Ferritin
Posted , 3 users are following.
Morning everyone.
I was diagnosed 2 yrs ago with haemachromatosis. Had venesections for a while. Also scans showed fatty liver & polyps on my gall bladder.
I havent had a venesection now for a year & they can't understand why my ferritin is now low. I now have to have furthur investigations as they think I may be bleeding from somewhere.
Obviously I am worrying all over again.
Has anyone else had this?
Many thanks in advance .
0 likes, 6 replies
sheryl37154 samantha27302
Posted
Fatty liver generally raises ferritin level. I don't know anything about polyps on gall bladder but mostly likely causing inflammation which also increases ferritin level. What are your HFE genes - they will have a bearing on how much you load iron as well?
It is good that they are investigating any blood loss from elsewhere. Just hang in there. Good luck.
samantha27302 sheryl37154
Posted
Hi Sheryl.
Thanks for your reply.
My HFE genes are:
Position 282Y,
63HH wild type normal.
( Not sure what all this means to be honest)
Many thanks
Sam
sheryl37154 samantha27302
Posted
It could be that you are compound heterozygous C282Y/H63D OR you are just heterozygous C282Y, and the position on the dna ladder for H63D is normal (wild type usually means normal or absent). Bit confusing the way they have written it.
If you are the first combination, then it is likely that it has mild loading capability.
If you are only heterozygous, then you would not normally be loading iron because of genetics, but because of inflammation. If your Hb is low, then you are most likely bleeding from somewhere. It does not have to be a big bleed. BTW, are you still menstruating? If you are, it is taking care of your ferritin level.
samantha27302 sheryl37154
Posted
Hi there.
No I dont menstruate anymore. Had to have an hysterectomy at 34 x
sheryl37154 samantha27302
Posted
Me also (38), and that was when iron loading took over my life.
I am hoping someone else will step in here (McTagga??) as the more I read on your genetic results, I am thinking you are only heterozygous C282Y. They tested you for H63D but found it normal, i.e. non-mutated.
Maybe you can get a formal 2nd opinion on the interpretation of your result. If you are heterozygous then you don't need to worry about having haemochromatosis, and any high ferritin level is caused by inflammation somewhere. Perhaps contact your country's Haemochromatosis Organisation.
Chelle69 samantha27302
Posted
Hi Samantha27302,
I was reading your post and thought how similar it was to my own situation. I am homozygous C282Y
genetic heamachromotosis and was diagnosed 3 years ago. I only had to have 7 venesections at the beginning and after that my ferritin dropped rapidly and has been constantly low, so low that one GP at the practice prescribed iron tablets! Needless to say I never took the tablets and I am in what they call 'maintenance' phase. I haven't needed to have any venesections for 2 years now as my ferritin doesn't seem to go above 29 anymore?!
I had a US scan done last year after having stomach and reflux problems. They found a polyp on my gallbladder (like yourself) and also hemangioma & cyst on my liver for which I am being monitored every 12 months for growth/changes. Not sure if you are C282Y x2 but it seemed similar to my own situation.
I hope you get some answers soon.
Best wishes