Posted , 5 users are following.
After receiving the results of a routine blood test my GP discovered (after several more tests) I have high ferritin levels and so sent bloods to haematology and they sent back the attached letter. I would be very grateful of any help explaining what it means. Even my GP and his colleagues are confused!
0 likes, 6 replies
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marie86421 steve44387
Posted
This means you have 1 copy of C282y, you need 2 copies to load iron. You do not say how high your ferritin is. It is possible to load iron by having other gene mutations. I have no copies of C282y but 1 of H63d on the HFE gene and 1 copy of SLC4A01 on the FPN gene. The FPN gene mutation is what is causing me to load iron, which is haemachromatosis type 4, is quite rare.
You might need further testing.
steve44387 marie86421
Posted
Thanks for the reply although im still none the wiser. I seem to remember that my ferritin was over 700??
Again sorry to be vague but im really unsure if there is actually I should be worried about?
Thanks
Steve
marie86421 steve44387
Posted
Hi Steve
The fact that your ferritin is raised suggests an iron overload disorder. Sometimes, inflammation in the body can also cause high ferritin.
The HFE gene is involved in the regulation of iron absorption and the main mutation is known as C282y. Generally, you need 2 copies (one from each parent) to develop haemachromatosis. If you have 1 copy like yourself, you are heterozygote. If you have 2 copies then you are homozygote. There is also another mutation on the HFE gene which is called H63d. Having 1 copy of this usually means that you won't load iron as with 1 copy of C282y, but having 2 copies of H63d you will load iron.
If your ferritin is high because of haemochromatosis and not inflammation then you will need to have regular phlebotomy to reduce the iron stored in the body which is toxic and damages organs. The normal range for males is 15 - 300 and females 15 - 200, so your level at 700 is considered high.
The organs affected from iron overload are the liver, heart, pancreas and endocrine glands. If left untreated you could develop fibrosis (hardening) of the liver, cirrhosis of the liver and cancer of the liver. The heart can be damaged where you could get heart failure and irregularities of the heart beat.
Damage to the pancreas can lead to diabetes and the iron can also affect your joints and cause arthritis.
It is important for you to find out if you have inflammation from an infection or if you are loading iron to cause your high ferritin level.
You may need to get a genetic test done to check for ferroportin disease, haemachromatosis type 4. My case turned out to be this.
Your doctor should be referring you to a haematologist so that they can carry out the necessary blood tests, ultrasound scans, ferriscans and fibroscan. The ultrasound is to check your organs for sign of any damage caused by the iron overolad. The ferriscan is a special MRI which checks to see how much iron is in the liver and the fibroscan is the latest alternative to a liver biopsy. This is a cylindrical object which is held against your skin and sends waves to the liver. A measurement is then recorded and according to how hard the liver is denotes how damaged it is.
I think you should be asking your doctor to refer you. The sooner you get diagnosed the better. There are a number of good internet sites that will explain it better than I can, just google haemachromatosis.
Good Luck
steve44387 marie86421
Posted
Thank you so much for taking the time to explain this so clearly. My next will be to ask my gp for more tests. As you say there will be a reason my ferritin is high it’s just a case of working out what it is.
deb94549 steve44387
Posted
Have the genetics test done. My levels are over 3000 and I have 2 negative genes. I need phlebotomies every week until it comes down... I'm very scared. But you may be lucky as it could be all in what you're eating.... Do you eat a lot of beef and pork? Cereal? Leafy greens, kidney beans... Go through and see what is in your food. But I would have family members also get tested since they are at risk too. Also, tumeric green tea, calcium are good to take to keep iron from overloading.
sheryl37154 deb94549
Posted
Tumeric is said to help decrease inflammation which increases ferritin whether you have HH or not. Tea, coffee, calcium foods (e.g. dairy) are best eaten with meals in order to help reduce the uptake of iron. Avoid Vit C supplements with meals. I take mine last thing at night or else I end up with a sore throat. It is an antioxidant which are important to us.
I have been dealing with HH since being diagnosed in 1998 after a 9 year delay while I had severe HH symptoms. When my hips broke up, I was diagnosed. I read a lot of research, talk to a lot of people with HH, attend HH conferences, talk to researchers, etc. Drs, as we know, do not bother to educate themselves too much about HH and give, at times, very bad advice, so we have to educate ourselves.
Marie has some good advice to Steve and he still has a way to go to get a proper diagnosis - whether it is from high inflammation in his body, or ferroportin which is difficult to diagnose because the medical profession often do not recognise/accept its existence.