Hello looking for help with a painful liver - PBC Foundation

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Hello looking for help with a painful liver

kizzy40 profile image
18 Replies

I'll try be brief, I'm an ex alcoholic quit 2012 liver levels dropped to almost normal...and then began to rise.

I have bad flank pain for which I took painkillers and it worsened gallstones were suspected and scanned for one was found as was an enlarged spleen but liver/kidneys normal (april 13).

Gall surgeon said flank pain not indicative of gall pain but removed it anyway (dec 13)

Still in pain was given omeprazole ( pain worsened) scanned again right kidney is said to 'appear duplex' very confused at this point. Bloods find borderline ferritin, anti smooth muscle antibodies and raised IgA referred to hepatology. The 5 min consultation concluded 'fatty liver', was confirmed by letter suggesting dietary advice ( not included) and follow up in 6 months.

ALT at the moment is 53, tinnitus, dry eyes, restricted movement in flank due to inflammation, painful joints, and night sweats.

I'm 42 overweight but have lost 3st in 2yrs in Leeds UK, has anyone any help/advice please?

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kizzy40
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18 Replies
Wendy29 profile image
Wendy29

Hi kizzy40 - well done for giving up alcohol - I don't drink alcohol but it was never a problem for me as I wasn't a drinker anyway, but I realise its so hard for people who are addicted. Also you lost a good amount of weight. My advice is to seek another hepatologist who will give you more than five minutes - in the meantime follow low fat diet with plenty of green vegetables, and drink lots and lots of water - research liver health diet. Wish you well.

I dont know if it will be of any help at all in cases where alcohol may have damaged the liver, or actually even in other cases. But I am reading a book by Andreas Morritz about liver flushing at the moment. He suggests that gallstones may also collect in the liver but as they may not be mineral in origin are not usually seen on scans.

Suggestions that liver flushing can remove liver gallstones and thus improve liver function.

Might be worth googling

Hi There

How did they come to the conclusion its fatty liver? Did you have an ultrasound or a biopsy of your Liver?

How long were you drinking for and how much? Are you over weight? An enlarged spleen is a little alarming, did anyone mention portal hypertension?

SheepJane profile image
SheepJane

You clearly need to see someone to find out why you are in so much pain. At a minimum they should be doing an ultrasound of your liver. You say you are in Leeds and there is a big liver unit at Leeds Teaching Hospital - so there are specialists where you live. Have you tried calling the British Liver Trust support line to see if they can help you get to see a good specialist? There is a freephone number it is 0800 6527330.

Good luck

Hello kizzy40.

I have read your post and not sure exactly what you are asking, think just painful liver?

Do you have diagnosed PBC?

PBC is normally diagnosed with the AMA - anti-mitonchondria antibodies.

Apparently with PBC one can experience liver pain from the inflammation (currently I do not have any such thing - I'm plagued with the itch).

kizzy40 profile image
kizzy40

Thankyou so much everyone, I was drinking really heavily for 15yrs and are still around 4st overweight but it's coming off well now. Will look into the liver flushing thank you sounds very beneficial, I've not had a biopsy and no portal hypertention has been mentioned. Had a few ultrasounds and bloods before and after the gall bladder surgery then this hepatology appointment that's left me more confused than ever as he stated I had had a fibroscan, I have looked at this procedure and know I have not had one and he couldn't tell me the result. There's no point raising it with the doctor as he says 'it's beyond his area of expertise' so have to wait the 6 months for follow up as it stands and quite frankly that's scary. Thanks for the support line number too, have appointment with doc tomorrow for results of most recent scan so will raise these issues highlighted. I've seen the term GGT a lot in relation to liver bloods on here but as far as I know I've not had this sould I ask for it?

