IBS or Liver?: I’m sorry for posting so... - British Liver Trust

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IBS or Liver?

Amethyst91
Amethyst91

I’m sorry for posting so many questions. I know I do have some health anxiety with all this and it gets the better of me a lot but trying to see if anyone has experience with these symptoms. I have been diagnosed with IBS C for about 6 years now and when it was bad I’d get feelings of some sharp pains in my upper abdomen and chest are and esophagus area along with gassy uncomfortable pain everywhere else from not being able to go to the bathroom. In the last few years I’ve gotten it under control with trulance and recently got to the point I didn’t need it anymore. Since being diagnosed with fatty liver in April the pains have slowly come back and now with constant upper right quadrant pain that can feel like a sore muscle or a sharp stabbing pain. This pain can reach my right shoulder, back, neck , and groin at times. I’ve quit drinking and done everything I can to eat better and get some mild cardio in. At the beginning of my diagnosis in May while I was still drinking and eating bad my enzymes were fine like they have always been. AST=17, ALT=17, AP = 70, bilirubin total= 1.6 ( only one that’s ever high). I’ve been monitoring my bloods this whole tome to keep an eye on my condition as I’m just sadly so convinced it’s more than fatty liver that I can reverse and more like micronodular cirrhosis. My labs have been slowly creeping up to now AST=26, ALT = 32, AP= 87, bilirubin total= 1.6, and first time getting bilirubin direct = .30. From my research this is all boarder line high levels now which is so discouraging because of all my efforts and lifestyle changes. My pain is still constant and I can’t go to the bathroom anymore and now I feel the esophageal discomfort again too. If I eat I want to throw it up, not because I feel sick but because it feels like it just sits in my chest and first go anywhere and even when I wake up to an empty stomach I feel something just sitting in my chest. My drs are not concerned because nothing is has a terrible in your face number but my physical symptoms are terrible in my face discomforts. I’m working with drs all the tome that tell me I’m fine but I feel like it’s getting worse. My ultrasound in May only noted mild fatty liver, my HIDA scan in June noted adequate homogenous flow , gallbladder at 98%, bile in my stomach, and slow biliary transit. My CT scan in June noted 20.9cm enlarged liver with Riedel’s lobe ( which made drs convinced nothing is wrong because it’s apparently natural and painless, but not paying attention to the fact that’s apparently not my case), spleen at upper limits, everything else unremarkable. Ultrasound in August only commented mild hepatomagoly and nothing else besides pancreatic tail not seen. My Fibrosis blood Penelope came back at F0 and A0 with GGT =17. My first fibroscan in September showed kpa 3.8, cap 246 and the dr said relax you can have a drink form time to time and your pain cannot in any way be my liver. Earlier this month I got another fibroscan from a GI office saying from what I saw kpa of 19 and that seems to add up more to how I feel but I am very skinny and they felt like they were digging into my ribs so idk if that one is true or not but I don’t see that dr til November 6th. My iron saturation is now at 156 and the high is 159 so I’m freaking out there,m. I’m not on blood thinners or any medication but my INR is 1.0 which I read is bad for possible blood clots. I feel like an absolute mess and like things are just slowly getting worse and no drs are looking at the little because it’s not worth their time to be preventative and they will only care once it shows I have in your face cirrhosis. Has anyone had mild labs but horrible physical symptoms like this or even feeling they had to climb Mount Everest to get a diagnosis? I’m certainly not asking for it in anyway but with all my pains and low quality of life suddenly I feel like I have micronodular cirrhosis that won’t get caught until I have a life threatening symptom and it’s too late.

