Source
r/thalassemia•
EnvironmentalImage9

Is this a thalassemia thing?

I have beta thalassemia minor and so does my mom. We both experience basically being "poisoned" by iron-rich foods. We're not on iron supplements because our doctors said it would be dangerous for us to take them so we both take folic acid. When we have "too much" iron we experience basically all the symptoms of food poisoning for 12-24 hours. It happens every single time we eat something with lots of iron in it if we don't restrict ourselves. I'm talking 5oz of steak is too much and will have me literally vomiting... I can only have 2oz as my max. My mom can't eat an entire serving of arugula. Liver? I'm literally in the hospital.(joking, but seriously we get very very sick)

I always thought this was a thalassemia thing as that's what my mom told me, but I've been searching recently and it doesn't seem like this is a common experience at all. I've recently learned that other symptoms I attributed to thalassemia were actually something else and I just want to see if anyone else here experiences this. It hasn't been worth bring up to a doctor yet because I just limit my iron intake and I'm fine. I've also never seen a hematologist or anything, every single doctor that I've told I have thalassemia to has responded with either "what's that?" or "yeah but it's beta minor so you're fine" and then never spoke to me about it again... Is that normal?

Posted Jul 6, 2022, 11:14 PM UTC

611
[deleted]•

[deleted]

10
EnvironmentalImage9OP•

That's what I'm starting to wonder. I honestly thought this was very normal until I found this sub lol. My mom's dad actually has haemachromatosis, but she got tested and it was negative so we didn't even bother testing me. I'm wondering if it might just be something different entirely. I honestly don't want to ask the doctor unless I have a hunch because they're just never helpful... I'm really sick of hearing "you're fine" when I tell them I'm in pain.

3
[deleted]•

[deleted]

4
EnvironmentalImage9OP•

I'll look into it, thank you! I'd love to figure out what's wrong so I can manage it better. This seems like a good place to start.

1
ravendaisy_eyes•

Absolutely is! I work closely with a hemotologist and regularly need infusions. So there are a few different variations of conditions. Some ppl become anemic and have very low amounts of iron, some have iron overload (I'm assuming this is you). My doctor told me that my food choices, like iron pills, can cause me to feel ill. I too can't eat leafy vegetables that contain a lot of iron and too much steak makes me feel very ill. For the most accurate information I suggest all thalassemia patients find a trusted hemotologist that they see often to manage blood levels.

3
EnvironmentalImage9OP•

I'm definitely going to ask for a referral. It's just been brushed aside my whole life, but I've also had health problems my whole life that are unexplained. I'm ready to finally get some answers and medical treatment. Thank you so much for the response!

3
ravendaisy_eyes•

Good luck!

2
[deleted]•

[deleted]

2
jan3toc•

This reminds me of Alpha-gal syndrome, I heard a story some time ago about a lady becoming "allergic" to meat all of a sudden. Worth a google if anything...

1
Chart_Caster•

I would suggest you consider a full iron panel with your next blood labs. If iron overload is present, you have choices. Chelation drugs or phlebotomies. I chose the old-school phlebotomies because they do not pose the dangerous side effects of the chelation drugs.

1
EnvironmentalImage9OP•

I'll ask, thank you! I would probably also choose phlebotomies if I need it.

1
Valuable-Macaroon341•

Hi, I just got a CBC back today that showed high MCH and MCHC. I talked with my mom and she said I was diagnosed w/ a minor form of thalassemia as a kid (I didn't know that). I've had a lot of chronic issues like high liver enzymes, hypothyroid symptoms (in the absence of any autoimmune diseases) and joint paint, and I read these can be associated w/ excessive iron. I'm going to schedule an appointment w/ a hematologist to see what's up.

I also feel a lot better after getting blood drawn and I went vegan several years ago and felt so much more energy. Maybe I do have too much iron? The vegan diet contains more oxalates and phytic acid, which inhibits iron absorption.
In the Googling I've done today, I've seen some recommendations that people w/ thalassemia avoid high iron intake. It sounds like it really depends on your specific situation though.

1
w4r0wn4ge•

I have the beta thalassemia and I eat a lot of red meat and never had this type of problem.

1
Brontonomobay•

I was taken iron supplements before I was diagnosed and was making myself so sick. I would feel like I was going to black out and barf a few times a week. Thankfully my doctor did a bunch of tests leading to my diagnosis and now I just take B vitamins no iron and haven’t had an issue. I still try to avoid iron rich foods if I can though, just to be on the safe side.

1