Ferritin 573 ug/L - Is this high? Venesection feel GREAT!

Hi Mattyv,  It appears that your genetic test indicates that you are a carrier only (heterozygous - 1 HFE gene), and your dr is right in that your high ferritin level is not caused by Hereditary Haemochromatosis.  High ferritin can be caused by inflammation, fatty liver, excess alcohol, infection, malignancy, life style issues, etc.

Other people with the same problem but do not have HH have felt a whole lot better after a venesection or donating blood, and donating blood is good for you but it may not fix the cause.  Your dr should be investigating this.  Say ok, if it is not HH, then please find out what is causing this.

Your ferritin has been building up for years, it is not an overnight event, like a sudden infection would cause.  Some people who have had glandular fever, which can affect the liver among other organs, causing high ferritin and the effects can hang around for years.

If you had HH (say the genetic test was faulty), then your Sat % would be more than 50%, so it does rule HH out.

If your dr does not order any more venesections, go to your Blood Bank and donate every 3 months, but as I said, your symptoms warrant further investigation.

Let us know how you go.

UPDATE:

Still feel great after plebotomy almost one week later. have done some reading and there are unkown chromosomes or mutations that may cause iron loading. There is alot they do not know. I have seen another doctor since the last post and he reported to me 4 of his patients that have the heterozygous - 1 HFE gene are loading iron

I have a appointment on Friday, my thyroid has been checked and almost everything else. anything else they should check to rule out malignancy, inflammation or fatty liver?

P.S. I do not drink and my liver number are midly high

UPDATE:

Still feel great after plebotomy almost one week later. have done some reading and there are unkown chromosomes or mutations that may cause iron loading. Also some notice when levels are above 300 Ferritin.

I am finding that there is alot they do not know. Our bodies are very complex ( no we did not evolve from rocks)

I have seen another doctor since the last post and he reported to me 4 of his patients that have the heterozygous - 1 HFE gene are loading iron.

I have a appointment on Friday, my thyroid has been checked and almost everything else. anything else they should check to rule out malignancy, inflammation or fatty liver?

also should i fast when Iron levels are checked? Blood Test?

P.S. I do not drink and my liver number are midly high

C-Reactive Protein is the name of the blood test.  One of the members of the group is heterozygous H63D and has high ferritin levels.  She has also been diagnosed with an inflammatory disease.  As she is elderly and has fragile veins, she has had only one venesection.  She has reduced her ferritin iron levels (though not recommended) by eating low level iron foods (i.e. less meat for starters) and no fatty foods.  She has also cut out sugars and starches.  Her ferritin iron levels have reduced by 200-300 each iron studies test.  Eating a diet of reduced iron would not work for real HH, as homozygous continue to load iron as there is iron in every food (except cream, creamy cheese and whiskey! and we can't live on that).  Besides we still need iron in our diet.

Do not include vit c supplementation with your meals, nor OJ - it increases the uptake of iron.  Instead have a cup of tea, coffee, small red wine, milk, yoghurt, cheese (anything high in calcium) with your meals to reduce your uptake of iron.

Have your vit B12 and vit D checked.  If B12 low, you will find that injections work better than tablets.  If vit D is low, vit D3 drops made by a quality company like Bio-Ceuticals actually work.  I had tripled by intake of tablets to no avail but since taking the drops, the proof is in the blood tests.

The Good News Disease - better than having cancer, and venesections are better than having chemo, though we are prone to cancer as cancer thrives on iron, and so does helicobacter pylori.

Two others at the mtg were also heterozygous H63D but with high ferritin levels.  Their causes have not been investigated either.

Good luck Friday, and don't forget the liver scan (not biopsy!) and pituitary gland hormone tests.

Hello Mattyv

I am interested in your post.  I am H63D heterozygous and C282Y negative and my saturation was at 30% when first tested for haemochromatosis.

I was told that because I had only inherited one gene from one parent I was unlikely to develop the disorder.  It was decided at the time to do nothing.  Two years later my ferrtin was at 5000 and still had a low saturation level.  I was referred to a consultant in London where further tests were carried out which revealed that I had the more rare form of haemochromatosis, 'Ferroportin Disease' which is also known as haemochromatosis type 4. 

You only need one gene from one parent to develop the disorder.  There are two types of Ferroportin, type A and B.  I believe from memory that type B has the same symptoms as classic HH but type A is more mild. 

You should ask your doctor to test for Ferroportin or send you to someone who can.  You can also find out more about it on the Web.

Best wishes

Marie