Well guys, I’m at a loss of what to do next. My albumin, creantine, calcium, and potassium were all pretty low again for a little while and then went back to normal. The RUQ pain under my ribs has been persistent the last month even with me eating right and exercising almost daily. Saw my primary doctor and the gastroenterologist who refuse to believe I have anything more than a basic fatty liver. They say it isn’t possible that I have inflammation with normal liver enzymes and refuse to order any more tests in regards to that. They think the pain is unrelated and say you don’t feel pain with the liver. They are going to do a endoscopy to rule out any stomach issues, but from what I’ve read it all points to liver. They found a small module in my right lung that doubled in size from 5mm to 10mm and I have swollen mesentric lymph nodes in my stomach. I feel like everything is coming from the liver and am terrified they are dismissing it too soon. 
Defeated. : Well guys, I’m at a loss of... - British Liver Trust
Defeated.
They are correct about the enzymes. There cant be liver inflammation with all the enzymes in normal range. But many people with fatty liver say they feel pain around the liver area. The nodule in your lung and lymph nodes in the stomach would be more of a worry to me. Especially if the nodule is increasing in size. Keep in mind some of your electrolytes being low could be related to those issues as well. Not necessarily the liver. The liver issue could be secondary.
Thanks Phoenix! You’ve really been such a blessing and so helpful. I guess I just have a lot of unanswered questions. I’ve been trying to find a hepatologist but it seems like everyone I find is just a gastro doc that also knows a little about the liver. I don’t understand why my albumin is going so low and my ankles are swelling or why my electrolytes are all over the place. Those things, with the pain and the fact that the ER doctor who initially found the fatty liver saying he thought I had NASH makes me feel like there was a reason he said that. However, he didn’t put any notes in my scan about inflammation or enlargement.
Your very welcome love. I'm very much wanting to help you in anyway to figure this all out. I hear you on the doctor situation. Most gastros have limited knowledge on the liver specifically. (My doctor was also a young flashy asshole that spent more time telling me his accomplishments than listening to me. He also never knew who I was when I came in even though I'd seen him 5 times and I'm not exactly indistinct looking.) 🙄🙄
It seems there is more of those doctors than hepatologists. But my oh my was it a world of difference when I finally got a hepatologist.
Can you ask the doctor why he thought that it was NASH? I mean without the enzymes ever being elevated it cant be but it may ease your mind to know why he though it?
Keep posting and I'll keep answering as best as possible 😊
I honestly think he just said it because I was there due to the pain. When I went in, I thought it was going to be my gallbladder needing removed. 😂
That's quite possibly why he said it. But let's take small victories too right. There is no inflamattion or scarring of note, that is a great thing! Did they comment at all on the lung nodule?
They don’t seem concerned honestly, lol. The cancer board said they thought that maybe it was just inflamed and hadn’t really grown so they thought we could wait six months and do another CT. My primary doctor didn’t like that so she referred me to pulmonologist anyway. I see him March 6th. I wish you were allowed to share charts on here because if you could see all my tests it’s SO bizarre. And it all started happening at once so there’s clearly an issue. I’ve even had ketones in my urine constantly which my primary doctor said is fine because I’m not diabetic and another doctor said it’s still not normal. Which I tend to believe because I’ve never had it before.
Ok well keep me posted on the 6th. You can share the charts in a private messege here. 😉
I have a nodule in my spleen they are monitoring for size as well. Not rechecking it until June though.
I have to say Phoenixpalazzo is right. Please get an MRI and biopsy done.
Hi There
I too suffer the same pain and I was virtually ignored by the doctors I thought it would go when I stopped drinking but it didn't.
For the first time in a few years I have normal bloods but still have chirrosis of the liver.
Hope you get to the bottom of your symptoms.
Regards
Hayley x
How long have you been diagnosed? Were your enzymes always normal?
Hi
Diagnosed 16 months ago ...... My enzymes were sky high at first they gradually came down to the normal range doesn't change the fact that I've buggered my liver up. 😨😨
Oh no, I hope you’re doing the best you can. I know it has to be hard. ❤️
Thanks you too. ❤️
Do you smoke?
Not at all, never have. It’s all so confusing, I literally don’t even know what direction to go. I see a pulmonologist the first week of March. Basically for the last three years I’ve had pretty regular blood draws and my liver enzymes have never once been elevated. The doctor was saying that if it was cirrhosis then at some point the enzymes would have been elevated and if it was currently inflamed they would be elevated currently. Is all of tha correct?
