november_ludgate
Member
Hi Everyone,
Does anyone have experience with being a carrier for thalassemia beta trait and how that affects our labs/vitamin regimen?
It seems like this is not a super-common disorder to be a carrier for, AND most people don't know when they have it (doesn't always cause symptoms). I understand that it's a problem with the makeup of red blood cells, and in the form that I carry will cause iron labs to present as iron-deficient anemia, when that's not necessarily the case. To be clear, I have thalassemia beta minor, or am a carrier for thalassemia trait b. I do not have the actual disorder, just a mild version of it.
At 6 months post-op, my iron saturation is 10.3. This is not, in and of itself, unusual for me. In the 15-ish years since I've been having labs drawn, I've never seen an iron saturation far above 12%. In early September, my iron saturation was 10.0, they suggested I supplement prior to surgery and it was up to 12.2 in November, but now it's back down to the 10.3.
I follow Vitalady's schedule, which means for iron I'm taking Vitalady's Tender Iron 300mg and Kirkland Vitamin C 1000 mg in the morning, away from calcium and caffeine. It did take some time post-op to work up to that--I didn't tolerate the chewable tender iron from vitalady well at all, and I did take two iron pills labeled "nature made iron 65 mg, equivalent to 325 mg ferrous sulfate" because I had it on hand and that was easy to take and didn't cause any problems (and I thought it'd be better than nothing). Now that that's gone, I've been on the vitalady blue capsules for the last month and a half.
I'm having a very hard time finding information related to thalassemia and the DS, so I thought I'd throw it out here. I don't know whether to increase my iron or not, because I don't fully understand the relationship between the thalassemia trait and our malabsorption. My surgeon's office refers me to a dietician who has nothing but ridiculous advice for me (no need to get started on that now, but trust me, it's bad). She does not know about the thalassemia but doesn't care to research it either. My PCP is new to the DS, but is working with me and is trying to find out what she can about this issue. She may send me to a hematologist, which is okay, I suppose, but seems a bit drastic for what is essentially the same iron levels I had pre-op. Maybe I'm wrong about that though,
I threw this out on a facebook thread for input, and it was suggested I bring my question here. If anyone has any help that they can offer, I would greatly appreciate it! Thanks!
Does anyone have experience with being a carrier for thalassemia beta trait and how that affects our labs/vitamin regimen?
It seems like this is not a super-common disorder to be a carrier for, AND most people don't know when they have it (doesn't always cause symptoms). I understand that it's a problem with the makeup of red blood cells, and in the form that I carry will cause iron labs to present as iron-deficient anemia, when that's not necessarily the case. To be clear, I have thalassemia beta minor, or am a carrier for thalassemia trait b. I do not have the actual disorder, just a mild version of it.
At 6 months post-op, my iron saturation is 10.3. This is not, in and of itself, unusual for me. In the 15-ish years since I've been having labs drawn, I've never seen an iron saturation far above 12%. In early September, my iron saturation was 10.0, they suggested I supplement prior to surgery and it was up to 12.2 in November, but now it's back down to the 10.3.
I follow Vitalady's schedule, which means for iron I'm taking Vitalady's Tender Iron 300mg and Kirkland Vitamin C 1000 mg in the morning, away from calcium and caffeine. It did take some time post-op to work up to that--I didn't tolerate the chewable tender iron from vitalady well at all, and I did take two iron pills labeled "nature made iron 65 mg, equivalent to 325 mg ferrous sulfate" because I had it on hand and that was easy to take and didn't cause any problems (and I thought it'd be better than nothing). Now that that's gone, I've been on the vitalady blue capsules for the last month and a half.
I'm having a very hard time finding information related to thalassemia and the DS, so I thought I'd throw it out here. I don't know whether to increase my iron or not, because I don't fully understand the relationship between the thalassemia trait and our malabsorption. My surgeon's office refers me to a dietician who has nothing but ridiculous advice for me (no need to get started on that now, but trust me, it's bad). She does not know about the thalassemia but doesn't care to research it either. My PCP is new to the DS, but is working with me and is trying to find out what she can about this issue. She may send me to a hematologist, which is okay, I suppose, but seems a bit drastic for what is essentially the same iron levels I had pre-op. Maybe I'm wrong about that though,
I threw this out on a facebook thread for input, and it was suggested I bring my question here. If anyone has any help that they can offer, I would greatly appreciate it! Thanks!