Anyone know about hemochromatosis?

[Tandem mama]

Mil just got dx and it is genetic. She found that it is more prevalent in those of Celtic descent-which she is. Both sides of my family have celtic heritage. And some of the issues it seems to cause (tons of heart issues and Alzheimer's) so i am getting tested as well.

I'm calling our dr today to get us in for testing-all three kids as well as myself. I have to figure out how to get dh tested-he isn't currently insured because our state hasn't put Medicaid expansion in place yet.

I'm just starting to research it, but if anyone has any info or links I'd appreciate it. My brain power is being used up with a newborn, a kid with diarrhea, and a kid with SPD.

[TestifyToLove]

We did therapeutic phlebotomy at my infusion center to deal with this condition. Basically, we would remove 500mL of blood at intervals dependent upon how fast the person would build their levels back up again.

[justbreathe]

My FIL has it. :yes Unfortunately, his body suffered tremendous amounts of damage before anyone caught it. Once he was dx, he realized that most of his family members had died from complications from it, but no one ever knew what was going on.

*generally* women don't suffer as much damage from it b/c of the blood they lose from regular periods but I have to worry about lack of menstruation during pregnancy and breastfeeding. There is a family history of my side as well and I'm afraid that some of the health problems that my mother has are because of it but she refuses to believe that it could be linked. :doh

My MIL has spent hours and hours researching hemochromatosis - I'll ask her if she knows of any good links.

[melliethepooh]

The main thing I know about it is that people with it are more resistant to the plague, or that's how the theory goes, kind of the way people with sickle cell anemia are resistant to malaria. Not helpful :shifty but interesting.

[Tandem mama]

My FIL has it. :yes Unfortunately, his body suffered tremendous amounts of damage before anyone caught it. Once he was dx, he realized that most of his family members had died from complications from it, but no one ever knew what was going on.

*generally* women don't suffer as much damage from it b/c of the blood they lose from regular periods but I have to worry about lack of menstruation during pregnancy and breastfeeding. There is a family history of my side as well and I'm afraid that some of the health problems that my mother has are because of it but she refuses to believe that it could be linked. :doh

My MIL has spent hours and hours researching hemochromatosis - I'll ask her if she knows of any good links.

My iron was surprisingly high for pregnancy, but not outside of normal, last it was checked. :think

I'm calling MIL's hemotologist tomorrow to see if we should get tested by him or if we need to see our primary dr. for testing/referral. Also if he takes our Medicaid.

[justbreathe]

AFAIK, you only need to get your ferritin levels checked through basic bloodwork to determine if it's a problem for you.

[TestifyToLove]

Hematocrit and Hemoglobin are the basic tests you need to have run. They can also check ferrin levels but once they know it exists, they just monitor H&H typically. When we do phlebotomy, we run an H&H within 24 hours of drawing off the blood and when we hit the volume we're taking off we run another H&H is all. Most of our patients had 500mL removed but sometimes it was a smaller amount. Most of the patients had been having it done for years and years. One guy told me he had been getting it four times per year for thirty years.

[joyousTXmama]

DH is a carrier; it affects him, though far less seriously than someone like your mil with the full disorder. My DH needs to be tested and to have therapeutic phlebotomy when his iron is too high. He avoids iron fortified foods now, and his levels have been much better; he has not needed therapeutic phlebotomy since watching his diet. Iron fortified cereal is especially something to watch out for.
I will have both our sons screened for the disease when they are older. I am not a carrier, so they have a 50% chance to be carriers, from DH. I think it's good for you to be tested, the kids too' and your DH when he can - he is certainly a carrier, but you want to know if he actually has the disorder (if your fil is an unknown carrier, he could). It can be serious or deadly in the homozygous (two genes for it) form if it goes untreated for a long time, but the treatment is simple phlebotomy.

[Soliloquy]

My FIL has it, as does my mom's boyfriend. For both of them it was discovered very late in life. My FIL was in his 70s, my mom's boyfriend was in his 60s, IIRC.

My FIL is doing just fine. For awhile he had to have blood removed, less than year, IIRC, then he didn't anymore.

My mom's boyfriend became very, very ill and almost died. He had to have blood removed for a few years then, like my FIL, his levels went down on their own. He watches what he eats and avoids iron-rich foods.

Interestingly, my FIL has too much iron while my DH has chronic anemia . . . a happy medium for both would be awfully nice.

[Tandem mama]

MIL's hand swelled really badly and they thought it was gout but her/dh's oncologist/hematologist realized it was this. Mil said the sooner we get tested the better because I guess the damage is done over time. This way, we can have our iron regularly checked-if we know we have the genes.

With a Celtic ancestry on both sides of my family I could be a carrier and our kids could likely have it.

[Soliloquy]

Iron overload does do a lot of damage over time. :yes

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