Appointment questions

[ktan49]

Afternoon all. I'm gonna write my symptoms Down before I go to my consultant next week, but is there anything I can say to him to try and take me seriously? Obviously he is going to arrange my ammonia levels.. but at what point will he refer me to hepatolgist? I don't want to get too poorly and can he do faster referrals than what my gp can do (asked gp to refer me but god knows how long that will take) does anyone find that lactulose doesnt work on it's own? Many thanks

[Hidden]

Do you have an actual diagnosis yet and is your consultant a gastroenterologist? GP’s are just that, General, hopefully they did your bloods, mine didn’t. Gastro’s are well up on things Liver, they will ask the relevant questions, your notes on symptoms will assist with the answers. I ditched the lactulose and ate piles of fresh fruit, lived off the stuff practically. I think for me personally it was beneficial, has HE been diagnosed? If so inquire about Refaxamine, it should arrest further deterioration. Feel free to ask any thing further on the forum, I have been transplanted and you’ll find lots of useful advice and support here.

[ktan49 in reply to Hidden]

Thanks for your reply snoutie. No official diagnosis although my consultant (gastrontologist) arranged Fibroscan which came back at like 3.5 or something. Lots of faty Liver, endoscopy showing 3 grade 1 varices. Feel like I'm going down hill fast. Shortly term memory has gone, can't even think.. blank slate. Can't get right words out, stuttering, partner says it's like I'm *drunk* at times. Extremely tired all the time can hardly function. I feel like I'm doing everything so slowly even if I try to do stuff fast... dizziness all the time i feel light headed and as if I'm drunk.. not a pleasant feeling and disoreinatation. My bloods are high.. last time I had bloods was like 5 - 6 weeks ago ALT 179 . GGT 149. all my joints hurt especially knees and wrists. Bone pain. I was fit with no issues (apart from dullache I had for years right side) all of a sudden 4 months ago I feel like I hit a brick wall.. I can't even read properly now I can't process the word s fast enough. Yellow /pale stools all the time sometimes with bright red blood. Orange urine. Occasional kidney pain also. Feel absolutely rotten and feel as if I'm not actually here ... personality changed ALOT. Nausea has got worse. Itchy arms. Oh and a horrible tremor.. worse in hands but can feel it through whole body.Sorry for long reply.

[Hidden in reply to ktan49]

ktan,

Sorry to hear all of that and it does not sound great. I am not medically trained but it reads like you have liver issues and it’s good that your consultant is looking at the right things, just tell them what you have just written and if possible please take your partner with. Do not fret over the Hepatology thing, that will just add to your stress. Look after yourself, avoid alcohol, try and eat healthy food. Your GP can help with the itching, fenafaxadine, Dermol and Zerobase worked for me. Any bleeding, call an ambulance immediately. Good luck and your consultant is looking in all the right areas.

Mark.

[Rhubarb17 in reply to Hidden]

I agree with Edward1952. I was having all sorts of problems and a more in depth blood analyses was done. My ALT was 220 and ALS was 150. I was diagnosed with Hep C. Fibroscan score was 17.3. The Hep was treated and is now undetectable but the final Fibroscan was 21.6. I have cirrhosis but compensated so no alcohol, no smoking, balanced diet and exercise. I also have HCC scans and full blood work out every 6 months. Get a check for Hepatitis.

[Hidden in reply to ktan49]

If your FibroScan score was 3.5 kPa and the score was accurate then you couldn't have fibrosis or cirrhosis. A score of 3.5 kPa is what you'd expect to see in a young person with no damage at all to their liver.

Something doesn't add up because if your liver was inflamed to the point of ALT being 179 and GGT 149 at the time the FibroScan was done your liver should have been stiff from the inflammation with the FibroScan score reflecting this. Another FibroScan to verify the accuracy of the first result would be worth doing.

The grade 3 varices also don’t make sense unless maybe you have haemorrhoids. With ALT being 179 and GGT 149 you most likely have acute hepatitis & should be checked for all of the different forms of hepatitis. The good news is that if you have acute hepatitis and it can be successfully treated then you can fully recover.

[Hidden in reply to Hidden]

Edward,

Accept my apologies if you feel I am being pedantic, but it reads 3 grade 1 variaces, hence call an ambulance if there is any bleeding. Agree the fibroscan reading doesn’t add up, sounds like a CT contrast scan is required.

Mark

[ktan49 in reply to Hidden]

I forgot to mention i had a CT of abdomin and pelvis with contrast which came back clear apparently.

[Hidden]

I developed a big fatty liver from drinking, and actually experienced a lot of advanced liver symptoms much like you. Liver pain, brain fog, strange body odor (ammonia like), anorexia/nausea, etc. Fibroscan wasn't available in the states back then, but ASH Fibrosure done 7 years into recovery showed fibrosis at F-0, so apparently you can have symptoms associated with advance disease without advanced fibrosis.

If your fibroscan indicated fatty liver, it shouldn't hurt to adopt a fatty liver diet while you wait to be seen by hepatologist. I did a lot of research on fatty liver during my recovery, and found some interesting associations between FL & vegetable oils. Three in particular, corn oil, canola, and safflower were strongly associated with fatty liver.

I had been eating a lot of fish & chips down at the pub, & when I looked at the oil they used it was canola. Quitting alcohol and avoiding vegetable oils with a high polyunsaturate fraction really helped with my recovery.

Vitamin-E and Lecithin have some promising research published you might want to look into, but you'd have to ask your doc about these before you buy or try them.

I've never had a sweet tooth, but High Fructose Corn Syrup (HFCS) also is strongly associated with fatty liver. Sodas are full of HFCS, but fruit juice also very high in fructose, & I had added orange juice to my morning routine several months before I got sick.

Fatty liver may turn out not be your primary problem, but it shouldn't hurt to modify your diet while you wait for a proper diagnostic.

[mncold]

Hi ktan49,

Sorry to hear you aren't doing well.

Can your partner go with you to your doctor visit? That can be a help, especially if your partner is comfortable with speaking up [even if you don't want them to]. And it helps to have someone write things in a notebook to remind what happened at each visit.

Best wishes,

Mary

[ktan49 in reply to mncold]

Hi Mary, my partner is working but I'm going to take my mum with me to the consultant. She won't leave until we get some answers.

[mncold in reply to ktan49]

Hi ktan49,

So good to hear that someone, especially your Mom [as a Mom], is able to go with you. I find a small notebook is helpful for later.

Best wishes,

Mary