Waiting for gene test and not sure if I might have H

Hi, and welcome to the forum. I am also a newbie here but will share what I know. You inherit one gene from each parent. To have HH you must inherit two mutated genes, one from each parent. If the parent you mention is homozygous (two identical mutations, C282Y for example) and you inherit the same mutation from the other parent then you have HH. If you have two different mutations then you are considered compound heterozygous, and if you have just one mutated gene you are heterozygous. If one parent is homozygous (HH) you are at best heterozygous (carrier), which predisposes you to a slight elevation in iron.

i recommend that you read all you can, from this forum, and other places and educate yourself.  HH can be tough to deal with.

Best of luck!

Thanks,  I will check what other people wrote.  I’m lucky as a parent has gone before me and so I have someone to talk to about it.

I have been doing research since we found out it’s hereditary.  That’s why I’m a little consernd with my test results, cause it can be a little confusing...  and wondering did people have to wait for the gene testing before starting their phlebotomy.   Or maybe the dr just saw their results and started ahead.  I mean my ferritin jumped in only 5 months,  what’s it going to be in another 4?   

Your iron seems low and doesn't match the high ferritin, which usually can't get that high without hemochromatosis.  My doctor told me it is possible to have both anemia and HH, which could be where you are, but that's just speculation from a non-clinical person.  Your ferritin is pretty high to where they would normally definitely need to be doing phlebotomies, but it would take your iron down, which is so low.   The ferritin may go down on its own due to the low iron, but I hope someone who knows more than I do replies, as it seems unusual to me. 

Recently, I also had elevated ferritin (around 650) with normal iron levels. My issue appears to NOT be a case of iron overload but rather liver toxicity caused by niacin which I had been taking for cholesterol for several years. I started a discussion in this forum several days ago “Heterozygous and Niacin”. I would consider other sources for your issue such as supplements, medications, alcohol, etc.  I believe that damaged liver cells release ferritin (also B12j which is stored in high concentrations in the liver. I also believe that the ferritin will break down into its root form...iron, which would then lead to increased iron levels. (This last part I’m not sure of.) My Doctor was very quick to jump to the “iron overload” diagnosis, although I am heterozygous, assuming this was the cause of my liver damage without considering other explanations. There is no question that liver damage will present with elevated ferritin levels, the question to ask is what is causing the liver damage?

Thanks all.  Yes,  it does seem strange.  I’m not sure what would cause my liver to misbehave.  I don’t drink and only take one med for active bladder (told that doesn’t affect it) I don’t take any supplements.   I guess I’ll just have to wait and see,  but I m hoping they get rid of some iron as I seem to have some of the symptoms of HH.  

That’s why it’s rather odd.  As a parent has it, I have been watching my iron intake.  Rarely eat bread (except for an English muffin in the morning,  but rarely eat sandwiches),  had tuna once this year,  haven’t had orange juice for a year,  started drinking tea to help,  don’t drink wine/alcohol,  cut out high iron veggies (I miss my spinach),  I’ve never liked cereal or liver so don’t touch them. I’ve been checking the labels on everything.  Stopped eating some foods I like just to stop the iron.   I’m not going to donate blood till it’s all figured out.  Want to give my dr.  the clearest picture of what’s happening.   Just wish the gene testing wasn’t such a long wait.