Newly diagnosed HH with C282y

Barb, forget the cabbage - just eat it.  There is no other treatment for haemochromatosis so far except phlebotomies.  Researchers in Australia are trialling a synthetic hepcidin to replace our hepcidin that does not turn on to turn off the iron absorption.

If it works, there will be a time lag before the powers that be will allow it to be used. The chemical chelators are only for those people who just cannot have phlebotomies and they have side effects.

Prof Pierre Bristol's research team recommend CoQ10 and Vit E to help repair the mitochondria damage that occurs from having high TS% for more than 6 years after de-ironing.

It is not recommended to reduce your intake of iron from natural foods - but avoid fortified foods and iron supplements.  Sugar and starchy carbohydrates cause fatty liver which raises your ferritin levels.

It is best to keep having venesections at regular intervals - don't let drs wait till you get a high level and order a phleb ad hoc, especially if you are C282Y/C282Y.  Unless you are H63D/H63D which normally eventually really slows down after de-ironing.  Even C282Y/H63D needs regular phlebs but perhaps 4 or more months apart.

So, for a long while, we are stuck with phlebotomies, and each time, I consider myself lucky it is not chemo.

If you are having HH symptoms which you just cannot get past, let us know.

 There are no sure fire answers but there could be things you could try.

Hi Sheryl when does "de ironing"start my ferritin level is now 122 from 3900

Thx Johan

 I live in Africa still to meet a doctor that understands the HH condition.Battle to get phlebotomies done as the general comment is my ferritin level is within the acceptable range .Fortunately have access to reliable blood testing facilities .

So the question remains when will I know I am de ironed.

I know the hemoglobin is a big deal and also the hematocrit, it’s very frustrating so I feel your pain. Hang in there.. 

All medical research says that ferritin of <50 is being 'de-ironed'.  Then you can find your optimal level at which you feel best.  You may have to make notes about how you feel post vx and before you next one is due.

If your TS% continues to be high, and you still feel not your best, then be persistent with 3 monthly venesections.  You might have to find some medical research to support your case.  Google "long term high TS%" and read Prof Pierre Brissot's research, print it and take to your dr.

I had forgotten about the following page - I always used to refer people to it.

I cannot give you the direct address but google "Iron Disorders Institute", then click on Helpful Forms and Charts, then click on Haemochromatosis Reference Charts.  Print and also take to your dr - page two is the most important one for him.

Good luck.

I might be wrong but there is definitely no medical research that writes of it.  I get notices of new reports by reputable researchers sent to me.  It might be calcium tablets that you can get much cheaper elsewhere.  They are also talking about a component of eggs, so maybe we should eat more eggs.

Just keep having venesections - they are the only medically supported way of treating haemochromatosis successfully.

I am going to a conference late August, so I shall ask about it.