46 Replies
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I completely understand. I just had an appointment with the liver doctor and he seems to believe my only issue is fatty liver despite the symptoms I am experiencing. He literally said to not imagine a disease I don't have. I get my CT from 6 weeks ago shows a diffusely low fatty liver, but I am losing hair more than usual, I am having GI issues (diarrhea) I have also had slightly low CO2 levels just slightly our of range and slightly high ketones. I haven't really been eating much over the last few weeks. There are trace amounts of bilirubin in my urine, I am worried about clotting too and my INR was also just within range. I have become slightly more pale and have lost 40 lbs in 6/7 weeks. Though I am a bigger girl and can afford to lose more weight. I am also having abdominal pain just above the belly button. He told me that everything has to do with my diabetes because my AST is 18 and ALT was 43 and bumped to 51 after my surgery to remove an ovarian cyst. Serum bilirubin is 0.3 and Albumin is 3.7 so all normal range in those regards He did order a fibro blood test and I am also getting a fibroscan but he told me that I don't have cirrhosis or liver failure and that my symptoms must be due to my newly diagnosed diabetes. And that the liver doesn't cause pain or symptoms. I guess I know nothing because he is a transplant hepatology specialist and if he truly thinks I don't have it then I must not have it. I am constantly tired and don't feel like myself at all. I was lifting heavy weights 7 weeks ago before suddenly having abdominal pain and now I feel like a different person. They have run my liver panel 5 times and my numbers do tend to stay pretty consistent but I don't know how to explain all of these symptoms. And how do I get back to normal? I think there are a few other people on the forum who are close to our age range 20/30 and have also had symptoms but all tests keep coming back as normal. I hope you find some peace and answers on this journey. I have been keeping up with your postings and I know that this must be scary due to your Mom and how she passed away. Sending light and positivity your way!

Amethyst91
Amethyst91 in reply to Laurenluv

Thank you. Yea I’ll agree besides diabetes I am almost in the same boat as you. I was also working out and trying to get in better shape before my diagnosis and sometimes I feel there’s no way I could do the things I was doing before. I lost about 15lbs when I got diagnosed due to just not feeling up to eating and I got a little better and now I’m back to not wanting to eat. I feel like I’m getting bloated and I worry about ascites because of the full indigestion feeling but I just don’t know what to do. I’ve seen two different transplant drs and one almost completely wrote me off while the other I feel is looking into a couple more things due to the fact he treated my mom and knows there’s a bit of family history there. In some ways I’ve been panicking because no one else seemed to have any similar symptoms to mine and even my cousin and friend with fatty liver have none of the same problems as me. The liver is a mysterious organ so I guess that worries me too , knowing even the best dr can be surprised by it.

I hope your results come back good on your tests. I scheduled a full body ultrasound privately just check my abdomen for changes and my thyroid since I had radiation for it but never had an ultrasound for it.

Aveeno09
Aveeno09 in reply to Laurenluv

Hi Lauren,

Omg you are literally discribing my symptoms. I have lost a lot of weight and my hair has started falling out again and the hair loss seems to have happened overnight where i woke up the next day with a bald patch on one side of my head. Blood test came back normal but i do worried they came back normal due to the fact that i am taking multivitamins with iron and b12. I had a scan in august last year which shows normal results and because i suffer from severe health anxiety the doctors are not concern about my symptoms. Feel like im crying wolf over here! I had a ct colonoscopy done 2 years ago and a flexi sigmoidscopy done last year in september and all was normal. I also had 2 endoscopy done but that was 4 years ago and i was diagnosed with a hiatus hernia. I feel like i look pale and feel very self consious atm especially since loosing my hair. Im completely lost to be honest as my gp is not concerned at all and said im loosing weight because i started smoking again after i stopped for 1.5 years.

Laurenluv
Laurenluv in reply to Aveeno09

Can you get a fibroscan done? I am not sure if you're in the UK but it might be worth it for you to go private and get the scan done for peace of mind. I am about to head to get mine done and I am also working with an Integrative medicine. YOU know your body. Don't give up on you!

Aveeno09
Aveeno09 in reply to Laurenluv

Hi Lauren, because of my health anxiety no one is taking me seriously and my husband (understandably) doesnt want me to get any more test done as i had a scan in august and all was normal he doesnt think i need one. Please could you let us know your results? I have been soo stressed out about this but trying to keep it under control. Doesnt help that i lost my job due to the current covid situation!!

This is my other account. My results were 6.0 kpa and 290 CAP.

Hi

I really feel for you. 6 years ago a consultant said it was muscular without having done scans etc. 6 years ago I finally saw a brilliant GP who referred me. We ended up going private to get a diagnosis (totally against the grain) I was diagnosed with extremely fatty liver caused by meds from my drs over the years!! My liver is that enlarged it stretches the capsule around it which causes the pain . After about 3 appointments my consultant said he was willing to take me on under NHS as he said we had spent enough money!! In the November I had a biopsy which diagnosed Nash and then early this year I had a fibroscan which diagnosed me with compensated cirrhosis. My pain is ongoing in my upper right quadrant, shoulder and between my shoulder blades. I just many other conditions which cause me 24/7 along with my cirrhosis. If you would like to pm me you are very welcome to do so.

