Hereditary HEMOCHROMATOSIS HFE related

Hi Mary,

The genetic test can tell you whether or not you have the genes that put you at risk for loading iron in your body. Not everyone who has the genes end up with iron overload so there are other tests that can tell you if this is the case.

Serum ferritin - this will be raised if you are loading iron, but it can be raised in other conditions too.

Transferrin saturation - if this one is raised you are definitely loading iron in your organs and will need treatment.

The treatment is venesection (removing blood like when you are a blood donor) to bring the ferritin and transferrin sat down.

If you are loading iron, you will feel tired and may have many other symptoms including joint aches, low mood, bronzing of skin. Also need to be screened for diabetes and maybe other things like vitamin D deficiency and hypothyroidism as these can be linked.

If you get treatment, many of these symptoms will resolve but some may not go completely (e.g. Joint aches) but hopefully will be much more manageable. The good news is - now that you know you can either be monitored or treated (depending on your iron levels) and hopefully this will stop you from getting the more serious complications.

I hope this helps

Oh, and your family should ideally be screened too.

Yes mam, those symptoms will go away after phlebotomy's.they will get your ferritin down. You will get used to the whole needle thing real quick. Honestly, just relax and know that you will soon feel better and not tired. They will be aggressive with phlebotomy's at first and then hopefully only a couple times a year. Just stay on top of labs and be your own advocate. A lot of doctors have different ideas as far as what blood work they look at. I also was overbled and became iron avid. Be your own advocate!!

Hi Mary...

Yeah, don't worry about the treatment at all. I've been going weekly for a year now, and my ferritin level is finally nearing 50. In an odd way, I've enjoyed going every week. Nurses are great..you meet others with Haemochromatosis and have a good old chat...the needle is fine...just tell yourself it's there to help you....all will be well. It's just great to have been caught in time. I had bad pains in my hand...but those pains are now virtually gone.

Good luck...keep in touch.

Mike

Thank you all so much for talking to me I am scared as I also have hypothyroidism and am taking medication plus a lot of the symptoms I just thought my body was weird!! It would be great to feel better and more 'normal' what ever that is?

Thank you again hugs have made appointment to see GP can't get it till next week though!!

It is very tiring and I too feel lightheaded and exhausted sometimes but the only way to reduce the ferritin level is by blood donation.    In my case, every two weeks.   I haave been giving blood now for about 16 months and in the past month, I have had difficulty in giving the full pint.   And, perhaps someone can tell me how long it takes to replenish blood donated and any ongoing problems.    Even after blood donation, I am still tired.   Glyn