low iron: hello all, my 13th year old... - Pernicious Anaemi...

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low iron

jamaican1980 profile image
3 Replies

hello all,

my 13th year old daughter as low iron deficiency, doctors been doing tests on her for about a year now and every single test they do is coming back normal and the more iron she takes the more she lose, and she's not bleeding any where now she's going to get IV iron infusion once a week till they figure out why or to either send her to a research center.

am open to any suggestion or answer.

thank you.

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jamaican1980 profile image
jamaican1980
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fbirder profile image
fbirder

I'm afraid this forum is for people with pernicious anaemia - a totally different type of anaemia to that caused by an iron deficiency.

I really doubt anybody will be able to come up with any useful suggestions that haven't already been thought of by her doctors.

sbadd profile image
sbadd

Have they tested her b12 as my daughter is 13 also and pretty much has PA her iron and b12 were both low when initially tested for tiredness, its been a struggle with her iron dropping after taking more iron she finally jumped but then dropped back down again after dropping dose once she was at a level the doc was happy with, dropped from 23 - 10.6 within a month, she obviously has an absorption problem which we are further investigating, so just wondered if they have tested your daughters b12?

esteloca profile image
esteloca

Hi sorry about your daughter! I know it's rough on the entire family... Make sure they do a Celiac panel on her and check for b12 deficiency.

I was like her... even with iron infusions my iron, ferritin and hemoglobin stayed low. I didn't start getting better until I found a new Dr. that diagnosed me w celiac disease and pernicious anemia.

Many Dr's won't test for either -unless you tell them to so make sure they check for both even if you think she doesn't have symptoms!

I didn't think I had celiac disease because the symptoms you hear about are always like frequent diarrhea, vomiting, gas etc. However, there are lots of symptoms you never hear about like headaches, fatigue, constipation, feeling full, mood swings, iron deficiency and many more. Some ppl have no symptoms at all.

Not sure if she's anemic or just low iron but but imho she needs to be tested for both celiac disease and b12 deficiency anyway.

Her Dr may tell you there's no blood test for Celiac disease (my kids Dr. told me that when I asked her to test them) but that's not true. It's called a Celiac panel and it checks for certain antibodies that will only be in her blood if she has celiac disease.

Hope this helps and wish you all the best

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