Love and hugs Lynne xxxx ❤️🤗 🌈🌹

Laurenluv
Laurenluv in reply to Oldham65

Hi Lynne! I seem to be getting some mixed information regarding fibroscan and biopsy. My liver doctor even told me today that if my score came back high to not think it is cirrhosis because there could be inflammation that disturbs the scan. Do you have any symptoms?

Amethyst91
Amethyst91 in reply to Laurenluv

I’ve heard the same but that they will use other test results with a fibroscan to back how it’s reading. I feel like 18kpa is more accurate to how I feel but most things say that’s most likely due to inflammation or the tech not being very good and I don’t think they were. They say it’s very hard to get a false negative and the girl was the Hepatologist assistant so I trust she knew what she was doing but that one doesn’t match how I feel.

Laurenluv
Laurenluv in reply to Amethyst91

I have been seeing an integrative medicine doctor as well and he wants me to get tested for SIBO. Have you heard about it? Apparently it can have some similar effects in regards to IBS symptoms and malabsorption. There are two main types and one causes diarrhea and the other causes constipation.

Amethyst91
Amethyst91 in reply to Laurenluv

I think I’ve seen it around or possibly had it mentioned back in 2015 when they diagnosed ibs but I don’t know much about it. I want to say I had a breath test or maybe I had one scheduled but never did it due to being poor at the time and young and not wanting to know as long as I wasn’t dying. I suffer from ibs c so I have days to weeks of being backed up and not being able to go but when I do go it’s mixed between hard and diuretic. Since quitting alcohol and eating better I’m a bit more normal now just still have bouts of bad cramping and not being able to go. I think even when I was doing in that area the ct scan in June still showed some back up. Sorry it it’s all TMI lol, I learned to not be so shy in that area after dealing with it for 5 years.

Laurenluv
Laurenluv in reply to Amethyst91

Not TMI at all. I think if you felt inclined to also seek treatment with an integrative medicine doctor. They are willing to take a much deeper look into your labs and can help you find safe and healthy ways to manage symptoms. My niece had a skin issue and traditional doctors couldn't figure it out. She went to an integrative medicine doctor and has seen a lot of improvement.

My doctor went over my labs with me and has ordered other labs in order for us to get a clearer picture on whats going on with my body overall. Have you been tested for b12, vit d etc?

Amethyst91
Amethyst91 in reply to Laurenluv

I’m little lost integrative medicine. I have been checked for vitamin d almost my whole history I’ve been deficient and in May she checked b12. I’ve been taking 3 caps of vitamin d a day and I’m still at the low end but at least low end of normal now. My b12 wasn’t out of range but getting to the low side so she recommended taking that as well especially since my thyroid is off. I put taking those off until August after my radio iodine therapy left me feeling a bit weird. I’ve never had my iron checked until August 27 and it was 140 while taking the b12 for maybe 2 weeks and drs not concerned cuz still normal but high normal. Last week I had it checked again and it was 156 when 159 is the high max so I’m freaked out and after doing some research I’m wondering if taking the b12 is causing the high iron especially since I wasn’t necessarily deficient before. Still haven’t talked to a dr yet about but I’m thinking of backing off on that to see if iron gets better. I guess the good news is my ferritin is 48 which I don’t think is bad.

Laurenluv
Laurenluv in reply to Amethyst91

Do you mean lost like not knowing what it is? It's a naturopath or specialized chiropractor who looks at you on a holistic level. They don't just see your symptoms, they see you the person. They will do full bloods and stool sample etc. Then they work with you using healthy supplements and diet in order to treat you. If there is a more serious or severe issue they discover then they refer you to a specialist. Sometimes they catch things traditional doctors don't because of the extensive testing. They don't just check to see if your within the range or even slightly "close" they work to find out how all of your labs look together to find any imbalances.

Amethyst91
Amethyst91 in reply to Laurenluv

Oh dang I think I need that. I see a chiropractor now for all the pains since family and drs swear it’s all muscular and I’ll admit it takes the edge off but I know deep down it’s more than that. Sadly I’m still very convinced I have cirrhosis, but if anyone is willing to look I’m definitely willing to try it. Do I have a dr refer me or how do I look?

Laurenluv
Laurenluv in reply to Amethyst91

I would use google or yelp. Search for integrative medicine near me and see what the reviews say.

