Would you have the DS if you have family history of iron absorption problems?
My first-ever ferritin test came back at 800. I was tested for the genetic flaw, because, of course, my kids could be at risk. I do not have it or them- any.
As to how my ferritin got so high in the first place, I can only guess it was because of 5 yrs using Tender Iron, which tends to build ferritin. don was at 600.
We were able to spend ours down, about 100 pts per year, taking no iron. Luckily, the stored iron moved over to the "iron" and it held steady for 5 yrs. When the ferritin hit 200, we started taking iron again, but it took 2 yrs to stabilize ourselves. The iron itself began to drop while we were figuring the correct formula. Having gotten everything stable again, we hold with iron around 90, ferritin 200-300.
BUT I hemolyze. Since 2004. Been tested for every kinda thing there is, added copper, and folic, on top of my B12 like the proverbial white on rice, but I still give birth to immature RBC that die before reaching maturity.
Based on that, my doc uses the word anemic to apply to the hemolytic anemia. I'm highly offended because my other numbers are so good, but still, I make flawed cells. All the iron on earth does no good if you can't move it around to all the stations where it is needed.
Like many others, I was anemic all my life until WLS. I had a hystie in 1981, so that was not the cause. I don't actually like meat so much, so that didn't help. But after WLS, once we found an agreeable iron, the iron anemia went away. The hemolysis did not show up til 10 yrs post-op.
As to how my ferritin got so high in the first place, I can only guess it was because of 5 yrs using Tender Iron, which tends to build ferritin. don was at 600.
We were able to spend ours down, about 100 pts per year, taking no iron. Luckily, the stored iron moved over to the "iron" and it held steady for 5 yrs. When the ferritin hit 200, we started taking iron again, but it took 2 yrs to stabilize ourselves. The iron itself began to drop while we were figuring the correct formula. Having gotten everything stable again, we hold with iron around 90, ferritin 200-300.
BUT I hemolyze. Since 2004. Been tested for every kinda thing there is, added copper, and folic, on top of my B12 like the proverbial white on rice, but I still give birth to immature RBC that die before reaching maturity.
Based on that, my doc uses the word anemic to apply to the hemolytic anemia. I'm highly offended because my other numbers are so good, but still, I make flawed cells. All the iron on earth does no good if you can't move it around to all the stations where it is needed.
Like many others, I was anemic all my life until WLS. I had a hystie in 1981, so that was not the cause. I don't actually like meat so much, so that didn't help. But after WLS, once we found an agreeable iron, the iron anemia went away. The hemolysis did not show up til 10 yrs post-op.
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
I also have Thalassemia minor in which my RBC breakdown faster than the 120 days that most people do and my RBC are immature because of this.I'm seeking a revision and Dr Roslin is aware and had no problems with it.Good luck and stay on top of your labs................ ..............................Kenya
I have a different blood disorder than you do called Thrombocytopenia. I have low blood platelets and have struggled off and on all my life with anemia. Platelets are responsible for clotting. My surgeon was aware of it and I recently (approx. 7 weeks ago) got the DS.
Knowing the (other) health issues that I have, the benefits of the DS (especially in comparison to other WLS), and my long-term risks associated with whether I lost, gained, or maintained my weight...I felt it was in my best interest to still undergo the DS. Of course it is a matter of personal opinion and only the person undergoing the DS can make the decision for what may be best for them. Any person should be proactive in their healthcare, just knowing your health issues in advance should help you advocate for yourself better in the future.
Roxy
Knowing the (other) health issues that I have, the benefits of the DS (especially in comparison to other WLS), and my long-term risks associated with whether I lost, gained, or maintained my weight...I felt it was in my best interest to still undergo the DS. Of course it is a matter of personal opinion and only the person undergoing the DS can make the decision for what may be best for them. Any person should be proactive in their healthcare, just knowing your health issues in advance should help you advocate for yourself better in the future.
Roxy
Winning isn't everything, but wanting to win is.