Yes this is very correct.
As a side note, cirrhosis is very hard to catch. We are just the lucky ones who drew the short straw unfortunately.
Cheers,
Brett
It’s so terrifying. I feel like unless I get deathly ill they aren’t going to take it seriously. They want me to start getting some kind of injections so she said I won’t feel the pain there anymore. I was like so I need to get a weekly shot to make the pain stop instead of us just getting to the bottom of why it’s there. Doesn’t seem smart to me, lol.
Agreed!
that nodule in your lung doesnt sound good. and double the size is not good at all. Agreesive growing tumors are dangerous. Sorry I dont mean to scare you. Ask for an MRI and a biopsy!! Not a CT! And you should head to emergency probably, if u can. MRI with and without contrast.
One question, how did they get to the lung during an endoscopy? what made them go to the lung?
They didn’t find the lung nodule on endoscopy, I haven’t had that yet. It’s in March. They found the nodule on a CT angiogram because I was coughing up blood. The cancer board reviewed my charts and called and said they didn’t think I needed anything more than a six month follow up to see if it grows anymore. However, my primary care doctor said no she wanted me to see a pulmonologist now. So I go on March 6th.
so u had 2 ct's done? that how they tell it doubled in size? before it was small but it doubled that is very concerning. and becoming a size of 1 cm that fast is very concerning.
she is right, try to move up the appointment if you can. And also ask when it doubled in size what prevented them in doing biopsy?
Ajo13, if they knew u had a nodule in your lung did they order any tests to be done? or a biopsy? or mri or anything? When did u find out about the nodule? and are they to remove it soon?
Just so you are aware the liver does not feel any pain as it has no nerves. However the Glisson Capsule is full of them. The GC is wrapped all around your liver and even into it in some areas. If your liver is enlarged
at all or bumping into another organ this will cause pain .
That’s why I feel like my liver is inflamed, but my liver enzymes are normal and on my ultrasound no inflammation or enlargement was noted so the doctors say it isn’t NASH. The emergency room doctor that initially found my fatty liver told me about the capsule and how he thought that might be what was happening. He also followed that up with he doesn’t know much about fatty liver or steatohepatitis so I don’t know what to think. Right after the fatty liver diagnosis I was eating EXTREMELY healthy and walking two miles a day and after about a month, I got the pain the subside. I’d lost almost 30 pounds by November but over Thanksgiving and Christmas I started eating some junk again and now I’m back where I began. 😩
Hi Ajo, I am in the same boat as you, I have stage 4 Cirrhosis. After suffering R & LUQ pain under my ribs since before Xmas, I spoke to my Hepatologist who told me it was not liver related and might be my heart (angina). I told him I have a heart monitor fitted 3 years ago, so I know it was not that. I mentioned to him about the Glissons capsule which can cause pain when the liver & spleen are enlarged as in my case. He totally dismissed what I said, and sent me for a US and chest X-ray. The results of the US were enlarged liver and 19cm spleen. My pain is worse after eating, and it feels as though there is not enough room in my ribcage for all the organs there. I will be raising it with him at my appt in March, and I suggest you do the same. Do not have a Hepatologist as they specialise in Livers? I have 6 monthly gastroscopy's to check for varices and ulcers. I hope you get this resolved soon.
David
Not yet, I’ve been trying to find a Hepatologist but I’m starting to think they don’t exist in Portland. The only thing I can find is gastroenterologists that specialize in liver disease. I’m also worried that even if I find one, my primary doctor might not give me the referral I’ll need for insurance to cover it. They legitimately all think I’m crazy and that the pain is just anxiety. On my Ultrasound it didn’t show an enlarged liver nor spleen and then a month later I had a CT scan that showed them both normal as well so the doctors are over talking liver with me. When I bring it up, they dismiss it so fast like I’m an idiot. How are your blood results? Raised liver enzymes?
Hi Ajo13,
Our experience is very different from yours and others have addressed those so I won't.
What Portland do you live in? Can you find a different doctor?
There would be nothing wrong to take a list of all your symptoms to your visit with the pulmonologist and try talking to them about things. The pulmonologist might be able to refer you to a hepatologist.
