco) which are known to cause liver damage not by themselves but through a severe herxheimers reaction (in other word dying-off fungii releasing acetylalgehyd). While and after taking that course I had LFTs done and they were normal (!) but I already had jaundice, URQ pain and pale stool. So again, I don't think one can rule out liver-related symptoms by looking at LFTs in isolation. Hope this makes sense?
Have been pondering where your quest for a diagnosis of liver disease is taking you. Are you resigned now to healing yourself or do you , like Avux want the medical profession to diagnose liver disease in a formal way? There are treatments for viral Hepatitis, and autoimmune, and conditions such as PBC, but for lifestyle liver disease there is no magic pharma pill to 'cure' the damage, only treatments to manage side effects such as HE, varices etc. Yes there are pharma meds that can damage the liver and imitate AIH (such as long term course of antibiotics or statins), but again there is no magic pill to cure the damage done by these.
A diagnosis of liver disease or at worse cirrhosis makes things like getting travel insurance difficult and expensive and life insurance nigh impossible.
A diagnosis is worthwhile if only to screen on a regular basis for varices.
What's the alternative, do nothing, then one day out of nowhere a possibility of bleeding to death when alternatively a diagnosis could have been proactively chased down & endoscopies been regularly carried out and banding performed if necessary...
Fair point about travel insurance and life insurance though Then again, a life without insurance is arguably better for the individual than no life at all
Trouble is Aux that without a diagnosis of something to monitor/screen I doubt a doctor would take a patient into their clinic. I don't think a gastro would do an endoscopy to check for varices unless cirrhosis had been diagnosed. I don't think they would do it on the basis of symptoms alone, without some test results that justified it. I have cirrhosis and I've only had one endoscopy 5 years ago, a gastro said to me I had nothing clinical that they could treat! My cirrhosis is compensated, you don't normally get the symptoms you are worried about until decompensated. I've had viral hep, autoimmune hep, cirrhosis and liver cancer. My screening/monitoring is 3 monthly blood tests, (you could probably get yearly blood tests, or maybe even 6 monthly from your GP by making an appointment yourself), and an ultrasound every 6 months - nothing more. I dont have regular endoscopies or anything extra to what I list here. You've had imaging but on a monitoring programme you wouldn't get regular imaging unless you had a diagnosis of cirrhosis. Maybe its not a liver problem but something else.
Fair points Bolly. And to be honest I would rather keep £500 in my pocket, & not bother with a private Fibroscan etc. But when you are getting unpleasant symptoms on a daily basis, especially what I very strongly suspect to be encephalopathy, with no diagnosis whatsoever, thats easier said than done. You want answers. I've got two young dependants, one with Autism & a disabled wife to think about for a start.
On the "plus" side I suppose as you touched upon it would do little harm sorting appropriate levels of life insurance now whilst all numbers and scans look ok as doctors haven't diagnosed anything apart from tentatively suggesting IBS. Like they always seem to do.
Spoke to BLT today who pretty much said what you say, ie unusual to have these symptoms whilst numbers & scans are ok, but to go ahead and have a private Fibroscan if I feel the need.
Pity they aren't doing the free Fibroscans at the roadshow this time as that would have been a nice cost free solution!
Absolutely take out some Life Insurance while you have no definite diagnosis, particularly with a family. Its something I think we should all buy as soon as we get married or have kids. The earlier you do it the cheaper it is for the same level of benefits. It's nigh impossible to get if you have to fess up to having liver disease, particularly if you have to say yes to fibrosis or cirrhosis.
Something said on another thread: ammonia levels in your blood can be tested for a diagnosis of HE. Next time you think you are having an episode of HE, could you get your ammonia levels tested?
Hi again, yes ammonia levels in blood is something I read about in another forum, the consensus seemed to be that test results can be notoriously unreliable.
I asked my GP about this over a year or so ago who answered "I don't think we can just test for Ammonia levels".
