I was diagnosed with PBC and resulting cirrhosis in early 2013. Been doing really well with normal blood tests for many years now, knock on wood.
It's disturbing me that I seem to be developing many lipomas, mostly in my arms but some in my chest too. I must have about 15 of them by now...at least that's how many I can actually feel. I asked my gastroenterologist if this was related to my PBC but he said no.
It's my understanding that with liver disease, we can't handle saturated fats as we should so I don't think it's much of a stretch that we'd develop fatty tumors as a result. I've searched online (here included) but haven't seen any information that these conditions are linked. Still I wonder though...
I'd be interested to hear your thoughts on this or if anybody else is experiencing this.
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islandanonymous
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I think you are correct with your assumption, I believe lipomas are considered as something that can be common in people with fatty livers.
It is rather interesting, I always think the body tries to heal or help itself, and I wonder if lipomas are a way the body tries to distance fat from the liver??
15 does seem a lot. But then I guess if it IS our bodies way of getting fat away from the liver, then, the more, the better... although, it would be nice if they were easier to remove.
Thanks for your reply, Dave. You're pretty much summed up my take on it, that it's the liver's way of dealing with the problem. I had one removed decades ago but they don't do that anymore. Then for maybe 10 years I've only had one on my arm. However in the past year small ones seem to be springing up every which way.
I forgot to mention that I was told I also have NAFLD after my recent fibroscan. However an ultrasound done two months before didn't show NAFLD at all. Now I'm wondering if the increase in lipomas may be related to that.
They're annoying but if it means that it's helping my liver, I'm all for it!
Yes I can move them. They aren't painful. They aren't hard, more like a gel.
However I also have yet one more thing that is different from the rest. After I had a blood test about 8 months ago I developed a large swelling (about 2" in diameter) close to the vein. It doesn't really move but it isn't hard. I saw a new GP about it. He didn't know what it was. Had an ultrasound and although there's a very small lipoma within it and it's surrounded by more lipomas, it isn't actually a lipoma. My GP told me to just let him know if it ever starts to hurt.
I'm a little freaked out by this because I had a friend die from a sarcoma on his leg.
Anyway, it seems like it's going to have to remain a mystery what it may be. It isn't a lipoma though.
A lipoma within something surrounded by lipomas... that is something I have never heard before... I wonder why your GP never suggested a biopsy to see what it is? I don't think I could stand the anxiety of not knowing (I'm the official world number one worrier ) that would definitely freak me out.
Also I wonder about this one occuring after a blood test. I'm probably wrong but I'd guess the fat is carried in the blood and deposited in the muscle and then forms a lipoma just under the skin(I'm not medically trained or google I am just assuming) but if that is the case.... I wonder if there would be a way of "filtering" out the fat during a dialysis type procedure?
The more people share on this forum, the more unusual and interesting things come to light.
The human body is a complex and incredibly wonderful thing... it is far more intelligent than any computer and seems to work on automatic with a little input from us occasionally
I'm pretty sure it's something my GP never heard of either! It wasn't very reassuring that he asked to feel another lipoma for comparison. He should know how they feel, right? He didn't seem to know though. Both my GP and my enterologist are frustratingly reticent to give definitive answers or tests. In fact, I feel the reason I'm in this position in the first place was because another GP didn't even tell me that my liver enzymes were elevated for over a year when I was seeing him to try to get to the bottom of another problem (diagnosed as benign fasciculation syndrome finally)...by the time a nurse told me that I could check my blood test results online and I insisted on being sent to a specialist, I was diagnosed with cirrhosis and PBC.
I was checking out the link MINTVCX above and came across another link that says liposuction CAN be used to remove lipomas. So there ya go!
I'm also fascinated by the complexity of our bodies. I've managed to come up with many mysterious things over the years. As I mentioned somewhere, I've also been misdiagnosed with severe diseases quite a few times. Sometimes I've wondered if I've actually cured myself of things however a few of them apparently aren't reversible so it all remains a mystery.