DONT BE AFRAID TO FAIL......BE AFRAID NOT TO TRY!
highest weight 313/ surgery 255 / current 185 / goal 135 Height 5'6"
DONT BE AFRAID TO FAIL......BE AFRAID NOT TO TRY!
highest weight 313/ surgery 255 / current 185 / goal 135 Height 5'6"
Avonlea
on 8/22/11 7:23 am
on 8/22/11 7:23 am
Okay, thanks. All really useful information. I have a recommendation for a local hematologist who is sharp, and I wanted to see one anyhow because of my Factor V Leiden, so I'll add this to the list to discuss.
I am trying to get as much information as I can from the relatives, but it's tough. I'm not sure some of them know much beyond "anemia," and I'm not sure that's accurate, the more I read about this.
For me the only question is VSG vs DS, not really whether I get WLS at all. I can get either at this point -- I'm just trying to decide the best option for me. I am worried about regain with the VSG (and I refuse to have one of those ridiculously small VSG stomachs because of GERD issues), and I am worried about long-term malabsorption given my family health history with the DS. (RNY and LapBand are not options.)
I am trying to get as much information as I can from the relatives, but it's tough. I'm not sure some of them know much beyond "anemia," and I'm not sure that's accurate, the more I read about this.
For me the only question is VSG vs DS, not really whether I get WLS at all. I can get either at this point -- I'm just trying to decide the best option for me. I am worried about regain with the VSG (and I refuse to have one of those ridiculously small VSG stomachs because of GERD issues), and I am worried about long-term malabsorption given my family health history with the DS. (RNY and LapBand are not options.)
Avonlea
on 8/22/11 7:24 am
on 8/22/11 7:24 am
[Oops, I am reposting this, because I accidentally deleted this post from up above.]
Thanks, everybody. This is useful.
For more detail, I am a carrier for the heritary hemochromatosis-associated C282Y mutation. Something like 80-90% of people with heritary hemochromatosis caused by HFE mutations have two copies of the C282Y mutation (but keep in mind that tons of people have two copies of the mutation and never show signs of iron issues). I only have one copy of the mutation, which makes me a carrier but not at increased risk of developing the more commonly known variants. That having been said, there may be other mutations which act with the C282Y mutation to cause hemochromatosis.
Right now I'm trying to figure out more information about the various anemia issues my older relatives have had. I wonder if it was actually hemochromatosis, just showing up as "anemia" because they weren't testing more thoroughly. It's been a little difficult to get more accurate information than "anemia."
Thanks, everybody. This is useful.
For more detail, I am a carrier for the heritary hemochromatosis-associated C282Y mutation. Something like 80-90% of people with heritary hemochromatosis caused by HFE mutations have two copies of the C282Y mutation (but keep in mind that tons of people have two copies of the mutation and never show signs of iron issues). I only have one copy of the mutation, which makes me a carrier but not at increased risk of developing the more commonly known variants. That having been said, there may be other mutations which act with the C282Y mutation to cause hemochromatosis.
Right now I'm trying to figure out more information about the various anemia issues my older relatives have had. I wonder if it was actually hemochromatosis, just showing up as "anemia" because they weren't testing more thoroughly. It's been a little difficult to get more accurate information than "anemia."
Wow lots of comments ont this. Sorry to hear about your health issues Avonlea - hope you're better now.
Just to add a late comment to the discussion, I have dealt with herediatry hemochromatosis for 5 years. My doctor discovered because I was slightly anemic (by 1 point off of normal). When she checked my ferritin level it well over 600.
Anyway, I had a RNY in April and my ferritin levels have leveled off around 50 (which I think is low but is supposedly a good number for people with HH) and my doctors are very happy with where I at. No anemia and lots more energy. I would do it again in a heartbeat.
Just to add a late comment to the discussion, I have dealt with herediatry hemochromatosis for 5 years. My doctor discovered because I was slightly anemic (by 1 point off of normal). When she checked my ferritin level it well over 600.
Anyway, I had a RNY in April and my ferritin levels have leveled off around 50 (which I think is low but is supposedly a good number for people with HH) and my doctors are very happy with where I at. No anemia and lots more energy. I would do it again in a heartbeat.
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