Laurenluv
Laurenluv in reply to Laurenluv

Isn't it frustrating being in your body, the place YOU have lived your whole life, and know something is wrong, and everyone else is trying to tell you that you're crazy?

Amethyst91
Amethyst91 in reply to Laurenluv

It’s very frustrating, especially because I do have some pretty clear evidence to back it all but it’s just not that obvious so they don’t care. I honestly don’t get this and when I see a nee dr they add a couple more new tests and al I can think is why couldn’t get these after the diagnosis of fatty liver to rule out everything else right then and there?? Why have I had to fight so hard for this? What is wrong with the health care system to let things get so bad before caring?

Laurenluv
Laurenluv in reply to Amethyst91

It's because you and I live in America, unfortunately.

Amethyst91
Amethyst91 in reply to Laurenluv

Ugh I know!

What part are you from? I’m close to LA and went to the major hospital out there, Cedar Siani, where very high profile ppl go and I was still turned away like it’s nothing. I just can’t believe it all. I do trust my new Hepatologist as he’s one of the top transplant drs at loma Linda and saw my mom because when it became bad for her she was in the worst shape most drs had ever seen in their careers but even he said he’d schedule me for a fibroscan at the end of the year “that should make me feel better.”

I’ve now had two very conflicting ones and I just don’t feel any better about my situation. I definitely don’t want the process of a biopsy but I feel like I need one 😞

Laurenluv
Laurenluv in reply to Amethyst91

I am from the midwest. Also a big city girl. Maybe try the integrative medicine doctor before biopsy?

Amethyst91
Amethyst91 in reply to Laurenluv

I’ll have to see. Do they cost a lot since it’s not really with insurance or is it with insurance?

Laurenluv
Laurenluv in reply to Amethyst91

Mine takes insurance.

Oldham65
Oldham65 in reply to Amethyst91

Hi

My GP referred me. I've set a detailed response further up.

Pm me anytime xxxx💜♥️

Oldham65
Oldham65 in reply to Laurenluv

My liver nurse and consultant both said it was compensated cirrhosis

I have pain in my upper right quadrant, shoulder and between shoulder blades. The pain is like my gall stones pain 35 years ago!!

Love and hugs Lynne xxxx ❤️🤗 t

Laurenluv
Laurenluv in reply to Oldham65

It's crazy to me that you can remember pain you experienced that long ago! I wasn't even born yet! That must have been/is some hellish pain.

Oldham65
Oldham65 in reply to Laurenluv

It certainly is!!! My pain has been and still is ongoing hense why I only have one hour or less sleep per night . It should say 4 years ago I finally saw a brilliant GP. It has been going on since 2014 when that consultant said it was muscular

It was 2 years later when I was diagnosed with fatty liver.. My consultant said there are no nerves in the liver but there are nerves in the Glisson's capsule . My liver is so fatty and enlarged it stretches the capsule hence the pain.

I had my gall bladder out in October 1985!!

I'm in 24/7 pain all over my body due to my many conditions.

Laurenluv
Laurenluv in reply to Oldham65

I have never given birth so I am afraid our pain scales would not align at all. Mothers are truly powerful beings!

Oldham65
Oldham65 in reply to Laurenluv

My pain is worse than when I broke my wrist. Xxxx

Amethyst91
Amethyst91 in reply to Oldham65

Oldham65

Can I ask if your pain ever goes down to your lower back and or groin area? I’ve read weak livers can cause this bit of course any health professional swears it’s impossible.

My pain is a constant dull pain that never really goes away just moves up and down in severity. Always my whole right rib cage area sometimes throbbing like the liver is trying to push itself out, sometimes sharp and stabbing, sometimes like I did an intense work out but only on the right side. The groin pain is on the right side and not always there but when it is it’s like a pulled muscle at the groin and thigh and my low back is constant dull ache just on the right side only. Sometimes I get pain that feels like a tearing pain on the right between the rib cage and hip.

Oldham65
Oldham65 in reply to Amethyst91

Yes, I do. I have severe itching and my hands go red and blotchy . Xxxx💜❤️

Amethyst91
Amethyst91 in reply to Oldham65

I have all over body itching that isn’t crazy but sometimes can be. I e brought this up for years but no dr pays attention. I’ve never had the red palms though my hands do get blotchy that I assume is due to me being incredibly pale naturally.