Doctors are trained to compare. We are all the same while also being unique. I have a bump on my foot, when I was young, my doctor was concerned when he saw it, but when I removed my other sock and had an identical bump on that foot, it was normal for me. I'm sure he was just checking the density of it compared to others on your body (which may be a different density on other peoples bodies).
In fact where I now live in this part of England, the doctors often write NFN on patients notes, which means Normal For Norfolk... I guess some things here might be more unusual elsewhere in the country
And if the fat is carried in the bloodstream then maybe it got deposited at the site of the blood test when the vein was weakened (opened) by the needle taking the bloods. It is quite puzzling, possibly coincidental.
I hope you find out, it could be a little blood or serum that formed a blister above the vein allowing lipomas to latch on to it. But I'd definitely want to know.
I forgot to mention another thing...it was slightly red at first, even a little warm, so I guess it started as some kind of infection. But it has never gone away, which makes me wonder...
Well I think there is no clear answer. My hepatologist diagnosed lipomas for me but I am not sure if it was correct. She said it strange because I had normal triglycerides.
"A lipoma is a benign tumor made of fat tissue.
Most are less than 5 cm (2.0 in) in size.[2] Common locations include upper back, shoulders, and abdomen.
I meant to say that although I was recently diagnosed with NAFLD, my BMI is in the normal range. So if I actually have NAFLD (which I kind of doubt despite the recent diagnosis), it is lean NAFLD. I eat a very healthy diet, always have, and get a lot of exercise.
It is a pity, nobody has found a way to "dissolve" them and remove them using a syringe.
I have read some very interesting papers regarding fatty liver disease and the research looks very promising. There often appears little breakthroughs but the trouble is, how long does it take for these breakthroughs to get trials, tests, government approved and into production?
Yes, you would think something like liposuction would work.
I'm glad to hear that you've found some interesting papers regarding fatty liver disease. If I actually have it (sorry, but I've been misdiagnosed a few times with serious diseases so I have my doubts...my BMI is average, I eat a very healthy diet, and I get a lot of exercise).
Hello island I was just diagnosed with cirrhosis and seeing how you have had it a while and seem to have been doing well do you mind sharing your original kpa and meld?
No problem...I have never been told a MELD score. My first kpa score was 35 and both my liver and spleen were enlarged at first. I had been taking something called Jin Bu Huan tablets for insomnia for about 10 years until I eventually discovered that it had been banned in Canada because it had been linked to liver, nerve, and brain damage. I believe that's what kicked off my PBC and once I stopped taking it and started on Urso, my bloodwork and tests improved.
My kpa continued to go down...I was tested a year after that, and it was down to 14.3. Got tested every two years after that, it continued to go down to 10.5 in 2018. I skipped the fibroscan in 2020 due to covid. My last fibroscan was this past fall and the score had gone up to 15.9. I still doubt its accuracy but that's just me. The test was rushed.
That’s great news! I agree about the test. It was 5 minutes with 5 light thuds to my ribs and that’s accurate? I have my doubts. I asked for a biopsy and was denied.
I think they've pretty much backed off doing biopsies these days. I don't want one and my doc didn't suggest one. I'll have another fibroscan next year and we'll see...
To be honest, I would not want a biopsy unless there was a problem that could not be identified any other way then I would, if my GE suggested it.
My diagnosis was made from blood tests and the fibroscan was merely to see whether my liver was at the cirrhosis or fibrosis stage. Liver disease is cruel because it can get to a serious stage and we feel perfectly well, unaware of what has happened. It is only when we come to places like this forum and see what other members have kindly taken the time to share, ascites, drains, hernias and other related problems that we see just why we need to start taking care even if we do feel well.
Looking at Islandanonymous's figures they shows exactly what hard work (exercise) and healthy eating can accomplish kPa down from 35 to 10.5 is a great achievement. 👏👏
Until I had my first consultation, I'd never even thought about liver disease. But since then, I do come across medical papers, journals online etc... and at times the terminology is quite heavy reading ...but, it shows there appears to be a lot of research related to liver disease at present.
