Worrying of the unknown

[Sheluska]

Hello. This is my first time posting, I am also a newbie. I had been seeing a hematologist for two years as my ferritin levels were very high, and my platelets were increasingly getting low. After two years, they decided it was not a blood issue an I was referred to a GI who specialized in hepatology. I have had an ultrasound on numerous occasions, blood work, and recently a fibro scan. I was originally told I had cirrhosis, and after my fibroscan the technician indicated that there was significant lesions consistent with NASH. I have an MRI next week and then they mentioned a biopsy.

They are not good at following up and my follow up appt is not until July. My platelets are at 68, and I do have some consistent ache in my side, I also have enlarged spleen. My fear is that my mom just passed away two weeks ago. A picture of health, walked 10 km a day, was involved in the community and in 12 days from finding out she had cancer of the liver, pancreas, stomach, she passed.

I am not sure how serious I am but can see how serious it can get without knowing. Has anyone experienced this unknowing worry?

Thanks for your response.

[nash2 Partner]

Do you happen to know what the numerical results of your FibroScan were? From your description, I think you need to be evaluated by a hepatologist, a liver specialist, but the MRI will answer your questions about possible cancer and you probably should opt for the biopsy as you will want to understand fully what your liver status is. Many of us have a history of waiting too long before we actually got a proper diagnosis and the worry is a real burden for many.

[Sheluska in reply to nash2]

Thank you for your reply. No I did not get a numerical result. I also had an ultrasound and CT scan prior at which time I was told that there was no cancer but that they would keep evaluating every 6 months.

I guess patience is a virtue !

[nash2 Partner in reply to Sheluska]

Well, patience with advancing liver disease is not a useful virtue. We certainly can't diagnose anything, but with their testing and your blood work they are managing you as a cirrhosis patient. I was treated incorrectly by a blood doc and that delayed me getting a proper cirrhosis diagnose which put me at risk. There are a number of liver diseases that can produce the symptoms you described and it is important to be properly evaluated. Push that process along if you can but you should learn about liver issues. Here is a link if that is of interest.

fattyliverfoundation.org/

Wayne

[Sheluska in reply to nash2]

Thank you for your insight. I have my MRI tomorrow, and pushed for an earlier date to get results, so my appt is March 17th where I will get the MRI and fibro scan results. Thanks also for the link. Very informative.

[Sheluska in reply to Sheluska]

Hello, I had my MRI. Where I live you can sign up for an app that will send you the pictures and reports so you have them. Although I haven't met with my DR. until Marc 17th, I was wondering if you had some insight, or could even provide me with questions you think I should ask the dr. about.

.HEPATOBILIARY: Diffuse decrease in signal intensity of the liver on the out of phase sequence compatible with mildhepatic steatosis (fat percentage: 12%). Hypertrophy of the left and caudate lobes with relative atrophy of the right hepaticlobe and widening of the hepatic fissures. The liver capsule is mildly undulating. Findings are compatible with earlymorphologic changes of cirrhosis. The liver dome is incompletely imaged on the post gadolinium sequences. Allowing forthis, no suspicious lesions. Specifically, the focus of arterial enhancement described on prior CT from May 2021 is notvisualized. Gallbladder is normal. No intra or extrahepatic biliary duct dilatation.

Impression:

1. Cirrhosis. No suspicious hepatic lesions allowing for incomplete imaging of the hepatic dome on the post gadoliniumsequences. The previously seen LI-RADS 3 observation on CT from May 2021 is not visualized

.2. Stigmata of portal hypertension including splenomegaly as well as small paraesophageal and perigastric varices

3. Mild background hepatic steatosis.

Thank you in advance for your insight.

[TNWONDER]

Hi Sheluska - i'm compelled to respond to your post given that you stated that your ferritin levels are "very high". I'm also quite astonished that your hematologist seemingly has not employed genetic testing to confirm whether or not you are a homozygote or heterozygote for the C282y gene which is indicative for hereditary hemochromatosis. I am a compound heterozygote and my ferritin at its highest was at 660. I also had a fatty liver. Hemochromatosis left untreated can lead to a host of severe illnesses especially impacting the liver, cirrhosis among them. The good news is that its VERY treatable via phlebotomy. It took me about 6 months to get my ferritin down in the normal range - now i'm maintaining it around a 150 level. Initially i went for a phlebotomy every few weeks but now i go maybe 2-3x per year. I also changed my diet, eliminated sugar, white carbs, meat etc and i've completely eliminated my fatty liver as well. I would ABSOLUTELY and IMMEDIATELY get with a new hematologist and ask to be tested for hemochromatosis ASAP!!! Hope this is helpful

[Sheluska in reply to TNWONDER]

Hello TNWONDER, Thank you for your response. I did have all the genetic testing with the hematologist, for the two years I was under him. Everything came back negative. As well as some other very rare disorders, that they could think of. After all that testing, I was referred to my GI/hepatologist. I have had scopes, all clear, and ultrasounds, ct scan, blood work and most recently fibroscan and MRI yesterday. I will be getting results on march 17th. I do have an enlarged spleen and have been told that this could be a direct correlation to my low platelets. I am glad to hear about your diet. I have since started seeing a functional medicine dr. as well, and she has asked me to go vegan for 6 weeks, to see how I am feeling, ( the exhaustion really interferes with my day to day. I can work, which most days is 8 to 9 hours, and then I am spent). I have been pretty impressed with myself on how I have been able to create and eat vegan meals, but I am getting pretty done with beans! Thank you again for commenting, anything I can learn I am grateful for.

[Mikes21]

Hi I recently had a ct and they noted I have fatty liver and noted a 9mm soft tissue lesion on my liver. My gastro thinks it’s fat tissue and we do another ct next week. I’m worried since that lesion just showed up and hope it hasn’t grown. Any thoughts? My labs are normal even GGT. Thanks and hope you are doing well