I’m so scared. Idk how they can ignore all these signs I’ve been throwing at them for so long. I’m so tired of them acting like it’s nothing and I’m so tired of my friends and family thinking I over react about it all.

Oldham65
Oldham65 in reply to Amethyst91

You must be exhausted and you definitely aren't over reacting!! Could you change dr's surgery and try one that has been suggested to you. I'm lucky to have a great support network of family and friends and of course people in health unlocked who I'm now friends with.

Take care and stay safe

Love and hugs Lynne xxxx ❤️🌈💜

Amethyst91
Amethyst91 in reply to Oldham65

I thankfully have a very wonder GP assistant who will listen to me and do everything she can for me, sadly she’s not a gastro dr and her knowledge and abilities are limited. In my last appointment she said if I could get the name of liver tests (fibrosure) I want done then she will write them for me every 3 months to track my progress even though it’s not really her field to make those orders. I think I have finally learned all the tests I need to have done so next month when I see her I can write them out for her. I’m terrified of the outcome of my bloods I will do this week along with the fibroscan to come at the end of the year and the possibility of getting a biopsy. Ifk how I would tell my dad I suffer from the same illness he had to watch my mom die from, especially so soon after her passing. I feel like it will destroy him more than myself. My hopes are of this is really cirrhosis then I hope for it to be early enough that strict changes can reverse it as I’ve read it’s kind of possible now, though I think mostly for hep c not really alcohol or genetic. I don’t think I have ascites due to my last tests but the last few days I’ve felt so full of acid or bile, not nauseated but good just won’t digest. I’m a bit bloated but idk if that’s Ibs or not. Do you have feelings of fullness and acid for weeks or so at a time? I can go a month or so good then get struck again. I hope it goes away again and doesn’t become permanent as I thought I was ok a few times and took Tylenol when I had bad headaches.

Oldham65
Oldham65 in reply to Amethyst91

Good morning

I get fullness. I had an operation called fundoplication nearly 5 years ago because of a hiatus hernia and muscles don't work in oesophagus. No more bloating because of hernia but muscles in oesophagus still don't work,I think that is for life. I have to have a cold drink with anything I eat. I do have the fullness but not acid , luckily I still have the same GP as I had 4 years ago!! She is brilliant with everything!! She pushed for me to have telephone consultation which came through very quickly. He put me straight on to waiting list for the op as he remembered me!! He said there's no point in you coming to 3-4 clinics when I know what operation is needed.

Sorry for going on

Love and hugs Lynne xxxx ❤️🌈💜

Amethyst91
Amethyst91 in reply to Oldham65

Thank you. It helps to get as much information as I as can especially since it seems I’m mostly diagnosing myself or needing to tell drs what tests I need for the diagnosis. Do you think the fullness is liver related or just hiatus hernia? I do think that sphincter doesn’t necessarily work in my esophagus so it’s been suggested I might have that.

Hey! It’s Laurenluv. Couldn’t sign onto my account since I’m on mobile so made a new one. Just had fibroscan. 6.0kpa and 290 CAP.

Did they go over it with you? I think that’s still I pretty good kpa since it’s under 7. Do they suspect any fibrosis or inflammation, or Are they planning to biopsy or just go with that test only?

Sorry I’m asking so many questions, I hope your feeling alright. Your username hits hard.

The doctor is going to go over it with me next week but the tech said I shouldn’t worry about anything. I’m doing more blood work on Friday to look at other things that might be the cause of the issues I am having. It’s just crazy to me to be having all of these symptoms and tests are like liver is fine! Did they look at your pancreas? They first ran my lipase when I first started feeling unwell but there can sometimes be a delay in the rise. We might be looking at sehcat scan for bile movement and scan on pancreas.

When they see my pancreas in ct they say it’s fine and my levels are fine. I did have a HIDA scan in June that showed some back up of bile in my stomach and I think I’ve been having a bad bile acid attack the last few days. They said there’s nothing f I can really do about it but it burns my chest so bad and my spleen and liver area feel more irritated and I’m not nauseated but I just want to throw up whatever is sitting in there. What is a sechat scan for?

You just explained my exact symptoms. What is going on with us?!

Laurenluv
Laurenluv in reply to Amethyst91

Sehcat scan allows them to see the flow of your bile through your system.

Amethyst91
Amethyst91 in reply to Laurenluv

Might need to request one of those since bile is a known issue for me

It’s just so much, it’s exhausting sometimes 😫

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