Liver Troubles - Looking for some extra eyes on this winding road

[Jay757]

UPDATE: 4 months later- included as reply!

Hey all! Bit of a story here- hope you give it a read.

I am a 38 year old male, slightly above average height and weight, who at the age of 22 got sick while travelling and never got back to 100%. Had to deal with bouts of fatigue, digestive issues, erectile dysfunction, and such since. At one point- maybe 6 years ago- doctor told me I had high cholesterol and "a little bit of fatty liver" after blood tests and an ultrasound. I cut back on drinking and ate healthier and focused on doing a bit more exercise in response. They tested my cholesterol a year later and it had gone down a decent bit.

Eventually - a couple years ago I had a scary episode while on a work trip. That trip I had been drinking one beer an evening which was more than normal for me and taking some advil in the days which I sometimes did if I was feeling lousy. Well there I was driving along a bumpy road and I became very dizzy and very nauseous and I told my workmate he needed to take the wheel. I got out of the car to walk round to the passengers side and I found I couldn't walk easily at all. It felt like my right leg wasn't working properly on top of the dizziness and nausea. At this point I told my workmate what was happening and realized I was slurring my speech. Now I was fully alarmed. Was I having a stroke? What was going on? I immediately tried to smile and raise my arms, things I had remembered to do to see if a stroke was happening, and I was completely able to do both. Then I vomited twice, then 10 minutes later a third time (I think the third time it may have been pink in colour but can't say for sure). Got back to the hotel and relieved my bowels, took a gravol and got some rest. Woke up the next day feeling mostly better and sort of limped through the rest of the work trip. Did see the nurse there (it was a small town in the middle of nowhere) and she thought maybe food poisoning but I wasn't so sure.

When I returned to my city I mentioned it to my doctor who suggested an ultrasound and some blood tests to see what was going on. Blood tests were all normal and after waiting like almost half a year I finally had my ultrasound in early 2020 (before the pandemic). Now, something completely daft of me, I until very recently never knew that you had to fast from drinking water for ultrasounds- I just fasted from everything else. So the techician always mentions I am gassy and it's difficult to see things. However they did spot a small "probable hemangioma" of 3mm on my liver. Only weird thing was that typically a hemangioma is there from birth and my previous ultrasound from a few years back hadn't shown anything on my liver. My doctor said come back and get another scan in 6 months and we will get more info on this little guy.

So the pandemic began and those 6 months were insane but sure enough back I came for my followup (again drinking water right before the ultrasound like a fool) and this time the technician seemed alarmed- she got me to pee and do other things. The next morning I got a call and they were worried about something they had found on my kidney. Thought it may be cancerous. Meanwhile the hemangioma on my liver had apparently "vanished".

So I am rushed in one week later to get a CT scan of my kidney, I asked them to be sure to dt my liver in the scan too because that seemed more likely to be an issue for me with my history. Si they did. Well it turned out the kidney lesion wasn't there- it was a "shadow on the ultrasound"- but sure enough there were two small lesions next to each other on my liver. About 3 and 5mm. Cause for celebration they said. No kidney lesion and liver lesions were almost certainly benign as I am a healthy guy. My doctor said we are all good here. She said "we can do one more followup in a year if you'd like" and I agreed.

Some time later. After taking about a year off drinking (and painkillers) since the weird episode on the work trip, I decided to experiment with one drink out with my girlfriend. It definitely hit me harder, and I had a weird hangover like feeling the next day (and the day atter that). But my reduced tolerance to alcohol had been something I had mentioned to my doctor and she said as long as I was limiting my drinking it was okay. So a month later I had a celebratory drink with friends. Then a month after that, a week agter my second covid vaccine shot, I had a full pint with some old friends.

Well damn that hit me hard. I def felt on the night as if I had drunk three or four drinks. And I just felt bad. Then the next three days were miserable. I was alarmed. Swore off drinking for good, phoned my doc and demanded an ultrasound ASAP. Could this be liver cancer? I was getting worried again.

A month ago I got in for that ultrasound (again- still drinking water before like a fool lol) and the result was that the "probable hemangioma" (the ultrasound had always just seen 1 but ct scan showed 2) had grown to 7mm.