Again many thanks.

kizzy40 profile image
kizzy40

All I have for sure is fatty liver at the moment, will ask about AMA too thankyou. That's what I'm worried about inflammation in case it causes damage to other areas heart especially.

in reply tokizzy40

alot complain about fatty liver being painful. but surely it should be resolving by now? did the ultrasound show fat? sometimes an ultrasound wont show mild fat . you need a Fibroscan to the fuller picture

in reply tokizzy40

forgot to add GGT is an extra,it mainly used to show inflammation due to alcohol and blockages i think. it should have been done really

kizzy40 profile image
kizzy40

No it didn't it appeared normal but it seems to swell from time to time and just feels really 'big' somehow, the hep could feel it. Will push for the results of the fibroscan that I can't even remember having.. if I have had one it was before my gall bladder removal so will be annoyed if there was something showing on it.

kizzy40 profile image
kizzy40

I will definitely ask for that as have been saying for months and months it feels swollen and sore, I can't even turn over in bed sometimes like there's a breeze block in my side. Thank you for the advice ralph.

Also take a look at the sheets that accompany your various meds. Many meds can impact on the liver. If you find anything in this category have a chat with your support team to see if there may be any substitutes.

Try to eat a low inflammatory diet which often means restricting sugar wheat and dairy. Watch for any positive or negative to judge what may bring benefits.

Beetroot juice is often said to be beneficial

kizzy40 profile image
kizzy40

Thankyou I love beetroot and have started eating it regularly, I also dilute a little apple cider vinegar in water a couple of times a week. I was taking codine, ibuprofen, paracetamol, omeprazole and felt really lousy so thought sod it and binned the lot! Since then I've taken b vits, milk thistle, licorice root (occasionally), green tea, ginger beer ( from a ginger beer plant) and kefir.

I don't have a support team (irl) so just winging it atm, thank you for your advice it means a lot so glad I found this site have found so much interesting information to help me already.

poing profile image
poing

Gluten sensitivity and celiac disease can manifest as liver damage. For me, pain in the liver and gall bladder area is one of the signs that I've been glutened. I've had my liver and gall bladder scanned three times over as many years and they can't find any problems, so I just don't eat gluten and that helps enormously.

Your raised IgA says your immune system is busy doing something that it probably shouldn't be. You've got some auto-antibodies, so we know your immune system is not a happy bunny. Gluten always seems to worsen autoimmune disease, so you could try cutting it out to see if it helps in your case. Even better, get the blood tests for celiac disease first, just to be sure. You can't take the test unless you're eating gluten.

My liver enzymes are fine and not raised... they actually showed up low after a gluten challenge. But the liver enzyme test is a blunt tool. When liver cells are damaged they release their enzymes, some cells die off naturally anyway. But what if you can't make enough of those enzymes in the first place? The two effects can cancel each other out, or mask what's going on.

When I discovered that I was gluten sensitive, I was low on several minerals, which are needed by the liver to function. Zinc was a biggie for me. You need zinc-based enzymes to metabolise alcohol in the liver, so with your history you could well be depleted, and recovery from long-term depletion seems difficult. I don't drink much at all, but there was a point that I couldn't even if I wanted to because it made me feel so ill.

I think omeprazole is the last thing you need. It reduces stomach acid, and you need stomach acid to digest food properly and release minerals from your food so you can absorb them. Long term use of omeprazole leads to mineral deficiencies across the board. Your low ferritin tells us that your iron levels are already depleted, on top of likely problems with zinc.

Choline depletion may worsen fatty liver. The best sources are liver and eggs. Perhaps it is all in my head, but I feel a definite improvement in my sense of well-being when I eat liver. Have a read of this: wholehealthsource.blogspot....

I probably sound like one of those people who thinks everyone has the same problem that they do. I'm not saying that. I am just trying to suggest a few simple options that are open to you to investigate when conventional medicine has run its course, and failed to come up with the answers. They might help, they might not. Either way, good luck!

kizzy40 profile image
kizzy40

Thankyou poing that makes so much sense, I've had the test as my sister was diagnosed coeliac 2yrs ago at 53 but mine came back negative, I'm beginning to wish they would just do a biopsy to rule everything out once and for all :/

kizzy40 profile image
kizzy40

Short update from doctors app yesterday asked if I had had a GGT and I had (18 months ago) was 85, he said that was slightly raised but if the hepatologist thought it was fine and said fatty liver then? I stated I wasn't happy, reluctantly he agreed to repeat in a month.

Alley27 profile image
Alley27

Hi, I would also ask for second opinion and push for a liver biopsy to actually prove what your diagnosis is.

xxconniefused

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