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.

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Confused re: treatment

deleted_user
deleted_user
I have recently been diagnosed with homog. H63D mutation hemochromatosis. I started with my regular MD in Sept with high iron (160) and a low ferritin of 6. He rechecked levels and my iron was 55, %iron sat 14 and ferritn 7. He put me on iron supplement x 2 mos and I had blood rechecked. Fe was 189, %sat 66, and ferritin 11. MD told me my anemia was cured, but my Fe was high so stop taking the FE and get rechecked in 2 mos. Well, I decided to go to a hematologist who could not explain the high iron and sats and low ferritin and checked me for a # of things including hemochromotosis. My Fe came back132, sat at 48% and transferrin 196 and Ferritin 18; as well as the positive DNA tests. She said I needed to get my sats down and to start phelbotomy..they took 1 pt and I have to go back next week for another and then blood work one month. I'm so confused.....everything I'm reading says with my ferritin so low, I could be fe deficient or iron avid. I'm thinking I shouldn't be getting more blood taking. Any ideas? Should I get a second opinion before I let them keep taking blood???? HELP Please.
GidgetD
GidgetD
I guess I would be confused also if I were you. Your ferritin is quit low, I guess I would listen to your DR and get one more phleb. It also would not hurt to get a second opinion, but I don't think getting a phleb will do you any harm but that is just my opinion.
Strype
Strype
Have you had any blood transfusions?
deleted_user
deleted_user
I have not had any transfusions. I actually did go back to have the second pint removal, but also got a name of a hematologist from a friend who works at a major university health center in PGH. I have an appointment tomorrow so we'll see how it goes. Thanks for the input.
GidgetD
GidgetD
Please let us know what your new hemotologist says, I am very curious.
Strype
Strype
Wait a minute I am completely lost...

Normal Values (I think)

Iron Saturation = 15-55%

Serum Iron = 60-165 Adult Female

Ferritin = 20 to 120 Adult Female

TIBC = 300-450 Adult Female

Transferrin = 200-400 Adult Female

So your Ferritin is perfect. Your iron is normal, right? Everything else seems normal...

What's the issue? I'm a bit scatter brained so maybe I'm missing something. My iron sat is 95%, my ferritin was 3200.

Just because you are homozygous for the gene doesn't mean you have it.
Strype
Strype
Okay I think I might see the point... But it still looks like nothing to me.


You might eat a lot of red meat? Cook from an iron pan? Take a multivitamin?
deleted_user
deleted_user
I don't eat much, if any red meat; was taking a multivitamin without iron; and do not cook with an iron pan (to answer those questions). I went to the hematologist in Pgh (at the UPMC Cancer Center); there were very good and felt that I did not need phlebotomies at this time. THey felt my blood work warranted monitoring, but no treatment at this time; I'm to go back to see them in 3 months, but they also referred me to another hematologist who specializes in hemachromotosis who I see on Wed. They feel that because I have not gone through menopause yet, I may be controlling my Fe levels through monthly periods (I have heavy ones) and I actually have a very low Fe intake. I have hypercoagulability issues and my sister has a diagnosis of porphyria which I may need to be tested for; so I have lots of weird blood issues; the reason they feel I warrant monitoring (but no more blood letting at this time!!..yeah)...will keep you posted. THanks
deleted_user
deleted_user
Gosh it seems pretty evident that your body is doing its job ridding iron with your monthly periods. I imagine you will start loading iron when those stop. (This is what happened to me). I was never totally anemic, but lost so much blood each month that I was weak for a few days afterwards. What time of the month (related to your cycle) were the tests done?
deleted_user
deleted_user
I've never heard of anyone who was homozygous for h63d developing HH, I'd imagine it's rare, very rare.
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