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AIBU?

Thalessemia

6 replies

Nicebucket · 08/03/2016 22:55

I went for a full health assessment today (we get those through work health insurance) and I've been diagnosed with Thalessemia

The purpose of this thread is to get anyone else who has this condition to share information!

I've always had low heamoglobin or anemia so I had flagged this to the team doing my checks. Once they did a full blood profile, they confirmed that it was Thalessemia and not anemia like I'd thought before.

She said the low heamoglobin and something called MCV count indicated this.


Even though the doctor explained things to me, I'm still confused about what this is.

Obviously I don't have the life threatening serious kind, because I generally feel ok and I'm alive!

But I was a very sick child and I'm extremely prone to infections. I have low energy levels, feel cold all the time and get tired quickly. Is this because of Thalessemia?! Does anyone else have this condition and similar symptoms?

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TheDuchessOfArbroathsHat · 08/03/2016 23:13

This might be better in the Health section rather than AIBU. I hope you get some answers though.

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SelfRaisingFlour · 09/03/2016 07:28

I carry the trait for thallesemia, but don't have the disease. Both parents have to carry the trait for a child to have a possibility of having the disease. My father didn't have it nor my husband. My daughter also carries the trait.

Carrying the trait can make you prone to anaemia. I thought actual thallesemia was a very serious disease and requires people to have regular blood transfusions. Children with the disease used to die very young.

It might be that you carry the trait rather than having the disease. I think there is a charity for thallesemia and sickle cell. You should probably have a look at their website.

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Nicebucket · 09/03/2016 07:44

I see, then perhaps the doctor meant that I carry the trait.

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Nicebucket · 09/03/2016 07:45

I'm trying to relate this to all my other symptoms though, not sure if it's connected.

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SelfRaisingFlour · 09/03/2016 08:37

I don't know what kind you have, but thinking about it, you really need to talk to your doctor about what kind you have and how it might affect you. I had a look online and there are two types - alpha and beta both with different severities as well as minor (carrying the trait).

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LurkingHusband · 09/03/2016 09:44

Mr DB was diagnosed with β-Thalessemia-minor, aged 32. It finally solved a mystery as to why he sometimes was rejected from giving blood as anaemic.

It was an accidental diagnosis - he works in genetics and was in the US doing some research, and a colleague made a comment about European genetic stock which prompted the test. As it's a genetic trait (expressed on one allele) it was suggested I got checked too (that was fun). Turns out I don't have it.

As he commented, it was a good job he ignored everyone saying he was anaemic, as taking extra iron is not only useless, but dangerous.

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