Uncertain diagnosis from doctor

[newsy78]

Hoping to get some helpful advice here, as I've just stumbled across the website. I've had some discomfort in my upper right abdomen for years. It's steadily become more noticeable. I've suspected it's my liver but liver tests always come back clear. 2019 I was diagnosed with Fatty Liver disease, which, I'm told, was off the back of an ultrasound, and was told it was due to 'stiffening' of the liver. Confusing as the liver blood tests are still clear?! I have other symptoms which I'm concerned are related - smelly urine, and back pain. I never put on weight. After being told that some pain has no source by a GP (I haven't been back to see him) I have persevered and after an MRI to look at my spine and a more recent ultrasound where they observed that the liver is extending below the ribs, I have been referred to a gastroenterologist. It's a five month wait. Should I wait this long, or do I have other options? I guess I could afford a private diagnosis if time is of the essence. I've always been fond of a drink socially, and usually drank once or twice a week. but hangovers have been much worse over the last couple of years. I've drank very infrequently since last summer. I know it's time I went sober until I get some more defined answers. I'm 42 and new baby was born Boxing day, so I'm keen to be around for a while longer.

[LeiL]

First I want to say is that you need take action/steps to relieve your anxiety. I think that is the worst and severely impacts the quality of life. I’ve never been a drinker and my liver diagnosis was NASH. I had a total thyroidectomy that brought on metabolic problems. I reduced my weight to achieve a 20 BMI and increased exercise. After losing the weight and starting a more aggressive exercise program the right side liver pains began. I ‘m happily reporting that a MRE two days ago revealed no fibrosis and no fat. Yet, I still have right side liver pain. the only explanation that has been proposed is that it is the colon or possible repositioning of the liver after fat loss. I also developed severe GERD and gastritis for the first time in my entire life. Again, no clear explanation why.

I know I couldn’t wait 5 months for an appointment.

[Yarkis]

Liver function blood tests can be "normal" in someone with varying levels cirrhosis, it's not a perfect science. 5 months is a long ass time though. I'd look for another gastroenterologist with a little more free time. Possibly a hematologist. With RUQ pain for a few years, fatty liver, and an enlarged liver, I would suggest fast-tracking a diagnosis any way possible. Fatty liver left untreated can turn to cirrhosis without warning and if cirrhosis already exists, the sooner you know the better your chances are of living long normal life. Until you find out what's up, you might want to lay off the drink and try to get a healthy exorcise and diet plan going. As far as the smelly urine, and back pain are concerned, sounds like a UTI to me. Have your GP run a peepee test to rule it out. Best of luck Newsy

[newsy78 in reply to Yarkis]

I've had a few UTI tests which all come back negative. I'd also mention that I've always hovered around 10 stone, and want to put weight on, which is another mystery as it seems fatty liver usually affects those who are overweight. I do plan on not drinking and cutting out unhealthy fats, at least til the May appointment.

[Laura009]

I think you really need to look long and hard at your drinking habits ... indeed you do need to "go sober" and not just until you get difinitive answers but for good in order to give your liver chance to recover. By the time your appointment comes through, 5 months of sobriety is highly likely to have reduced your symptoms significantly. If your doc had considered your referral to be that urgent your appointment would have been alot sooner. Having said that, the covid situation may have some effect on the wait. You could try private but many private hospitals are helping out the NHS at the moment so you may not get seen much sooner. You owe it to yourself and your baby to take responsibility of your own health and lifestyle in these trying times. So give up the drink, eat healthily and get plenty of fresh air and exercise. Little changes can make a big difference to the health of your liver.Good luck to you.

Take care and stay safe !

Laura

[Kakey]

Hi newsy, welcome and congratulations.

5 months doesn't seem like a long wait, if you're in the U.K., but if you can go private and speed it up why not? I think the GI would give you additional tests to see what is going on, but your initial diagnosis may not be changed. Continuing to follow any advice you were given is obviously the best thing to do right now.

I think you urinary issue is probably separate from your liver, could be a chronic infection or similar. You definitely need to speak to your GP about that, especially as you have recently given birth.

Best wishes x

[newsy78 in reply to Kakey]

Thanks Kakey. I thought I had better clarify that I'm a recent Dad - rather than Mum. The Urologist said he could diagnose me with prostatitis, but didn't see the point. I'm always thirsty. Frequent smelly pee etc. I wanted to mention these symptoms to see if they correlated with anyone else's liver issues.

[Kakey in reply to newsy78]

Sorry for the assumption, silly me 🙄.

PBC, an autoimmune disease that affects the liver, has an association with UTIs. If you've seen an urologist I guess your kidneys have already been looked at?

[newsy78 in reply to Kakey]

Yes, been discharged from Urology. Living with the urinary problems. It's signifying something is wrong but don't know what. Hoping I will see some improvement cutting out alcohol & tea/coffee. Hoping PBC is something that will be checked when seeing the Gatro doctor then..