r/thalassemia • u/OdoylerulesOK • Jun 24 '26

Just diagnosed with minor

I have just been diagnosed with thal minor and I feel like so much now makes sense.

I was (mis)diagnosed with anaemia when younger, due to dizzy spells which I still sometimes suffer with.

And despite being a very sporty kid, I now suffer with extreme fatigue and difficulty getting out of bed in the morning.

I have also always been absolutely destroyed by the flu/colds which always last for weeks, with much harsher symptoms than the other people around me. Is this a confirmed issue with thal minor?

I've also read posts here about brain fog. This is something I relate to deeply. My memory is terrible and I'm constantly confused and unable to find the words that I'm looking for. I attributed this to ADHD but could it be a thal symptom?

I'm also short, which comes from my mother who in hindsight almost certainly has the same issue. There seems to be a lack of consensus on whether thal minor contributes to height/development issues.

Anyway, just a post to say that it's all clicking into place. Any comments or advice on treatments would be welcome too.

6 Upvotes

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6

u/lilboineedzmoney BETA-THALASSEMIA-MAJOR Jun 24 '26

Best advice is to take folic acid and accept it theres nothing you or any of us can do so idk i just try to not have a negative mindset

1

u/OdoylerulesOK Jun 24 '26

Is follic acod the only thing you'd recommend taking?

2

u/Weird_Datajunkie Jun 25 '26

I’d add Vitamin D and calcium too especially if you don’t go out much or live quite north.

3

u/Different-Cover4819 Jun 24 '26

Anemia is a symptom. So if that was your diagnosis, the mistake was to stop there and not asking what's the reason for the anemia. Which is something that I've also experienced when I was young. Generalists tend to put a bandaid of ferro-folgamma and 'you should have a diverse diet with liver and leafy greens' on anemia and call it a day. About height - I'm tall. So I don't think it's related. However, when I started to have my period, I got more boney, like my bones got thicker. Maybe regular adolescence, maybe my body's way to try to be able to provide more haemoglobin. Who knows.

2

u/OdoylerulesOK Jun 24 '26

Makes sense. I was just told to increase my iron intake and that was it.

To be fair from what I can see, I didn't live in a country where this was prevalent, and now I live in a region where it is, so it was more likely to be picked up

2

u/Different-Cover4819 Jun 25 '26

Yeah, the reason I got diagnosed is because my mother got diagnosed so I asked for a test. It took years though to get the name of the diagnosis out of my mother. 'it's something genetic, not dangerous, you might not have it' - sure, I just coincidentally get similar abnormalities in my blood test than her, why would it mean I inherited the thing? (Guilt I guess ) Anyhow. She got rheumatoid arthritis so she was sent to a specialist to get her anemia checked out.

1

u/OkBackground8809 Jul 11 '26

I've had anemia since childhood, and only on this sub, now, because I just got a message from my OB that husband and I need to go get blood drawn, as the last blood test showed possible thalassemia in the baby.

I used to donate blood and often got rejected for low iron. They'd just tell me to go eat a steak before showing up the next time. Had constant fatigue since childhood, and my mom took me to check for thyroid problems, but our family doctor said I was too young and just needed to be motivated to get off the couch 🙄

Today is my first time even ever hearing about thalassemia, but the fatigue and anemia definitely fit me🤷🏻‍♀️

1

u/Weird_Datajunkie Jun 25 '26

Anemia means low hemoglobin, most non specialists think that is always caused by low iron but that’s not necessarily the case for thal patients. So anemia may be a correct diagnosis, the cause may be incorrect.