On the result they noted that if there were clinical symptoms that perhaps a followup CT scan was a good idea. My doc said no- she believes that we don't need to risk a CT scan. I asked for some blood tests and she agreed. Blood tests were normal.

Okay. I went back to my life. But this time I couldn't stay settled. I feel like this could be something worse. So a week ago I asked her to refer me for an elastography or a Fibroscan to see if in fact my liver is in worse shape than assumed. She said she needed a day to consult an expert and she told me the next day that she was rejecting the referral request but would refer me to a liver specialist. That was good, but I politely asked her if we could do one thay won't take 3-6 months to see and ahe said that she would try.

In the meantime I have been focusing in on liver health. I spent days going over possible signs of severe liver disease and even did a tapping test in myself for ascites haha (doesn't appear that I have it). Only thing that rang true for me is I do have some faintish telegiecnasias on the bridge of my nose and my cheek. Also maaaaybe some palmar erythma. However I should note that I am pale with a reddish complexion so that means I am more likely for such things anyway.

Alright. Wow. You still with me? If so thank you! I would love some opinions on all this. Cheers!

-Jay

[Alterity]

Get a specialist, and MR I and a fiberscan. Blood work and ultra sounds are not consistent. Flu like symptoms are one of the things that happen especially when the liver rebel. I have 6 nodules on my liver and checked every 6 months. Stop all red meat. That can tear you up. Good Luck. I've had a specialist for 20 years, gave me 6 years to live. I'm still here!

[Hidden in reply to Alterity]

I would suggest either an MRI - possibly with contrast - or a guided liver biopsy.

[Hidden]

Just out of interest, how did you percuss your own abdomen to check for ascites?

[Jay757 in reply to Hidden]

I watched a YouTube video of a doctor doing it on herself and followed her actions (after learning about the differences in sounds between tympanic and dull).

I lay flat on my back in the supine position and placed a finger from my left hand on different parts of my belly. I used by other hand to tap that finger and create percussion. I searched for a dull sounding area (corresponding to the sound over the bladder for reference). Then I tilted sideways each way checking for shifting dullness.

Worth mentioning- I am not a doctor, I just played one on TV.

[Hidden in reply to Jay757]

Great! A bit surprised a doctor would get away with recommending doing it on yourself and then document that via YouTube. I would have thought that would invalidate the test and there would be repercussions for them in doing this, but stranger things have happened! Thanks for explaining

[Jay757 in reply to Hidden]

No problem!

The doctor was doing it on herself because she wanted to demonstrate how to do it to her class but was stuck alone in covid lockdown at the time.

[LeiL]

Stop diagnosing yourself. Just results in anxiety.

[Jay757 in reply to LeiL]

That is definitely true. Thanks for reading and offering your thoughts.

[Unclemud]

