I was wondering if anyone knows anything about hemachromotosis? I finally saw a liver specialist in the states. She said I may or may not have fibrosis based on my ultrasound but she suspects I do not. I think she based that opinion on all my other variables, FBS, BMI, age, weight, liver enzymes etc.
She ordered a fibroscan which I have yet to schedule. There is only one machine anywhere near me and I am in the process of moving my elderly mother and daughter into new homes...a little overwhelmed. She also ordered some more extensive bloodwork than I've had in the past. My serum ferrit results were high and I keep reading about hemachromotosis, or iron overload. The other iron tests were ok, although on the high end of normal. Two summers ago one of the more routine ones was high, I was test because I was bleeding from fibroids and I thought it odd that it would be elevated when I bleed for so long, I would have I'd be anemic.
So if anyone can shed any light on iron overload and or hemochromatosis and how it affects the liver, I'd appreciate it. Thanks!
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Lara86
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Hello Lara, glad to see your getting a good liver workout carried out. The Fibroscan will be a good starting point. I was once told by a consultant over here in the UK that there was more iron to be found in a damaged liver than in a healthy one.
Hi Lara, raised ferritin levels on their own can be caused by inflammation somewhere in the body aswell as Haemochromatosis. Usually with haemochromatosis your transferrin saturation % would also be raised. My ferritin is raised along with my transferrin sat % and I'm currently waiting for genetic testing. The fibroscan is a good thing, your Dr sounds like he's on it. I'm glad you are being thoroughly checked it's best to know with iron overload as if not put into check it can damage not just your liver but your heart, joints, brain and pancreas. The good thing is it is easily treatable 😊. I have found the following website useful haemochromatosis.org.uk/ I know you are in the states but same info applies regarding symptoms explanation and so on. Let us know how you get on, all the best to you. Xxx
There has been growing awareness of Haemochromatosis over the last 5 years as my family have a history of the condition.I often talk to people about it to assist with awareness as it can cause signifcant health issues but once picked up it is easily treated.
There is a genetic test that can establish if you have the gene.
Stacie33 is right. Ferritin is a non specific indicator of inflammation in the body. I have arthritis throughout my body so some degree of inflammation is always present with my ferritin level reflecting this.
My ferritin level has been raised in every blood test I've ever had but I don't have haemochromatosis based on a test a doctor ordered to check on this. As long as your ferritin level isn't excessively high e.g. over 1000 μg/L and your transferrin saturation is within the normal range it shouldn't be a problem. If your transferrin saturation is high along with your ferritin then you may have haemochromatosis.
The highest my ferritin level has been was 535 but my transferrin saturation has always been in the normal range. In my most recent blood test my ferritin level was 385 after 9 months of living totally clean of painkillers and 2 ½ years since I last drank alcohol. I probably won't ever see my ferritin level go below 300 the upper limit of the normal range but I'm not concerned. A ferritin level over 1000 μg/L may be cause for concern.
Hi hemochromatosis badly damages the liver the damage is the same as too m uch alcohol the liver cannot repair the damage, if you have it very badly as my wife did you will set metal detectors off in airpotrts iron levels will be very high not high level of normal
Dave
Lara86, Most of what people said is correct, however, let me shed a little more light on high ferritin levels. When you have haemochromatosis the gene is carried to you by a parent. Ferritin levels even in the upper limits of high isn't good because that is extra iron sitting in the body. Most doctors don't do anything about it unless it is over 1,000 which isn't a good thing, that's because general doctors know very little about iron levels, but if you go to a liver specialist they will get rid of the iron by bloodletting(taking blood from you until you reach levels in the teens..optimal levels for a women is (50-80). Make sure your saturation is in the range usually not over 50%. High ferritin and high saturation usually equal haemochromatosis. Also, many give blood to the local red cross and that will decrease your ferritin to a healthy level. Make sure you are giving whole blood and not plasma or platelets because whole blood is the only donation that decreases ferritin levels. Once you give blood, wait 2 months and check your levels before giving again. This can lower your ferritin by 30-50 points so that's why it is good to check your levels before giving again. Ferritin doesn't leave your body on its own so stay on your doctor to either give you a prescription to a bloodletting or you go give blood yourself. it doesn't matter that your blood isn't over the limit, you should be in the lower middle range.
There are several things that cause high ferritin...arithris/inflammation from liver problems..diabetes...it doesn't matter what the cause, make sure you don't allow it to be over 100.
yes I have it - diagnosed too late - now full blown HCC and the end stages - I got the iron down from 9800 to 250 (South African scoring system) from weekly phlebotomy for 2 years but again too late
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