Hi friends! Liver/Spleen Dilemma

[Ajo13]

It’s been a long time since I’ve been on here. Admittedly, I tried to stay off because I was giving myself immense anxiety regarding my health. I first joined back in 2018 because I was in quite the conundrum with my doctors. An ER doctors said I had NASH, GI said I didn’t, and so on and so forth. I have seen tons of doctors since then and have continued to have strange symptoms every now and then that point to liver issues. I’ve still never had a single elevated liver enzyme in the last three years. Despite my primary doctors telling me all my issues were my anxiety, I managed to find a different doctor that referred me to a Hepatologist. He too kind of downplayed my issues. He ordered a Fibroscan and unfortunately it couldn’t be considered a valid scan. They only got three good reading. I have had many other imaging scans since then which have never had any mention of the liver, minus simple steatosis. Now, here we are in 2021, and I have an enlarged spleen. The CT scan with contrast from last week said it’s mild. Zero mention of the liver. Just says no focal lesions. Now I can’t seem to find anything that says only fatty liver causes an enlarged spleen. I’m seeing that correlates with severe liver damage/cirrhosis. I made notes of all the scans I’ve had and what the interpretation was. I guess I’m just curious if anyone else has had an enlarged spleen with just fatty liver, no cirrhosis? Also, does anyone have any insight on if it’s possible that I’ve had ALL these scans and not a single one picked up a single sign of a cirrhotic liver? I am so worried and feeling very defeated because I fought doctors for two years and tried to tell them something wasn’t right and they all wrote me off and said I just had anxiety. My heart hurts. Thanks in advance for reading this novel! I hope you all are doing well. ❤️

Abbeye

[Worrysome1]

Talking to a lady the other day, she has low platelets and enlarged spleen, healthy and no cirrhosis.

[Ajo13 in reply to Worrysome1]

I am so confused what the heck is going on. All the labs they’ve done, my platelets haven’t been low, but I think they may fall occasionally because I get those red dots. Then, they fade. It’s all just so overwhelming. Thanks for letting me know, I haven’t been able to find anyone with the same situation.

[Worrysome1 in reply to Ajo13]

She isn’t concerned at all and is a nurse. Yes, it’s frightening this liver business.

[Ajo13 in reply to Worrysome1]

Did she say if she had been diagnosed with a fatty liver or any fibrosis?

[Worrysome1 in reply to Ajo13]

No, no fatty liver or fibrosis.

[mantana]

I have chronic hepatitis B for... nobody knows how long. Treated with Vemlidy (TAF) for almost a year now.

I have enlarged spleen, low platelets, and, from time to time, more often than not - increased WBC.

These conditions remind leukemia (CLL) so much, that this was my first diagnosis (before I was diagnosed with hepatitis B); now my CLL status is "it's not compatible with CLL and let's see what results in 6 months show".

I also have mild fatty liver - though I'm not and never was obese, am vegetarian, don't drink alcohol (when I was younger, I used to drink a few beers - per year).

Fibroscan was normal; liver enzymes (ALT, AST) normal after I've started Vemlidy treatment.

[VeeWat in reply to mantana]

Did you start CLL treatment?

[mantana in reply to VeeWat]

No, I did not. According to the last few blood tests, the results are not compatible with CLL nor any hematological disease.

On the other hand, my hematologist sees that something is definitely not right with my blood results.

[Ajo13 in reply to mantana]

I think there is something else going on with my besides Non Alcoholic Fatty Liver causing these issues. Before I was even diagnosed with a fatty liver, back in 2018, I was getting red rashes down my face that looked like the kind of rash you get from low platelets. I’ve been diagnosed with a venous malformation in my right lung and had all my autoimmune markers that were tested be high. They checked them again and they were low so they said I was fine. I’m not so sure.

[Worrysome1]

It’s horrible being worried, I hope you’ve found some comfort. I’m sure if they were worried about your spleen, they would have referred you on. My friend has low platelets as well as the enlarged spleen but doctor not concerned because it doesn’t affect her. I’m depressed and worried myself, I’m interested why the Fibroscan didn’t work out. I had one the other week and it says 10 valid readings but still not sure of its accuracy. Does the machine tell the operator if it hasn’t been successful?

[Ajo13 in reply to Worrysome1]

They couldn’t get ten valid readings for me. They only got I believe three valid reading so not enough for the test to be conclusive. He said my ribs were really close together, I didn’t really understand what that had to do with it, but he tried a few different probes. I am scheduled for a endoscopic ultrasound with biopsy and upper endoscopy as well now so hopefully that will get me the information I need on my current status. It’s not until October 8th.

[Worrysome1 in reply to Ajo13]

Do you feel well? Think symptoms more important than anything else but you’re doing the right thing having investigations to find out exactly what’s happening. It’s being kept on top of and will stop anything developing in the future. Keep ringing for cancellations then you can have mind at rest sooner. Good luck. Xxxxx

[Hidden]

Your scan cycle is very similar to mine. I started with 15cm and now it’s 17 cm, also smooth both times. My spleen is also enlarged( according to my team, this is common in Nafld since both are connected). Last fibroscan showed very minor scarring( 7KPa). Have since lost 110 pounds in 7 months and am going in for my first fibroscan today in over 2 years! So to answer your question and finally put your mind at ease, my spleen is mildly enlarged and absolutely no cirrhosis

[VeeWat]

Let us know what they found, if anything.