Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

518 Members
2,097 Posts
0 Online
Gastrointestinal System
/ Hemochromatosis Support Group

Newly diagnosed

Judebythesea
Judebythesea

Goodmorning everyone....I’ve recently been diagnosed with heteozygote hemochromatosis. My numbers were not that bad Ferritin 319, Trans Saturation 66%. My doctor started me on phlebotomies which I have ad 3 so far. My level dropped down to 227 after 3 phelbotomies at 1 phlebotomy every other week. Doctor is suggesting we get my Ferritin down between 50 to 100. Is this all normal...I also found out my son is a carrier as well as one sister....my other sister blood hasn’t come back yet. I’m still trying to wrap my head around all of this. I was told I have the best diagnosis of hemochromatosis because I have 2 different genes C282Y / H63D (rather than C282Y/C282Y). I’m not sure I understand that do any of you? Additionally I’m trying to find a cookbook for this condition.i did find one by Garrison I believe...it’s a good book but I try not to eat processed foods and want to eat more naturally but finding to know what to cook for dinner has become a bit of a chore for me...Any suggestions....I hope all this is appropriate for this group if not just let me know...I feel like in a world by myself right now with diagnosis. Some people are telling me it’s not right to have phlebotomies....

looney1
looney1
Hi Jude and welcome. I am heterozygous c282y and find this is quite a manageable disorder. Eating unprocessed food with lots of vegetables esp leafy greens is a good strategy. Tea and coffee as well as red wine with meals stop the absorption of iron to an extent. Turmeric and coriander are also very helpful. I found once I got my levels down through phlebotomy these measures helped keep them down. Good luck.
Judebythesea
Judebythesea
Hi looney1,
Thanks for input....yes I agree it does sound like it is a manageable disorder....I just hate thoughts of all the doctor visits, blood letting etc....I usually don’t have doctor visits but once ear for check ups..now blood testing several times a years, phlebotomies .... I’m just retired I don’t want to be tied down but the way it’s going I’ve had 3 phlebotomies and my number is down by 100 now if all goes well in December I should be able to stop phlebotomies so all is good. I’ve read coffe and tea we’re good with meals but didn’t hear that wine was so I find that interesting because aren’t we not suppose to drink alcohol? I’ve tried Tumeric capsules before and it made my tummy burn...I haven’t tried coriander though so you say that helps too? How long have you been dealing with this...do you have any references for cookbooks that focus on HH? Thanks for your input..
Cap6
Cap6
It is a manageable disease once you get to the maintenance level. Celiac, which I also have is manageable but both of them are a real pain! No joke intended either.
Interesting as I was told no alcohol at all, including wine. But maybe that depends on your levels. I started out at 1200 so maybe that why the dr said no.
You might want to check out Practical Paleo cookbook. Lots of great easy (and I'm not much of a cook!) recipes. Good whole foods. I concentrate on the chicken recipes as the dr told me to ease on any red meat but eben the red meat recipes are pretty easy to sub with chicken.
Judebythesea
Judebythesea
Hey Cap6....thanks, I think I get it’s manageable alright but having to not eat meat or drink is what I’ve been told. I always enjoyed a nice steak, pork chop with Whole Foods..even glass of wine with dinner or even cocktails with friends at times but since I’ve been diagnosed I’ve been told not to do that so I I haven’t, but it’s all so weird...I get an order for physical for a new doctor and bam I have this...it’s really a surprise to me. I found it awkward at Thanksgiving to make a decision if I should have a glass of wine with dinner...who would of thought I’d have to make a decision based on this crazy diagnosis that no one knows about! Like I said I was diagnosed with pernicious anemia in 1985...all docs asked if I had a drinking problem...I told them no then they said my numbers were like that due to pernicious anemia....Really all they had to do was check my iron but they didn’t. I find it interesting you referred me to the practical paleo as isn’t that a lot of meat? Which my doc says stay away from...is that the recipie hook you use with substituting red meat with chicken..I used to be on the paleo a few years back. Thanks again
Cap6
Cap6
Hi ~ Yes, I use Practical Paleo a lot! I have several other paleo books I use but this one is my fav.
I had good news Friday! My levels are are down to 480 and dr said I can have 2 "reasonable" glasses of wine a week. He said that everyone has to live even with a disease. Yay!! I am still being totally careful and only had like 3 sips last night. Scared I guess. lol
HemoSchwemo
HemoSchwemo
Hi Jude, I was diagnosed with HH in Germany in 2004 after being dismissed by my local London GPs for almost six years (had they bothered to do a CBC they'd have seen the iron spike). I want to save you some pain but since everyone's different, I may not be able to. What I can share is that at the beginning I was overly concerned with diet: I stopped eating red meats, alcohol etc and caused no end of social hassle, unnecessarily as I was later to discover. Iron is in everything. I now eat normally (which for me was always fresh produce but I eat bacon too and other red meats now). Thirteen years on and my annual bleeds are usually no more than two per year. Eat what you like and keep an eye on your ferritin/symptoms. Now mine always dovetail. When I start getting joint pain, I check it, bleed. Wait another six months-ish, repeat. I had that diet book. Save your money. You'll feel much better once you're in a pattern of steady maintenance. All the best!
Judebythesea
Judebythesea
Hey HemoSchwemo! Thank you for your support and feedback. I’m trying here with diet....not eating red meat...only chicken and fish but in reality everything has iron...I see references not even to eat those too! However, there’s no way to avoid iron I guess. I’m not a vegetarian or vegan so the diet thing is confusing and a hassell...I mean I never know what to fix for dinner...I’m inclined not to eat out because I’m not sure what they are cooking with but it always tastes so salty but I miss going out to break bread and a drink with friends but I’m trying..at times I feel like saying screw it and eat a huge ribeye steak! Oh and bacon I miss that too. But oh well...I’m feeling a bit upset I got this from my parents and my two sisters don’t. Well one sister is a carrier one is not. I have made a decision that on Christmas I will eat a small piece if ribeye but I will feel so guilty. Anyway do youknow if there are any blogs where people chat about HH? Thanks again!