iron in the liver
Posted , 5 users are following.
Hi guys, so I just got results of MRI of liver...I don't know what to make of it. It shows I have severe iron deposit, 21.2%. I guess normal 1-7%. Due to this, the MRI could not show if any damage is there. So now they want to do a HCC screening. Anyone else go through this? What am I to expect here? Oh and does anyone else get really bad heartburn the day after a phleb? Mine have been terrible...I have gerd anyway but it's been really bad!!!
0 likes, 5 replies
Golak deb94549
Posted
If they could not asses your liver damage by the MRI, I believe what they meant by HCC screening would be a liver biopsy. They basically check the tissue under the microscope and look fo damage in your cells.
About the reflux after phlebotomy, there is no reason why your reflux should worsen afterwards.
Keep hydrated and avoid lying down immediately.
Hope everything goes well with your biopsy.
kristin07815 deb94549
Posted
I had a very high iron saturation level 20+ years ago. I had a liver biopsy at that time to see if there was any damage. There was not. Nothing else was done. In 2016 my iron levels were off the chart so I finally had a phlebotomy which helped lower all the liver enzyme numbers, etc. Keep in mind no doctor ever recommended this, I did it on my own by going to Red Cross. However, also at that time my platelet count had decreased considerably so the doctor ran an AFP test (tumor marker). It was pretty high so I had a CAT scan and then an MRI which showed cirrhosis of the liver and a small tumor. Just prior to that I finally had a genetic test performed to see if I carried the gene(s) for hemochromatosis - my results came back as positive, but only for one of the markers, not both. No one has taken the hemochromatosis seriously. It's been very disappointing and frustrating because it's obvious the iron levels have contributed to my liver issues. There number one and basically only diagnosis is alcoholic liver disease even though I never abused alcohol. I hope you have better luck than I did.
FYI - I had a procedure performed to eradicate the tumor, which worked. My first three month check up everything looked great. My recent blood test shows that the AFP is high again and the platelet numbers continue to decrease. I have an appointment for another MRI next week. I'm praying that it was just a false reading. I have never had any symptoms. I feel great, I play golf, I live a full and happy life - it's just the uncertainty that gets to me. They never have any answers for me except that at some point I may need a liver transplant. Great, huh?
sheryl37154 kristin07815
Posted
Hi kristin, I know a lot about genetic haemochromatosis but no personal experience with liver disease that is not caused by haemochromatosis that has occurred to other people. What I have learnt along the way is that cirrhosis of the liver is repairable. You have to find the cause. It is not haemochromatosis. The inflammation is causing the high ferritin levels. In the absence of homozygous haemochromatosis, your liver issues are causing the high ferritin. Of course, I am sure your dr has told you not to drink alcohol until your liver is repaired.
Sugar and starchy carbohydrates also cause NAFL. Giving blood about every 3 months (as allowed by Red Cross) will not do you any harm and may help you. You don't have to have haemochromatosis to benefit from blood donation. They will not take your blood if you have cirrhosis of the liver. Perhaps another avenue is possible for you - e.g. from a pathologist via a request by your dr.
Additionally, you should expect some treatment advice and assistance from your dr. It can be treated. You don't have to remain cirrhotic until you need a transplant. Are the tumours benign, or cancerous?
BTW, what was your saturation transferrin % (TS%)? That is an important marker.
kristin07815 sheryl37154
Posted
In 2016 my saturation level was around 83% and my serum ferritin level was 999+ prompting "ALERT" "ALERT" notifications on my blood work. That's when I went to Red Cross and had my blood taken. I later saw my hematologist who ordered another phlebotomy. Everything went down as expected. My saturation level is now back to around 51% and serum ferritin is 318. I have an appointment to get another phlebotomy next week. So, I'm told that my liver issues can also cause these high iron numbers although it does not make sense when they were high in 1997 and my liver was fine?? Very frustrating.
sheryl37154 kristin07815
Posted
Going back to your genetic test - "my results came back as positive, but only for one of the markers, not both". It sounds like you mean you are heterozygous C282Y or H63D, i.e. a carrier only. Please advise if that is not correct. Who requested the genetic test? Your dr or your haematologist? Maybe you should request another genetic test, just in case the first one was wrong.