Yes, your ferritin level is very high, but I believe that you can drain the ferritin problem in a couple months. My ferritin level dropped from 600-1000 to 13 after 8 blood donatations in 9 weeks (my preferred descriptions of phlebotomies, sounds a lot better and they are the same thing LOL).

The combination of Hemochromatosis and alcohol is bad news for your liver and other organs. Has your doctor ordered either a MRI or liver biopsy? IMO, you need one or the other to check the status of your liver. Either one, I believe, can tell if there is any damage from either the iron or alcohol.

You need to stop drinking. I had to stop drinking a glass of wine once in awhile.

Tough situation..........

Sorry to hear you are so worried. Can you access help with the drinking if that’s what you decide to do. I have a double gene for haemochromatosis but got my iron levels down fairly quickly with phlebotomists and increasing leafy greens. I attribute my low levels now to taking curcumin.

Hi. Thanks all for you responses. Sorry I haven’t gotten back sooner. This coming week is my third phlebotomy, and labs and doctor...woohooo.. So far they’ve had to try both arms to get the 500ml. I think the term is ‘shy veins’
I feel like a burden..they’re busy enough there.

I know your pain. I have small veins and have had paid the price many times especially when doing a test requiring no food or water after midnight. Being water drained causes a real problem.

Therefore, I drink a lot of water in the morning and eat a big lunch before going to the blood center around 12:30. The blood center that I go to have a rule that the person inserting the IV have one shot and if they miss then you are sent home. Nine donatations and they have not missed. I wish that I had the same luck all the other times.

Good tips on the shy vein deal...thanks. As I’ve said, my level was 2400ish in August. I’m going for my 3rd phlebotomy this coming week. My question is: I still eat some foods with iron, but not supplements, or anything too high (like Capt. Crunch

There are several opinions about eating foods with iron. The best opinion that I have read is from Dr. Chris Masterjohn, Ph.D. . Doctor Chris has the same single gene version of iron overload as I do. He eats whatever he wants and just plans on donatating blood 3-4 times a year. Doctor Chris' Ph.D. is in Nutrition of some sort, I do not remember for sure. He used to be a vegan until he realized how bad that was for his health and now eats a steak every day and liver at least once or twice a week.

Now, there are others that have the two gene version and their bodies soak up iron like a sponge. They use several methods to block, or at least reduce, the absorption of iron. There are several methods from drinking tea or coffee with meals to taking a calcium pill when eating a lot of meat during one meal. If you search hemochromatosis you should be able to find many resources and guidance.

Have you had a genetic blood test for hemochromatosis? If not, ask your doctor for one. Just a standard blood test and insurance has paid for mine.

Once your ferritin level drops back to normal, see how long it takes for it to go back above normal. If it takes months like mine did, don't worry about iron in food. If it jumps back up, then you will have to be careful when eating foods with iron. It is a try it and see situation. Remember that hemochromatosis is a genetic problem that you have had since your birth, your doctors just never checked before. My doctors duud the same, did not check. Once I found out how serious iron overload is I gave my current PCP hell. I think he tests forit now. Everyone needs to be checked at least once.

I know that it is confusing, but it is manageable.

Thank you very much for that information. I’m pretty unorganized, but my wife is not and does research it online, but you never know too much.

I’m diagnosed as an HH hereditary hemochromatosis. I need to remember to add that when I ask questions..it helps you answer.. sorry

I had a ferritin reading of low to middle 2000’s in early August. I’ve had 2 phlebotomies and after my blood labs yesterday (I have another phlebotomy in 3 days), it says my level is already 1441. I am very surprised. Anyone have anything on this?

all iron over load is not genetic. i was tested and mine is not genetic. i acquired it due to numerous blood transfusions received due to chemo.

I believe that "dora62" is correct, but I think most cases are generic. I have no idea what percentage of cases are generic vs. other causes. I assume the cure is the same, drain the swamp at your blood donation center, but hemochromatosis is the gift that keeps on giving.

Dora62, can you remove the access iron and then be done with it?

I was diagnosed in 1997 as a full blown c282Y/C282Y patient with a ferratin level of almost 7000. I was bled twice a week for about 6 months and have stayed reasonably low ever since by having a blood test and a bleed every 3 months or so. I reduced my red meat intake and only eat it with a spinach salad as the oxylates in spinach reduce my iron absorption (so I am told). Like wise I have reduced my liquor intake but still drink a bit, it's bad for me but I'm still here. There is a cookbook called The Hemochromatosis Cookbook available online that has a lot of dietary information in it that may be useful.

Irony, just to show how weird hemochromatosis is, I have the one gene defect version and have iron overload (another word for hemochromatosis) and my wife has the double gene version and does not have hemochromatosis. My ferritin runs high and needs constant monitoring and drainage, she has low ferritin and had to take iron supplements to get her ferritin back to normal.

My ferritin was about the same level when i was diagnosed, it took me over a year to get down to a lowish level and then almost another year to get to below 50, The second year was much slower as after i reached about 500 (i think it was) my old nurse who was something of an expert (she only did taking blood at the hospital) reduced the pace to every 2wks, 3wks then monthly & bi monthly at about 100. She said this was to prevent becoming iron avid & allow your body to adjust slowly. I recommend going slow, there have been too many people that have become iron avid due to being bled too fast when their iron was lowish.

I wasn't alcoholic but did over indulge & binge luckily my liver seemed OK and scan showed only mild signs of damage, despite getting pains in my liver after a big night out from around age 30. Recently I read a paper on why this might have been, saturated fat is protective! (I never cut back on saturated fat food though did follow other common dietary advice) eg
https://www.dailymedicaldiscoveries.com/can-saturated-fat-protect-your-liver/
Note the bit where is says repaired (though we aren't rats)
Obviously I'm no doctor so you should discuss consuming a higher saturated fat diet with your doctor (he'll probably recoil in horror) or do your own research like I did, I've now stopped using ALL seed oils (vegetable oils) except olive & avocado on salads etc and use ghee/butter/suet for cooking. The biggest issue though is all the so called vegetable oils hidden in processed food, Check out the Fat Emperor
https://thefatemperor.com/