Hemochromatosis carrier, what does this mean?

Hi Jenifer,

My son is a carrier, he just found out. He told me he must be tested for changes every six months and his son, once he hits puberty . Men are different because they don't naturally lose blood as we do while having periods so are predominently worse. That could mean you just have to be monitered. I would phone the clinic where your appointment is and ask to be caled if there is a cancellation ... it could speed up your wait. But December is quick, my sister has been waiting three months for her first appointment and like me she has the full thing 😔😕 I wouldn't speculate it will drive you bonkers. I wish you well and hope it is made clear to you soon . Someone here may know more, they have been a great help to me this past three months.

You don’t have traditional type one haemochromatosis as you only have one gene likely inherited from just one parent.This makes you heterozygous and less likely to load iron excessively.By comparison,I am homozygous, I have two C282Y genes,the most common type,one inherited from each parent.My ferritin was 1458 and TS 90% and is now similar to yours after a year of fortnightly venesections/phlebotomies.Many carriers do not require this type of treatment.

Hi Jennifer

I have HH with homoygous C282Y genes (inherited from both parents) and my kids are carriers only having one gene.  My daughter has had the same symptoms as you and recently had her ferritin tested which was at 479.  She was referred to a hematologist.  He suggested she donate blood every eight weeks and see him in eight months.  It's my understanding that there is no harm in donating blood and is good for your body.I also believe that you can't have HH with only one gene.  In my daughters case there was a considerable rise in her ferritin over the last year and her symptoms persist.  She hasn't gone to give her blood as yet so we will see if her symptoms persist.  Good luck. 

This question comes up time and time again.  I belong to a Haemochromatosis association which works closely with HH medical researchers, and they say that you cannot have haemochromatosis with only one gene (generally referred to as a carrier).

Having said this there is such a condition as ferroportin disease which is deemed so rare that they do not test for this.  But I think you will be in a worse condition if you had this.  

To answer your question, search for real medical research on this question.  You do not mention your HFE gene that you have inherited nor your ferritin level.  There are other reasons that cause high ferritin levels, the most common being fatty liver, infection, inflammation, malignancy.  Drs seem to be pouncing on haemochromatosis as a cause because it is easier for them, rather than conduct a search for the real diagnosis.

Fatty liver is very common as a high consumption of sugars and starches, and alcohol, can cause this.  Try eliminating all (well, most) sugars and starchy foods from your diet.  It also won't hurt you to donate blood at least every three months and you will be doing something good for other people.

And tell your dr to keep looking, if symptoms persist.