Anemia caused by Thalassemia - Pernicious Anaemi...

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Anemia caused by Thalassemia

Alexa422 profile image
8 Replies

Hello,

I am new here and wanted to see if anyone could offer any help. I have always been anemic due to a Mediterranean blood disease I have, beta Thalassemia minor. I never really treated for it as they say supplementing will not help as my body really does not utilize iron in anyway. I was hoping though that there would be something that can help. I am also hypothyroid and the low iron levels are affecting my ability to absorb my thyroid medication. Any help would be appreciated.

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Alexa422
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Alexa422 profile image
Alexa422

okay thank you!

Foggyme profile image
FoggymeAdministrator

Hi Alexa422. I'm so sorry that you're having a bit of a rough time with thallaseamia and thyroid issues.

As Hidden says, unfortunately we don't have the expertise to offer proper support for this in our forum.

I've searched Health Unlocked and there is another forum that should be able to,offer support and help: The Sickle Cell Socierty forum. If you post your question there I'm sure they'll be able to help you. Here's the link to the forum:

healthunlocked.com/sicklece...

They also have a website, so it might be worth having a look there.

About your potential thyroid issues - there's also a thyroid forum here on health unlocked and the folks there are very knowledgable about all thing thyroid so sure they'd be able to help and support you. Here's the link to the thyroid forum:

healthunlocked.com/thyroiduk

About the possibility of iron deficency anaemia - my understanding is that people with thalassemia should only take iron supplements in the case of diagnosed iron deficency anaemia - otherwise iron supplements should be avoided. So perhaps best not to take any over the counter iron supplements on a just-in-case basis 😀

So..might be a good idea to ask your GP to do a ferritin blood test (one of the markers for iron deficency anaemia). Better still if you could,persuade her/him to do a full iron panel (serum iron, transferrin, saturation etc.) as this will give a better indication of true iron status in the body.

So...hope you don't leave with the idea that we're not good for very much here 😀😀.

Folks here are very good at all thing to do with B12 deficency, so if you ever feel the need for advice about that, we could certainly help and support you with that.

And incidentally, while I'm thinking about B12 deficency...people with thyroid issues often develop B12 deficency and there are many cross-over symptoms between that and the symptoms of thyroiditis so...

It would be well worth asking your GP to test your serum B12 and folate levels (B12 needs good levels of folate to work properly, since they work together) and do a FBC, just in case you also have an undiagnosed B12 and/or folate deficency. It's also worth noting that GP's often say results are okay when they're not. Bumping along the bottom of the reference range is not good enough for some people. So...another so..if you do get tested and want to get copies of your results and post them on this forum, together with the reference ranges, we can help,with interpretation and advise about how to get treatment from your GP, if needed (GP's are often ill-informed about B12 deficiency so it helps to go along with a little knowledge tucked up the sleeve 😀.

If you want to find out more information about B12 deficency, see the PAS pinned posts to the right of this page when you log on (or at the bottom if using a phone).

And finally...just wondering as you say you've never been treated for the thalassemia...as you're having problems, if you're not under the care of a haematologist, perhaps your GP would consider referring you to one (would be usual practice for anybody with thalassemia).

Take care and good luck Alexa422, hope you manage to find the care and support you need, and pop in again if there's anything else we can help you with 👍

Gambit62 profile image
Gambit62Administrator

haven't found the actual studies but this University of Michigan article includes reference to patients with thalassaemia tending to have higher levels of B12 deficiency so may be worth asking about getting B12 tested as well.

Thalassaemia is going to mask one of the classic symptoms of B12 anaemia - macrocytosis.

uofmhealth.org/health-libra...

Alexa422 profile image
Alexa422 in reply toGambit62

Thank you, yes I am b12 deficient

Jeast profile image
Jeast

I also have b thal minor. Drs tend to be confused by the lab work. The guidelines advise that b thal can mask b12 def., because the labs are either what drs expect or so unexpected that they disregard the labs altogether. It's possible to have concurrent b12, iron, and b thal. It takes some digging and maybe a little experimentation, trust your symptoms.

Alexa422 profile image
Alexa422 in reply toJeast

I am deficient in b12 and iron but can't get my levels up, how do you manage your deficiencies ? I need to get levels up so my thyroid meds start to work

Jeast profile image
Jeast in reply toAlexa422

Are you def. in both?

Alexa422 profile image
Alexa422 in reply toJeast

yes, always have been no matter what I take to supplement it. I should probably be doing b12 shots but am not sure how to get them.

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