Hi all, I have been reading many of the responses to posts and it’s evident that you are all well informed, rational people. I am hoping that you could please give me some advice and answer the many concerns and worries that I am currently enduring pertaining to my liver health. I have tried to keep this to the point as so to avoid a “Ronnie Corbett” type story!
Current Time
I participate in a drug trial and was asked to increase the dose. When starting the trial, I suffered many GI issues which are a well known side effects. As a result, I have never been able to progress from the minimum dose. In Jan, I was asked to increase the dose slightly and had to keep stopping as experienced some issues. Loads of bloods were taken and I was cleared to re-start. Feb, I contracted a UTi, passing microscopic blood - which I still am, and the many symptoms I was getting, extreme fatigue, bloating, horrendous smelling gas, stools, stomach pains, was attributed to the antibiotics. I paid for an US which was clear but told my pancreas looked shiny! This drug is a diabetic drug and can cause pancreatic issues - must add I’m not diabetic. I’ve had a cardiac event in the past and this drug has shown to vastly improve cardiac risks in diabetic patients.
To keep this brief, I had two or three lots of antibiotics for the UTi, stopped the trial drug injections in March and had two lots of further antibiotics for sinus issues. GP said assume I had Covid, as had many of the symptoms. I am still not right and my main focus and concerns are based on the following symptoms.
Swollen abdomen - look pregnant Noises after eating or drinking. Loss of appetite and nausea, which has improved. Feeling full after eating or drinking Right upper quadrant looks more puffy Stools have started to float and mark the pan - sorry if too much info Diarrhoea which is sudden. This again has subsided. Constant belching Taste of and spitting blood most mornings. Not sure if this could be gum related? Back pain Face & neck swelling. Literally look like super Mario. This has not happened for a week now. Puffiness feeling in my arms, wrists, ankles and legs. This is improving and becoming less
2 x chest x rays, 2 x US, camera in bladder. Booked for endoscope.
Note: my bilirubin tends to fluctuate which the dr is not concerned about and thinks it’s probably Gilberts. He said this is quite common. My last reading was 22, but it has been 49. The Dr said I would expect it to be double that before I become concern.
Past
In 2010 I became rough, similar thing with back pain, keep wanting to pass urine but never feeling to be able to empty my bladder, microscopic blood in urine, bloating and GI issues. Had many tests again, all clear but my US showed liver - very coarse and echogenic, which would be consistent with fatty infiltration. When I showed the radiographer images of my previous US, taken 3 years earlier she didn’t believe it was the same liver! I asked the radiographer whether or not this showed I had cirrhosis and she replied no. This lady has conducted all my US so I have continuity. In Feb and also in Jun, when I had scans, she commented again that she could not believe the change in my liver and how good it looked. She said it’s normal and I can see your diaphragm which I’ve not been able to before. I very rarely drink these days. My last drop was first week of Jan. I really calmed it down from 2012 I would say. Prior to that I was what you would call a binge drinker. Every weekend, Fri & Sat, and well hung over the following day. I don’t miss these days!
I noticed back then that I lost an awful lot of muscle from my legs, thighs, backside, arms and chest. Obviously I’ve aged - now 49, and become less active. Was always in gym and playing squash.
Could any of my symptoms be an indication of liver disease or cirrhosis?
Sorry, forgot to add; if bloating is caused by acities, would this show on an US? Would a GP be able to identify by feeling the stomach? And would I be able to hold in my stomach or would it just be large at all times?
On these last two points, yes ascites would show on ultrasound - it's one of the main reasons that cirrhotic patients have a regular ultrasound scan and if your GP is a good one then yes doing the percussion test and palpating the tummy he/she should be able to establish whether you had fluid on your tummy.
Hi John, it sounds like you've got a lot going on there and a lot that followed your participation in this drug trial. You seem to have something gastric which is flaring if you had this sort of similar bother in 2010 and again now. You don't say whether or not you've been seeing a specialist following your earlier indication of fatty liver. If not I think you need to be being seen by a gastroenterologist as a lot of your symptoms seem to be more gastro related than liver and even if liver a gastro should be able to start looking after that side of things. I wouldn't be trusting all these symptoms to purely a GP nor paying for tests privately.
Get a specialist referral, you are booked for an endoscopy and I would be wondering whether a colonoscopy might look at things more in the bowel region.
Tests seem to have ruled out anything liver related but I would want a full work up from a specialist rather than a GP.
I had a colonoscopy 10 years ago which was clear apart from a few small diverticulae and considerable spasm in my transverse colon. Nothing was done after the fatty liver diagnosis neither with having high cholesterol and triglycerides which led to a heart attack. The latter are well under control now and the US radiographer said that along with the me hardly drinking now is probably the reason why my liver has returned to looking normal. My GP now, keeps saying nothing serious is going on. The trial team, who are fantastic and are both senior consultants in their fields, have only just returned as they were redeployed to the Covid response. My local hospital is one of the big London ones. I saw them last week and they suggested the. Endoscope. They took a lot of bloods too, which they are oblige to whilst I’m on the trial. I never google usually and boy this drug has some bad side effects but also rave reviews from many. Like everything, we are all individual and some things cause issues to some and not to others.
I think my past drinking history, though not as bad as many I know who still do it most days, and the radiographer diagnosing very coarse liver, along with the bilirubin keep fluctuating, I’ve always had this nagging doubt about whether I had cirrhosis or liver disease. This effecting my stomach and the visible bloating, despite some weight loss, has heighten these fears.
Thank you again Katie for taking the time to reply. I really appreciate it.
Hi Katie, just a quick update if I may. I took your sound advice and saw a fantastic GI. He diagnosed gut dysbiosis and done two stool samples, for blood and inflammation. The latter came back raised, to his surprise, so I had to have a colonoscopy.
He recommended a pro / prebiotic for the recommended 3 month course and said I should note vast improvement after two weeks. This never happened. I was prescribed an antibiotic which the NHS would not dispense due to cost. I paid privately, finished them today and note no difference. He said that I would need an abdominal CT scan and endoscopy. I managed to get the CT done on Thursday and due to have the scope on Tuesday.
Now to the point! I received the report today which I have been absolutely dreading as convinced fibrosis or cirrhosis would be mentioned after the US I had back in 2003 mentioned “very coarse”. despite a normal US recently. I also look 6 months pregnant that just appeared over the course of a few days in Feb. I was convinced I had ascites and oedema as the tops of my thighs and arms have got big - they were skinny. It’s very strange, I have gone back to my shape 10 years ago prior to losing a lot of muscle. Maybe something to do with probiotic gut flora?
I noted from recent tests that my platelets had dropped to 295 were in the upper 300s and my albumin had dropped to 37 a year or two ago but has risen back to high 40s. My bilirubin keeps jumping too to high 40s then dropping to marginally over the upper limit. I think this maybe more relevant to statin use then Gilbert’s which the GP thinks.
The report mentions the liver has a smooth contour and is of normal size. Can I interpret this as no fibrosis, cirrhosis or damage whatsoever, or would only a Fibroscan confirm this. The bile ducts were normal too.
I apologise for the ramble and if this post seems rather stupid compared to others on here that are unfortunately living with a confirmed condition. I have been really concerned about my liver for 7 years and have been in a state of panic for the last 9 months however I did get reassurance from your last reply.
Thanks again
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Just seen that results should not be posted. Sorry for that.
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