Might be an option, more research needed possibly. Thanks for the suggestion & input
Hi pniu many thanks for your message. Unfortunately, no, I am still having symptoms and they are still undiagnosed. I'm more sure than ever I have got serious Liver problems, (heavy drinking history, brain fog, low blood sugar symptoms, itchy legs, dehydration, diahorrea, pain in abdomen in the Liver Area) but bloods are pretty much still in normal range. I am still lurking on the forum, because if and when I am eventually diagnosed (its coming on 5 years now since onset of symptoms), you can rest assured I will be exploding a few myths on here about the reliability of blood tests, fibroscans, ultrasounds etc. No point in me posting on here though about my own situation because without hard evidence, you tend to get shouted down. So, Playing a waiting game essentially. Hopefully its a long wait though
Hi Avux99, My symptoms are similar to yours. My story with the doctors is similar to yours. Anyway, cut long story short, finally, just by chance I was tested for Hepatitis B and that's what it is. My diagnosis is Chronic Hepatitis B. As you know doctors don't routinely test for this. And from reading some of your chats on this forum someone did suggest to you to get tested for Hepatitis A B C etc. Please get tested, it could be the answer.
Hi. Yes I decided to head down to the local GUM clinic to get checked out for Hepatitis B & C specifically and the usual other things they check for earlier this year - I'm clear...
Hi. Thanks for the message. Still all ongoing unfortunately. Not been to GP for over a year now, it's clear they can't/won't do anything more of note unless I'm crawling through the door. At the moment, going through yet another period of low blood sugar feelings/lack of energy/tiredness. Also some noticable dehydration, especially overnight. Noticing pain in eyeball and also some leg/hand tendons - which personally I'm relating to poor blood sugar control, and in turn, Liver problems.
On the plus side, even though I'm still suffering with what I'm pretty sure are bouts of HE (these started in 2013!) the periods of it seem to be getting shorter.
Guess I'll have to wait and see if/when my eyeballs turn yellow or something.
I'm having many of the same issues as you - well, similar anyways, and in the same position with doctors opinions, etc. How can I get in touch with you to try to figure this out ? maybe two heads are better than one.
Hi there, I’m literally in the same boat as you. Idk if your still on here anymore but I’ve been searching for answers for 6 months now. I’m only 28 and fairly small (not overweight at all). I have been a heavy drinker since about 18 yrs old and got kinda bad in the last two years. In 2015 I was having serious constipation out of nowhere and different colored and shaped stools when I did pass them. Had all the tests done like blood and ultrasound that were normal (except Slightly elevated bilirubin which I only now know cuz drs never told me). To top it off I had endoscopy and colonoscopy and the final diagnosis then was IBS C. Just gave me linzess and nothing else. I was young and dumb so kept drinking since all was good but always checked back at least twice a years for bloods and once a year for ultrasound and endoscopy which are always clear except again the bilirubin which still no drs ever mentioned. Now in May after a hard night of drinking I had horrible pain in my left shoulder blade back area to the point I couldn’t move for a day( also mild pain in that area has been a constant for 5 yrs now). Also had horrible URQ pain. Got my bloods in May that were fine just bilirubin and then an ultrasound that showed mild fatty liver. Mentioned the the horrible pain and dr said fatty liver doesn’t cause pain so referred me for HIDA scan which showed 96% function of gallbladder, minor sludge, and some bile back up into the stomach. Drs said nothing and gave me an endoscopy after continued bugging about my pain. Got an endoscopy and a CT. Endoscopy said mild gastritis but no medication or home care, CT showed enlarged liver with no focal masses but a prominent Riedel’s lobe so they just wrote off it was due to the lobe. Now 3 months later my URQ pain is now my entire right side of body including right groin, thigh, butt, hip, rib area, chest and shoulder and neck. No dr has anything to say about all this but I keep pestering and finally got a fibrosure blood panel once again showing nothing, including any form of hepatitis or autoimmune hepatitis issues. Talked to a liver PA and she said I don’t need any testing as my liver enlargement is normal cuz if the lobe. I have scheduled two more appointments with new gastros for different options and I finally got approval for a fibroscan that I’ll get in a month. Like you I’m basically 90% sure this is liver as no other thing they suggest comes out. Also I have had all over body itching for two years now. I’m basically attempting the liver cirrhosis diet and have had no improvement physically but my RBC, WBC, and platelets are now starting to go down but once again since they are in normal range no dr will comment or do anything except recommend seeing a therapist and keep giving me pain meds that I don’t want. This is all absolutely awful.
