Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I was diagnosed with HH about a month ago and have had one phlebotomy.
My hemotologist hasn't mentioned any follow up testing and assume we'll talk about that in July after I've had several months of phelbotomies (1x every 2 weeks).
My GP who is a 'naturopathic' doctor has said that she doesn't think it's worth it to test my organs (like a liver ultrasound or EKG) now until I'm done with the first few months of phelbotomies and see how I feel then before deciding if I need to have those follow up tests done.
Taking my age and my iron levels into account, they seem to have the opinion that the 'penetration' rate is lower than others and therefore I won't have any long term organ damage.
My ferritin levels have bounced over the past year between 324 and just above 400.
My liver enzymes are all normal though which leads her to believe my liver is probably fine.
Perhaps I'm just paranoid (aka, concerned about my well being) but can anyone validate either my doctor's opinion or my concern?
thanks!
My hemotologist hasn't mentioned any follow up testing and assume we'll talk about that in July after I've had several months of phelbotomies (1x every 2 weeks).
My GP who is a 'naturopathic' doctor has said that she doesn't think it's worth it to test my organs (like a liver ultrasound or EKG) now until I'm done with the first few months of phelbotomies and see how I feel then before deciding if I need to have those follow up tests done.
Taking my age and my iron levels into account, they seem to have the opinion that the 'penetration' rate is lower than others and therefore I won't have any long term organ damage.
My ferritin levels have bounced over the past year between 324 and just above 400.
My liver enzymes are all normal though which leads her to believe my liver is probably fine.
Perhaps I'm just paranoid (aka, concerned about my well being) but can anyone validate either my doctor's opinion or my concern?
thanks!
do it every six month this is a measure if you have any issues with ur liver
according ur ferttien level you need to reduce them again below 100 is fine
i have no organ damage as my test show my i have a high liver enzymes not all of them two of them and that was due to my fatty liver and it will be normal again when i lose wight which i tried and it helps alot
i dont know how its measured according age but i think u have to reduce it but u r in the normal range
and believe me the protean test can reveal if any thing is wrong with liver such as cancer hepatitis or any defection
u seem to be normal and doing fine , work on ur ferttien levels all the luck my friend
My ferritin started at 929 and I received no ultrasound or liver biopsy. If your ferritin hasn't went over 1000, then these other tests are not warranted as you only have a 1% change of having damage at levels under 1000.
My liver enzymes were fine too by the way.
If you have insurance coverage, it might be nice to get a BASELINE scan.
zzzzz
She's advising that I wait until the initial phase of phlebs is done to get our 'baseline'. She might be right.
But I know I'd feel better with a couple diagnostics just for reference.