Wishing you the very best,
Mary
Portland, Oregon. That’s a good idea! I’ve been trying to document every appointment and everything that I’ve asked for that they’ve said no to. They won’t even order a GGT blood test, which is simple. It’s all so frustrating.
Hi Ajo13,
I do know how frustrating it can be when you feel doctors are ignoring what you are saying. I saw it sometimes with my father and see it sometimes with my husband - at least my hubby's doctor will tell him that he has to treat what he feels is the most important issue first.
The others who have suggested reasons for pain have more experience than we do with that, so that seems good information and you could take their explanations also. The difficulty can be separating, for ourselves, symptoms that may be caused by our own anxiety, and that takes a doctor that listens, cares, and is willing to explain why they think as they do.
As my OB told me once [although not quite so true these days] - I pay him and if I'm not satisfied with his treatment I should just take my money and time elsewhere.
Best wishes,
Mary
Hi Ajo, since I stopped drinking alcohol, two and a half years ago, my bloods have more or less returned to normal, except mchc ( mean corpuscular hemoglobin concentration) which is higher than normal and platelet count which is very low (less than a 1/4 of what it should be) So you can have good blood results and still have liver issues. My cirrhosis, although stage 4, is at the moment compensated, so it's still able to perform most of it's functions. Doctors have a duty of care to their patients, and should listen to their concerns and not be so dismissive. Our NHS is very good, and I have received excellent treatment up 'till now. You should demand that they treat you with respect and take your concerns seriously. Let me know how you get on.
Take Care,
David
I hope you don't mind me replying. I have been fighting for a diognosis for literally over 2 years. Take a minute and check out Fibromuscular Dysplasia (FMD) and FMDSA.org
I was just diagnosed with FMD in both carotid arteries, and traveled to Cleveland for further testing. More sights were found. Both main arteries to my legs and the artery to my right kidney.
Long story short, my blood is not running freely, and more testing is in order. I'm SO happy I found Dr. Gornik in Cleveland.
Advice:
Get in front of a doctor who sees and treats FATTY LIVER all the time. Sign up for a study if you have too!
Open yourself up to any specialist who will listen & evaluate. If, I have to go the vascular route, so be it...I truly didn't see this coming! So all these arteries will be tested next month. Who knew?!
If I were a gambling gal, my money would be on scarring of the liver is causing my upper right rib pain. My gall bladder was removed years ago because it was diseased and not functioning (never stones). But I never thought the blood vessels to the heart and liver would be the cause!
Stay strong!
Of course not, you’re always welcome to comment. Have you been diagnosed with a fatty liver as well?
I'm still fighting to be heard. My 2nd and 3rd opinion GI docs downplayed everything to irritable bowel...
I love the support from Fatty Liver Foundation & follow the diet for some relief. Some of my weight came back with the holidays, but I'm trying to refocus & omit sugar. I'll speak with my liver specialist's "fill in" in a few weeks. I'll share the new diagnosis and establish communication between the two.
My one and only advocate is on medical leave with a brain tumor...My liver specialist is the best, but stopped short, as you say, because test results appear normal.
I related to your post, and commented.
HANG IN THERE & KEEP AN OPEN MIND. Allow the doctor to investigate. I do believe they get frustrated too!
PS ask for a liver function test. It took 3 years for my gall bladder to be discovered because there was no stones. The gall bladder was only functioning at 8%, and when it was removed I was told it was "diseased." It must have been ugly, I guess...
Losing weight can trigger stones or the gall bladder function. Something like that. Both my mother-in- law and I had problems after losing weight. We both had our gall bladders removed. She had A LOT of stones, I had none. It took many years and many doctors to finally get a good diognosis. It all came down to this liver function test & a doctor willing to listen. "There's one more test," she said.
Best of luck to you. Hugs!
Hmm, do you know what test it is? I’ve had the normal liver function tests that people mention. Alkaline phosphate, AST, and ALT. All normal. Alkaline phosphate sits at the high end of normal. AST and ALT sit at the low end of normal. I asked for the GGT test people mention on here frequently and they said “You don’t need it.” I had a HIDA scan after the weight loss to check my gallbladder function and it was functioning fine they said. I’ve really been through the ringer with everything, it’s honestly exhausting.
That's it. Gallbladder function test. Sorry for the confusion.
Not what you're looking for?
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