Thalassemia Trait B v. Iron Deficiency Anemia

[november_ludgate]

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!

 

[DianaCox]

I think there is someone here who might have more info for you, and have emailed her. In the meantime, I'm just curious - how long were you diabetic and on insulin before your DS? I was looking at your siggie ...

 

[november_ludgate]

Thanks, Diana. I was diabetic for 18 years prior to the DS. I was on an insulin pump for the year prior to the DS, on multiple daily injections for about a year prior to that, and having various levels of control with every oral medication known to man prior to that. Was on small amounts of insulin as long as 10 years ago, but then off of it again with the advent of Byetta, then back on when I couldn't tolerate Metformin anymore, then back off when Januvia + Metformin worked better, then back on when that quit working, then back off when I tried Victoza, etc.

I am cautiously optimistic that I'll continue to see improvements--obviously, I'd love for it to go away completely, but there's no way to know what will happen at this point.

The good news is, I went from 500+ units of insulin a day (via pump) to 24 units a day, plus some metformin. My eyes are stable and my first post-op A1C was 6.2 (down from 6.8 prior). I go for another one next week, but I expect good news since my fasting blood sugars are always in the 80's. If this is the best I get, then so be it--it still bought me years of my life, it's helping me to keep my vision, and it's given me hope that I'll be able to have kids in a year or two. But I sure would love to kick all of this completely. My docs are all still hopeful, too, since everything's moving in the right direction.

 

[november_ludgate]

I guess I should add--my c-peptide was still in the normal range, though low (not sure if you're familiar with that particular metric, but it has to do with remaining pancreas function). That gives some hope that reducing the weight will lower my insulin resistance enough to allow my pancreas to do its thing without the aid of medications. I'd be thrilled to be back to just oral meds. But as I said, we'll see what happens.

 

[Spiky Bugger]

I'm the one. Sicilian side of the family. Just tested for new doc. I am a VERY mild case. Always on the cusp of anemia, but never ACTUAL anemia...until two things kicked in...old age and the DS. I malabsorb just enough iron to make me officially anemic now.

So, maybe twice a year, I go to the Hemo doc and get a series of four to six iron infusions at the chemo center. That fixes me up, temporarily. And I am less tired and demand fewer ribeye steaks, usually.

Sue

And, hi!

Oh...and both of my hematologists (I moved) told me to stop wasting money on oral iron supplements.

 

[Spiky Bugger]

And...with those infusions, my bloodwork is probably closer to normal that it ever was.

For a decade or two, I assumed that I had inherited Thalassemia Minor. (I have been tested now and I have a mild case.). I'm 67 years old and on that side of my family (and Sicily, because it was an island with more intermarriage, had a higher rate of this than the mainland) my grandparents lost two children in infancy. All we were ever told, because that's all they ever knew, was "bad blood." There were other stories of other ancestors who had "bad blood."

I gave up trying to donate blood because I was always asked if I had recently had surgery...was given a cookie and o.j. and sent away. What is really weird is that four of my cousins are nurses and I was the one who told THEM that we were candidates for this problem. Three of them had been refused as blood donors and they all considered themselves "borderline" anemics.

 

[november_ludgate]

And...with those infusions, my bloodwork is probably closer to normal that it ever was.

For a decade or two, I assumed that I had inherited Thalassemia Minor. (I have been tested now and I have a mild case.). I'm 67 years old and on that side of my family (and Sicily, because it was an island with more intermarriage, had a higher rate of this than the mainland) my grandparents lost two children in infancy. All we were ever told, because that's all they ever knew, was "bad blood." There were other stories of other ancestors who had "bad blood."

I gave up trying to donate blood because I was always asked if I had recently had surgery...was given a cookie and o.j. and sent away. What is really weird is that four of my cousins are nurses and I was the one who told THEM that we were candidates for this problem. Three of them had been refused as blood donors and they all considered themselves "borderline" anemics.

Thanks for the information, Spiky!

Once upon a time, I had the world's worst case of mono that had the medical folks briefly convinced I had some kind of lymphoma. No joke. I saw a hematologist then, but they attributed my mild anemia to the sickness I'd been through (severe mono and mono-induced hepatitis). A few years later, my endocrinologist was suspicious of my persistent almost-anemic state and ran the tests to confirm Thalassemia Beta Minor. Told me to stop taking the iron supplements my PCP had suggested, and I went on with my life. Now I'm just trying to sort out what to do with my iron supplementation post-DS. I've switched to Vitalady's tender iron + vitamin C, as I said, so I think I'll wait until my next labs and see how my numbers do. My PCP is willing to refer to a hematologist, but I'm not sure it's necessary at this point.

My mom's always been borderline anemic, and has required iron infusions post-DS, so we think (without the testing) that she's probably has it as well. No Italian (or really any Mediterranean) known in my genetic makeup, but I married an into an Italian family. Knowing that we plan to have kids, we had him tested, and he's luckily not a carrier. Go figure! At least it shouldn't cause any issues.

Anyway, I appreciate your quick response! Helps to know I'm not the only one.