Yes still here! Still undiagnosed, still having occasional hypoglycemia bouts, rarer episodes of itching on the legs, episodes of suspected HE are getting further apart. I’m equating this to some form of recovery that comes through being teetotal for almost 9 years now (in October) Put it this way, my symptoms, although still there, have definitely improved. Best advice I can give you in the absence of any formal diagnosis no matter what else you do is ditch the drinking!!
Thanks for your reply. I’m glad to hear that your improving but sad that it’s been so long with nothing to go off of. I have read through so many of these posts that I forgot if you mentioned this already or not but have you altered your diet besides the alcohol? I’ve quit drinking and for the most part try to follow a very strict diet but it’s hard to follow completely and just wondering if things can get better with still having some cheat days in the mix. I feel like such a psycho eating so clean around ppl and not having any specific diagnosis but I don’t want to risk damage Incase I am a weird person who gets cirrhosis that doesn’t fully show up on tests.
Can I also ask about your bilirubin total count? They have mentioned to me over the years that it is very slightly elevated but never told me how serious bilirubin is they inky day the AST or ALT is what counts but In my research I’ve found that bilirubin is directly related to your liver and pretty much nothing else. I’m kind of upset that no drs ever talk about that even when they know the whole purpose of my visit is about my liver.
Hi re: bilirubin, mine has always been in range. The only thing that was ever out of kilter was Hba1c, and not by lots.
Re: diet, have to say I generally eat healthily but Im not absolutely obsessive about it, especially now that I don’t drink. You have to have *some* enjoyment in a dietary sense from time to time I think as it’s good mentally for you. So yeah, generally I’ll pick low saturated fat options etc but from time to time if I want a cream cake I’ll have it! I don’t follow a specific Liver diet, though I did used to have a protein shake once a day (to help a potentially damaged Liver rebuild if possible) I don’t do that anymore though. I just drink one or two glasses of (skimmed) milk a day instead
That's terrible...I'm so sorry.. Hope things pick up for you I have an appointment with my consultant tomorrow to discuss a possible MRI scan and/or a liver biopsy if that proves to show more Deterioration he seems to think its at the very beginning stages but I have to argue that fact time will tell and I will keep you posted take care Xx
I'm not sure myself what's going on with my problems but I do have a bit of knowledge of upper GI problems from recent occurrences. What I can offer you is this:
My pain seems to be very constant and dull, whereas my partner's pain (under right/middle rib cage and radiating across the chest) was gallbadder. No stones, no polyps, just stopped working suddenly and was diagnosed by feeding her mars bars and milk whilst scanning to see if the gall bladder moved or did anything - it didn't. She had it out and has experienced a few strange stool episodes since but all is getting better.
Regarding the stools, I had a couple of very pale ones and one VERY dark one - I literally "Cr8pp3d" myself thinking the worst and came off the alcohol over two months, then jacked it in totally after xmas eve 2017.
I always thought I needed the alcohol to sleep and it turns out that I didn't have bowel movements for up to 4/5 days at a time whilst I was tapering off, but these: hollandandbarrett.com/shop/... have started things moving along nicely again. At first light brown due to high fruit and low meat intake, but now after a few days on them I'm gong twice a day and perfect colour and shape etc.
I was drinking circa 120-150 units a week for 15 years + and started to see warning signs, which led me to this position and forum. Tired as hell still but getting better day by day. I actually quite enjoyed New Year's Eve sober and New Year's Day not hung over for the first time ever!
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Like you, I have tried all kinds of different things for the gut and tweaked my diet. I drink water and have a treat of one coffee a day. I have a good balanced diet with fruit veg with only white meat these days - even then, I try not to have too much meat. 
Post Transplant Issues
right rib & right back pain- no diagnosis or answers- what to do- is it my liver?
Liver pain with clean tests and scans. 
