does anyone know what Hereditary Hemochromatosis (HFE‑Related) Ive got two copies of genetic variant found so i have an increased risk

[Pascha1]

Hereditary Hemochromatosis (HFE‑Related) genetic test result two copies of genetic variant found, so i have an increased risk of getting it what ever it may be ! what is Hemochromatosis as know my dad had blood problems but not sure what they were , he's passed away so I cant ask him what it was ? So does anyone know what it means please as curious and what do i have to look out for, seems my parents past down some bad genes to me

[Clutter]

Pasha1,

Haemachromatosis is iron overload. If iron level is too high it can damage the body and joints. Regular blood donation is the usual treatment to reduce the iron in the blood.

[Pascha1 in reply to Clutter]

not that good on Vitamins but B12 was low range in bloods took B12 vitamins for a couple of weeks and when had private bloods and my B12 shot through the roof well over range. is that iron ?

Funny you should say give blood and Barrister says not allowed to give blood , or did you mean just have blood taken out rather than donate ?

[Clutter in reply to Pascha1]

Pashcha1,

No, iron is iron and ferritin. If there's a reason why the blood can't be donated it will just be drawn and disposed of.

[Pascha1 in reply to Clutter]

my ferritin was quite low i think so looks like nothing to worry about

[Barrister]

My best friend has haemochomatosis. For a child to actually have it, both parents have to be carriers. When she was finally diagnosed, her ferritin levels were very high and she had to have a unit of blood removed every couple of weeks. Now it’s less but her blood couldn’t be donated because the levels were too high. The levels have to be brought down as if the levels of iron in the brain are too high, it can cause madness.

Clemmie

[Pascha1 in reply to Barrister]

maybe i would find out if i offered to give blood as i have 2 variant genes , but not sure where both came from mum or dad or both, they have passed away so guess i will never know and not that clued up on genetics either cLutter says to donate you saying not allowed so guessing different types of it

[Clutter in reply to Pascha1]

Pascha1,

If you've no symptoms of iron overload it is unlikely you have it.

[Pascha1 in reply to Clutter]

I will have to look research it as not sure what they are, but sure if i had a problem it would of come up on my bloods, it only said I was more like to get it. not that i had it

plus used to be anaemic so doesn't sound at all like i would have it

[Barrister in reply to Pascha1]

Ask your GP to check your ferritin levels. Just a simple blood test. My son has just been diagnosed with high iron levels and is having genetic testing.

Clemmie

[Pascha1 in reply to Barrister]

mine were on the low end of range so dont think i have it thank you

[radd]

Pasha1,

I have Haemochromotosis (iron overload) which is a genetic condition where my body can not get rid of excess iron. The two easy identifiers are high ferritin and high transferrin saturation.

The term haemochromatosis encompasses at least four types of genetic iron overload conditions, most of them recently distinguished from one another as a result of the identification of a series of genes related to iron metabolism.

I have monthly pints of blood drawn off whenever ferritin goes over-range but am not a quick accumulator so once required levels are achieved, they appear to last for several months. My Hemo likes ferritin about 50 & transferrin saturation under 50%.

Giving blood is a pain as not only depletes iron but all vitamins/minerals/hormones as well. Luckily Hemo tests me for everything every 3 months, so I know my nutrient supplementation is working well ... 😜. My hospital (Brighton) disposes of blood as I medicate thyroid hormone.

Your ferritin levels will need to raise significantly in combination with the dodgy genetic mix, for blood to be drawn.

[gabkad in reply to radd]

Here in Canada, taking thyroid hormone does not disqualify blood donors. I just gave blood a couple of weeks ago. There's a whole list of drugs that are okay for blood donors.

My endo has been hopping up and down for three years now asking me if it's possible I have hemochromatosis. I have a requisition right now for transferrin and iron saturation. sigh. My hemoglobin is always super high and has always been high. Fluctuates between 147 and 162. I think it partly depends on degree of hydration, since it's always on the higher end first thing in the morning. I donated in the afternoon and it was 151. My ferritin is high in range. That I know.

Last night I sent away for a hemochromatosis genetic test because I just want to get this solved 100%.

Next blood donation is booked already for early May.

I'm procrastinating on getting the blood testing done until after I get the genetic test results.

[Clarrisa]

I have read it is best to avoid iron cookware, & heavily iron fortified foods. Also take care to buy vitamins that do contain iron in them & review list(s) of high iron foods (like on lists passed out to community donors at blood centers to bump up their iron levels) & avoid them when possible. There are dedicated cookbooks available for high iron problems. Societies for high iron conditions provide a wealth of information too.

[Gambit62]

This seems to be a good site in terms of explaining the implications of various genetic variants

ghr.nlm.nih.gov/condition/h...

may help you get a better feel for risks etc

[Pascha1]

Thank you all very much for all the info on it all , its been interesting reading it all, and by reading and hearing what some of you are are having to go through with it all I really do not think I have it, but been a good bit of learning on the whole thing. Thank you