Would you have the DS if you have family history of iron absorption problems?
Avonlea
on 8/21/11 3:32 pm
on 8/21/11 3:32 pm
Hi everybody,
Sorry I dropped off a few months back. I had some stuff come up in my life unrelated to surgery and had to put everything off for a few months. All of that is resolved now. But while I was waiting through all of that, some health news came up in my family. I've known for a long time that family members have struggled with anemia, but it now looks like there is also hemachromatosis that runs in the family as well. I am a genetic carrier for heritary hemachromatosis, but as far as we know, it's not manifested (and I only have one copy of the mutation, not two, which is important). In my family, the iron issues start to manifest around age 50 or 60, which is important for me because I'm now in my 30s.
Basically, in the past few months I've learned quite a bit about iron absorption disorders in my family. I don't really have much guidance from studies, etc., as to how this will play out with the DS. Do any of you have any thoughts?
Sorry I dropped off a few months back. I had some stuff come up in my life unrelated to surgery and had to put everything off for a few months. All of that is resolved now. But while I was waiting through all of that, some health news came up in my family. I've known for a long time that family members have struggled with anemia, but it now looks like there is also hemachromatosis that runs in the family as well. I am a genetic carrier for heritary hemachromatosis, but as far as we know, it's not manifested (and I only have one copy of the mutation, not two, which is important). In my family, the iron issues start to manifest around age 50 or 60, which is important for me because I'm now in my 30s.
Basically, in the past few months I've learned quite a bit about iron absorption disorders in my family. I don't really have much guidance from studies, etc., as to how this will play out with the DS. Do any of you have any thoughts?
Ms. Cal Culator could chime in on this. She has some kind of inherited problem along these lines. She gets infusions x number of times per year and does okay with it. I believe that was the case before her DS as well.
If you don't absorb iron through your gut, infusions are easy enough to get, well, assuming you don't wind up with no insurance, I suppose. They are something that can be had for cash with some docs, though.
If you don't absorb iron through your gut, infusions are easy enough to get, well, assuming you don't wind up with no insurance, I suppose. They are something that can be had for cash with some docs, though.
I'd want to know what KIND of iron problems you might develop, and whether they could be fixed with infusions.
Infusions are terrific. You get tanked up, and you don't have to buy, set out, take or suffer gastrointestinal effects of iron pills for many months at a time (I went 18 months between infusions last time, and I got my ferritin so much higher this time I'm hoping to not see the hematologist for 24 months or more next time). I love my infusions! I just wish I didn't have to drive 35 miles each way to get them.
Infusions are terrific. You get tanked up, and you don't have to buy, set out, take or suffer gastrointestinal effects of iron pills for many months at a time (I went 18 months between infusions last time, and I got my ferritin so much higher this time I'm hoping to not see the hematologist for 24 months or more next time). I love my infusions! I just wish I didn't have to drive 35 miles each way to get them.
Fo' Shizzle My Sizzle
on 8/21/11 4:03 pm
on 8/21/11 4:03 pm
Hmmm, my mom and I both anemic- however my iron deficiency resolved itself when I went on birth control pills. I had menhorragia and dysmenhorria that I think were the culprits (yay PCOS... not), but still keep an eye on it and went ahead with the DS expecting my iron to drop since I had issues with it pre-op. Luckily it hasn't so far, but I've got iron suppliments on hand in case it does.
Sadly I don't have any experience or knowlege of hemachromatosis when it comes to anemia. I hope there are other DSers on here who may be able to advise about that.
Sadly I don't have any experience or knowlege of hemachromatosis when it comes to anemia. I hope there are other DSers on here who may be able to advise about that.
I've always been anemic. My grandmother had problems with her iron and my hemotologist says it's hereditary. I just forget the name of it at the moment.
I get iron infusions at least twice a year. I'm doing well and my iron stores are slowly going up, it's been three years. I recently had surgery and had to have a transfusion because my iron was so low, I lost a lot of blood. It really helped me in the long run.
Anemia shouldn't stop you from doing anything but giving blood to the Red Cross.
Dana
I get iron infusions at least twice a year. I'm doing well and my iron stores are slowly going up, it's been three years. I recently had surgery and had to have a transfusion because my iron was so low, I lost a lot of blood. It really helped me in the long run.
Anemia shouldn't stop you from doing anything but giving blood to the Red Cross.
Dana
Hemachromatosis and you are a carrier hmmm..... . I am not a genetic carrier but my father and brother both have it. My father has since died from something unrelated but I know that my brother has to have a phlebotomy every few months. My Dad's manifested around age 50, my brother around 30. If one is female, having menstruation is to one's advantage until menopause.
The ironic thing about Hemachromatosis is that one can have it AND be anemic at the same time. Yes, there is iron over load, but in all the wrong places.
Ask a GOOD hematologist that specializes in hemachromatosis and ask about how it affects those with vitamin absorption issues. I have no medical expertise on the subject but it seems to me that malabsorbtion might be a good thing if it ever manifests or has little effect on it either way.
If you just get low iron, there are always infusions. I have always had low iron but never did anything about it until after surgery. For me, getting an infusion was no big deal and it was made my life so much better.
The ironic thing about Hemachromatosis is that one can have it AND be anemic at the same time. Yes, there is iron over load, but in all the wrong places.
Ask a GOOD hematologist that specializes in hemachromatosis and ask about how it affects those with vitamin absorption issues. I have no medical expertise on the subject but it seems to me that malabsorbtion might be a good thing if it ever manifests or has little effect on it either way.
If you just get low iron, there are always infusions. I have always had low iron but never did anything about it until after surgery. For me, getting an infusion was no big deal and it was made my life so much better.
Ms. Cal Culator
on 8/22/11 3:11 am - Tuvalu
on 8/22/11 3:11 am - Tuvalu
Mine is very mild Thalessemia.
And my hematologist is anti-wls for everyone. So I wouldn't go by his opinion on wls.
Pre-op, I'd alway been "borderline anemic." Never allowed to donate blood...that kind of thing. But never treated. It got worse with the band because I could eat far less red meat. It got a little better after the DS...steak-happy me.
But my ferritin--my iron STORES--are for **** and so I got a couple of rounds of infusions and my hematologist should call today to tell me the results of my last blood test. My bet is that I don't need another one right now. It's been over a year.
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