Been diagnosed today!

Kerrie,

Just out of curiousity, how high was your ferritin at diagnosis? Mine was about 600 (they also caught mine early, but I was 21).

I've been told by two separate hematologists and by a nurse that was head of the hemachromatosis department and no, I did not need to change my diet.

They all said that obviously don't eat a lot of things like spinach and red meat, and especially not liver and beets, but that otherwise it wouldn't make much of a difference, so just go ahead and eat whatever.

Although I have read that you should never eat raw shellfish as there is a bacteria in there that adores high iron environments and it can make you sick. So always no to that one.

In terms of the drinking however, although it was caught earlier for you (I believe women are generally diagnosed after menopause), I would withhold on that until you get more results. You don't want to do anything that could cause damage to your liver if there's a chance that damage has already been done.

Hi Megan

my level today was 690. I don't know my saturations though.

I don't drink lots just a few glasses of red wine over the weekend. But I will abstain until I've had more tests. 

My liver results in my routine blood tests have always been ok so fingers crossed!

My mother in law was at 750 when they found her HH, she had about 12 phlebotomies and her numbers went down right away, she is 58. My brother in law also has it and he doesn't follow any sort of diet and his ferritin went up 100pts in 3 months. The doc says that if you don't floow any diet then you get more blood drawn, if you follow a HH diet you have less phlebs, so the coice is yours. However, knowing what the excess iron does to your organs, I would limit the iron as much as humjanly possible if it were me. My husband has HH as well and he follows a very strict diet as his liver has already been destroyed. He is 38. Stay away from pain meds and alcohol.

Thanks for that Angela. Good advice given. basically follow a descent low fat diet and stay away from the iron rich foods! Your mother in law must of been doing something right!

The good news is that women with Mensus don't have as many issues, she had two surgeries previously that had quite a bit of blood loss. The fact that you had children probably helped you too. My children are being tested but they are both girls so if they posess HH too they will not build up iron as fast as males. I don't know how the iron effects weight as all three of my family members that have HH are quite thin but you do have a higher risk of developing diabetes, so keep an eye on sugar levels.

Hi Kerrie, if you have been told you have HH (Hereditary Haemochromatosis), which only a genetic test can reveal, what HFE gene mutations do you have?  As the other ladies have told you, if you are still menstruating that helps a lot.

However, if you are struggling with your weight then you might have a fatty liver which is causing its own increase of ferritin iron.  Knowing your Trans Sat % is important - it will give a good indication of this problem.  Always ask your dr for a hard copy of your blood tests so that you can self evaluate as well.  Self education is so important so that you just don't rely of what the dr knows (which may be very little) and everyone is different, so you have to make it work for you.

It is usually not recommended to reduce iron in diet, unless you eat a lot of liver, or red meat every day (or clams, which have an inordinately high iron content that I think it is a typo).  There is iron in every food except cream, creamy cheese and whiskey and we can't live on that!  (Unfortunately!)  Google Iron Disorders Institute.  They have a lot of useful info including books which you might find in your Library or can be ordered in for you.

It is common for people with herediatary haemochromatosis to be thin but not from venesections.  I think their digestion/intestines are affected - I am one and I can't find the answers - drs don't know either.

People in my group who have high ferritin levels because of fatty liver have had success reducing their ferritin levels (by the hundreds) by not eating fatty foods (good fats are essential), and eliminating sugars and starches which convert to fat if you don't run 'marathons'/e.g. a lot of hard physical work every day.  They also lost their bellys and found their waists again too.

I am very interesting in knowing your full Iron Studies results and genetic test results, that is if you don't mind sharing.

Thanks Sheryl

I don't have much information about the breakdown of the genes all I know is that I have both the genes he didn't give me any sat% or anything like that I will try and get tht information off him next time but I don't see him for another three months.

A few years ago I was told that had IBS and for years my thyroid has been top end of borderline but not definitively high so wondered whether that also has something to do with my weight.

I have had diabetes checks and that is fine so that's good! I don't take sugar or add it too anything either so just get that from natural fruits. I don't eat processed food so don't have overload from any of them.

thanks for the advice everyone I will keep you informed when I get hold of my results!