A few nights ago I was reading about tests done on mice and the trials showed complete success against fatty liver cells. (I'm not getting excited yet, I like cheese but I'm no mouse 🐭 ) That might be years from making it to production (if at all) but the very fact that research like this is happening means, we have hope, we need to exercise, we need to stay strict with our diets and we need to be here when those treatments arrive.
I wish I had discovered this forum back when I was first diagnosed but unfortunately I only found it recently. It has provided me with far more information than I ever got from a doctor. My gastroenterologist openly admits that much of this is a mystery, apparently especially with PBC...it can be frustrating at times not to get any definite answers from him but it also leaves me open to imagine the best outcome, which I do think helps because it keeps anxiety and stress away to a large degree. But that doesn't mean I just coast along because I agree, it's very important to stay as active as you can manage and to keep on track with a good diet.
I haven't read much scientific research so I wouldn't know about any new developments. It's all out of my hands so I'll focus on what I can do to help myself.
BTW I was kind of a mess when I was first diagnosed...often exhausted, had brain fog pretty badly, and I think I did develop some slight nerve damage because of that banned "herbal" I was taking (Jin Bu Juan). I didn't know it had been banned, of course. Which is another thing...we have to be super careful about what we put into our bodies even if we're told it will do us good. Another herbalist who knows about my condition once recommended I take some concoction that she sold. I specifically asked her if it would be ok for my liver and she said yes. Iwas tempted but I researched it first and discovered that one of the ingredients was implicated in liver damage (can't remember but I think it was St. John's Wort). Since that time my doctor told me to discuss these things with him first. (Hard to do when I was only seeing him every two years!)
I think you would make a good case study. your results seem to conflict or even contradict at times... it is something of an anomaly which could possibly explain why your GE is somewhat mystified, because the data is not as expected.
I must say, you have a very commendable positive attitude and I am a great believer that a strong healthy mind will help it's body heal and recover faster, and I'm sure that your strength of mind helped you get from a brain fogged exhausted mess to the healthier you today.
I'm a case alright, lol! My GE is always hard to nail down on anything and gives me a lot of leeway...maybe because he knows I want to do my best to take care of my health. I also pepper him with questions which probably put him in a bad position sometimes because he just doesn't know the answers. At least he tells me when he doesn't know.
Thanks for the compliment about my positiveyet attitude. I do try! The thing is, other than the occasional fatigue (which seems to happen less and less often and isn't severe at all), I haven't had to put up with all the systems that cirrhosis can bring. Knock on wood. So it isn't too hard to keep a positive attitude.
I hope you're having a good day! I've enjoyed "talking" with you. Happy holidays!
And Happy holidays to you too. My gaming mate online is also Canadian (I believe I read you were Canadian in one of your previous threads). Although he lives in Bend Oregon now.
It's been quite lovely reading your journey, it is quite interesting and it makes me wonder what all these billions of dollars of supplements being sold worldwide are actually doing to people?
Yes, I think the supplements are likely a huge problem. People can get away with saying just about anything, claiming miraculous results, and sometimes these things not only don't help, they do harm. Even herbals.
I was recently diagnosed possibly with Pbc/ aih overlap based on the antibodies found, but my tests are showing only slightly elevated ast and alt. I just came from gastro appointment and he confirmed that most probably I ll need a biopsy with a hepatologist next month., as he cannot point the direct diagnosis.
It was so encouraging to read about your Fibroscan score decrease!! Great job!!
Mine was 24, 7 in May, and MRI results are pointing towards cirrhosis.
Gastro whom I saw today kind of confirmed that the cirrhosis can not be improved, only stabilized.
Since February I am on a very strict diet and exercises.
Have you done anything else to have your score improved so much?
Hi Elena, just wondering how you're doing. My last Fibroscan score last fall showed an increase but I have my doubts about the accuracy somehow. The test was very rushed by someone who was filling in. So instead of seeing my gastroenterologist in two years he asked me to come back for another scan this fall. I'm feeling better than ever though, and all my bloodwork is still completely normal and has remained that way for years now. I do believe you can definitely remain stable. I'm a big believer in a healthy diet and lots of exercise. I hope you are well! Are you in BC?
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