Hey Jay, I've been there. I've been an alcoholic since I was 13. I'm 51. About 8 years ago I was loving my life , had a keg fridge ,drank one every month, bought my wine by the pail, was enjoying all the new beers coming out from micro breweries and I used to enjoy hard liquor straight up with frozen berries. So I was white kayaking and my buddy went for a swim, as I was rescuing him I felt a scratch on my leg. It was giant hog weed. About ten days later I was prescribed steroids. Everything went down hill from there I think. I was also put on antibiotics as it looked like I had a tick bite. This is where my story starts to sound like yours. My liver started to hurt, my gout got much worse, my eyesight was horrible in the dark and my tolerance to alcohol diminished. I started getting sharp burning pain in my liver, it would wake my up at night. This is when I quit drinking and went to the doctor. He did an altrasound looking for gallstones and didn't think it was my liver because my blood work was ok but not normal. AST and ALT were good but I have below normal GGT. I forgot to mention I lost 50 lbs before I quit drinking. I had been having dizzy spells, I was fatigued all the time . So my first ultrasound showed nothing, a year later 3 cysts, l had completely quit drinking already for a year as 1 or 2 drinks and I would be sick for 3 days to a week. Soo my doctor retired and every time I go back a year later, I have a new doctor and they keep telling me it's not my liver. It wasn't just alcohol, I was unable to tolerate dairy, meat, fats and fruit. I had tubes shoved up my ass and down my throat. I think every doctor tested me for celiac and H-pylori. Neg, three years in a row. After another ultrasound the nurse said do you know you have cysts in your liver and I said yes, but every other doctor said they won't affect you. She sent me for a CT scan and it showed my liver was full of micro cysts. So I finally get sent to a liver specialist and the fibroscan said my liver was perfect besides the cysts. And I should mention it was torture, literally the fibroscan lit up my liver. It was like being burnt and electrocuted at the same time. The nurse that was doing the scan asked if it was cold and I said it hurt, she said it doesn't hurt. She klicked it again and I was like a frog on a science table, she klicked it like 3 more times and I said stop. She said I had to stay still to get a good pic. TORTURE. Anyway the doc said cysts don't cause any issues and my liver is fine," BULLSHIT ". Here's what I know, ethanol, fructose, fats(hydrogenated) and corn are very hard on the liver and would make my liver hurt. With the fructose I found that I can eat small amounts of organic fruit without issues. Almost no fats, coconut oil or fat doesn't seem to have any issues and almost makes me feel better. I started taking ox bile when I had fat. I should mention my fats are all plant based now. I'm on a whole food organic diet and I feel great. I even started drinking again, I should mention only organic beer. It's out there. I have no issues with it. I hope this helps you on your path to better health and on another note, I have wondered if there is a heavy metal build up in my liver from work, and I heard you mention work .

[Jay757 in reply to Unclemud]

Thank you for sharing this. Definitely some similarities. I had a tick on me for a few days like 15 years ago. Tested negative for lyme disease (a few times) but always wondered.

[Jay757 in reply to Unclemud]

Just read this all again. It really is quite similar. I may have to do this plant based diet! Unclemud thanks man.

[MW923]

Ho Kay. Thanks for sharing your story. I had lots that have mild Nash I have not had my fibro scan yetanf I'm terrified. My liver enzymes are elevated but nit bad much better being I lost 40 lbs. I eat healthy. I pray your test are going to be good. Have you had a test for NASH?

[Jay757 in reply to MW923]

I have some anxiety too (as another user intimated) but we need to do our best to keep our wits about us- the worries job is to give us a chance to survive- once that is in motion it has served it's purpose. I havent had a test for NASH. My tests are weeks to months away as I am still waiting on seeing the hematologist until then I can't even get a fibro scan or US elastography. However wheels are in motion for a potential follow up CT.

[Jay757]

UPDATE

It's around 4 months later.

My doc didn't end up getting me a liver specialist but got me someone I could see quickly who specializes in virology- specifically hepatitis. Who happily gave me a bunch of blood tests such as AFP and others for my liver. Tests came back great. Meanwhile my GP is setting me up with a dermatologist for some suspected rosacea.

I have also been conferring with a highly respected doctor on the phone who is a family friend. I have been trying my best to trust the doctors, but now I have a scare...

I have mid-back pain that has been getting more noticeable. Never had that before (some lower back and neck pain, sure). The pain feels like it's in my spine. It started out barely noticeable in mid December- started being an issue in mid January- I took steps to deal with it then- tried changing shoes which had helped with previous back pain and other steps. Also stopped carrying items etc.

Things definitely improved and I pushed scary thoughts out of my head. However not its a month later and all the pain is back plus more. What's new, as well, is the pain persists when I am laying on my back.

So my fear now is the doctors were wrong, the ultrasounds were poor, the one CT scan didn't give enough info, blood tests didn't show anything- but my fear is that I do have liver cancer and now it has spread to my thoracic spine.

Not fun.

Anyway- so I got the virologist to do another battery of liver bloods which I did on Friday and am planning in doing a full week of trying to sort his out. My thinking is that if I in fact have liver cancer that is now spreading to my spine it should finally be picked up on bloods. If bloods say nothing I can be a little relieved but still put a bunch of effort into determining whatis going on with my back.

And push hard for another CT scan perhaps (or maybe finally that fibroscan.... or both).

Me being me and having some anxiety I am atrempting to prepare for the worst which is a very daunting cancer treatment where I would have low odds of survival. We will see...

Thanks again for reading!