confused about what I have - is it my liver (or pancreas) or something else

[Shoe2]

I am just looking for some advice. I have had awful symptoms since end Jan this year of abdominal pain upper right, very pale fatty gassy stools, bloating, itchy skin on arms legs and stomach, initially insatiable thirst, shortness of breath, now little spidery veins appearing on side of ribs (not with a clear red centre), lower back ache and pain in my shoulders, fatigue and general malaise, and lots of small varicose veins appearing on ankles and legs. I feel like my circulation is poor, I had had tingling in thumbs, cold and numb fingers and feet when it is not that cold, bloodshot eyes.

I have had 2 lots of LFTs and a fair full range of bloods including for autoimmune, chest x-ray, ECG, EchoCardiogram and then abdominal CT scan and finally a gastroscopy

I had low B12 and now had loading dose which did make me feel a lot better but still have gassy GI the veins and itchy belly with slight rash and fatigue and shortness of breath.

I had been drinking heavily but stopped end Jan with 2 exceptions of binging weekends when I fell off the wagon.

Every time I look at sensible websites like NHS and various organisations like BLT the illness most fitting my symptoms is liver disease.

But GP and now Gastroenterologist saying liver and pancreas and bile ducts are fine and portal vein fine and no sign of varicise in oesophageal or stomach. And Gaston told me I am not yellow.

they though maybe gallstones or chronic pancreatitis but told not either of those.

Does anyone have experience of having liver disease without raised LFTs or anything showing on ultrasound, CT scan or upper endoscopy ? Can I be reassured by the medics?

Can I have had an initial flare or severe inflammation of liver or pancreas that calmed down by April when I got CT scan and actually the test missed a fatty liver stage or early cirrhosis.

I am just very confused. Many Thanks for anyone who has any advice on what next.

I know my body and am not well but finding it hard to take the medical advice that there is nothing wrong with me.

[wp69]

I can relate to most of them

[wp69]

I said most of them

[Shoe2]

Thanks for reply. Out of interest how was your fatty liver diagnosed? I had ultrasound saying normal before I had CT scan.

[Shoe2]

have had pains in hips lower back shoulder and achy joints.

[PipM82]

sounds like a lot of anxiety playing on your mind

[Steiff]

Have you been checked for gallstones?

[Shoe2 in reply to Steiff]

Yes. That is what second GP suspected and sent me for ultrasound. Not those. But thanks for flagging.

[Schnoodle2017]

hi, I’ve had some of the symptoms you had. Funnily enough it started after having had COVID last October. I had pain in upper right quadrant. I’d felt nausea after eating big meals, pain, like a knot in my back. Went to drs. Was given PPI meds which seemed to have done trick at first. Then, Christmas and the over indulgence. I had these problem come back. I waited a month to get back to normal diet. The pain wouldn’t go away. End of Jan went to drs. April had ultrasound. They found moderate fatty liver and fatty pancreas. Also a smell hemorrhagic cyst on right kidney. They are monitoring cyst and will have scan in the autumn. As for fatty liver and pancreas; I was told it’s very common, I need to lose weight. That’s what I’m trying to do. Stomach isn’t too bad lately. I get the odd episode where I feel pressure in my stomach, need to go to toilet a fair bit and feel drained during these episodes. Fortunately these episodes aren’t too often.

You’re doing the right thing getting tests done. If they can’t anything serious that’s very encouraging.

[Alibaba80]

I have some of these symptoms and many more. I have a liver issue called Nodular Regenerative Hyperplasia which no tests showed. It was only when I had a biopsy i was diagnosed

[Alibaba80]

Do you have any problems eating by the way or bowel issues? I notice you said you had breathing problems and I do aswell which is extremely uncomfortable

[Shoe2 in reply to Alibaba80]

I don’t have eating problems specifically. But do get very full of gas and sometime clearly not digesting my food fully. Howells been soft for ages with a short bout of constipation. Doc does think bloating predominant IBS. Which may be the case now. But does not explain the shallow breaths and what I felt for the first 3 months.

Thanks. I will look that one up also.

[Alibaba80 in reply to Shoe2]

Yes shallow breaths I get also, and also like a heaviness in my chest and throat. Do you get heart symptoms? Palpitations?

[Alibaba80 in reply to Shoe2]

You get pain in the right side also like me?

[Shoe2 in reply to Alibaba80]

Hi. Sorry late reply. I did have pain in right side but that has now gone. I recognise that heaviness feeling in chest. Wakes me sometimes in the night. Now I also have spidery veins on my ribs each side and a bulge above belly button that feels tingly going outward which I worry is formation of caput Medusa. !

[BritishLiverTrust8 Moderator British Liver Trust in reply to Shoe2]

Dear Shoe2

We would encourage you to speak with your own doctor or another health care professional about your new symptoms.

If you would also find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[RugbyMama]

Have you had your blood sugar checked?

Insatiable thirst can be a sign of diabetes

[Shoe2 in reply to RugbyMama]

Thanks for the message sorry late reply. I had the HBA1c level test which said normal. But the thirst was for the first 6 weeks of feeling very ill. Made me think pancreatitis as can develop type 3C with that. But I don’t show other diabetic symptoms and am verging on underweight and always have been. But lost 10% to f my body weight over a few months.

[Kimchi1]

hello Shoe2. I am new to the forum and found your post from a year ago as I have similar issues. Did you ever get to the bottom of what was going on with your symptoms ? I hope you are now much better. Thanks.

[Kimchi1]

hi shoe2 did you ever get to the bottom of your symptoms and get a diagnosis ? I have similar issues to yours and am feeling confused and worried. I hope you are much better now. Thanks