12 year old pa?: Hi again everyone. It... - Pernicious Anaemi...

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12 year old pa?

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Hi again everyone. It's been 5 months since blood tests showed my daughter was deficient in B12 & Vit D. We are British expats living in South India.

She has been taking Reserve Plus capsules which contain Mecobalamin Alpha lipoic Acid, Inositol, Folic Acid & Zinc. She has been taking them for 5 months and her levels have gone up to 934. Her Ferritin was 6.1 so she is also taking Iron Pyrophosphate Tablets. She's complaining that the tablets, particularly the B12 make her feel sick.

Something doesn't add up though, why would her body be able to absorb B12 from a tablet and not from food? I switched her to the school Doctor who is very laid back about it and has blamed symptoms on 'teenage angst'.

Just looking for suggestions if anyone has any as to whether I should be pushing for tests to see why she is B12 & Ferritin & Vit D deficient or whether it could have been a temporary problem. I don't particularly want to go down the route of invasive tests if they're unnecessary - it's all private healthcare here and I do wonder sometimes whether it's sometimes a 'ruse' to make money.

Thank you in advance :)

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clivealive profile image
clivealiveForum Support

Hi Hidden there's no mention of Folate in the list of ingredients of your daughter's medication.

"Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine.

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, lima beans, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, lima beans, salmon, orange juice, avocado, and milk."

in reply toclivealive

Hi Clive alive, many thanks for your reply. The B12 capsules she's on contain folic acid too. I do try to incorporate all of those things into her diet but as we're living in India, sometimes good quality produce and meat are hard to come by. Fruit and veg are farm fresh but with unregulated pesticides commonly used here, I wash them to death and some of the nutrients with them I suppose :(

Sleepybunny profile image
Sleepybunny

Has she had an IFA (Intrinsic Factor Antibody) test which can help to diagnose PA? it's still possible to have PA even if IFA test is negative.

b12deficiency.info/b12-test...

labtestsonline.org/understa...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn hooper

"Could it Be b12" by Sally Pacholok and JJ, Stuart. I believe there is also a paediatric version of this book.

Other UK b12 websites

pernicious-anaemia-society....

b12d.org

Lots of b12 info in pinned posts on thsi forum.

Causes of b12 deficiency

b12deficiency.info/what-are...

I am not a medic just a person who has struggled to get a diagnosis.

Hi Sleepybunny, thanks for replying. No, she hasn't had any tests to find out why she's deficient. She has responded well to the treatment and has colour in her cheeks again. I will have a read up, thank you but I was just wondering if she does have PA would the tablets absorb into her system as they seem to be?

Gambit62 profile image
Gambit62Administrator

1% of B12 is absorbed outside the ileum so flooding the gut with really high doses of B12 is a way of getting enough through and there have beena large number of studies showing that it works well for lot of people - but not everyone.

I am assuming that the tablets you have been given are going to be 1000mcg - which is about 400x RDA so if you are abosorbing 1% that would mean 4xRDA getting through.

Also, an absorption problem doesn't necessarily equate to no absorption so there could also still be a bit being absorbed.

Some people have problems with different forms of B12 and it may be worth trying hydroxo or cyano tablets to see if these are tolerated better.

in reply toGambit62

Thanks Gambit62, I'll take her back to the doctor in the holidays to see if an alternative might be better for her.

Sleepybunny profile image
Sleepybunny

I am surprised that she has not had an IFA test especially if she is symptomatic for B12 deficiency.

See links below for lists of B12 deficiency symptoms. I gave my GP a copy of PAS list with all my symptoms ticked.

pernicious-anaemia-society.... click on Symptoms Checklist

b12deficiency.info/signs-an...

The PAS has members from around the world and are helpful, sympathetic and agood source of information. Messages can be left on their phone. May be some delay in a response as office was flooded recently.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

There is a story on Martyn Hooper's blog where he was rung by a doctor in India which might be of interest.

martynhooper.com/2016/09/10...

Is there a family history of B12 deficiency?

pernicious-anaemia-society....

Hi Sleepybunny, I think the fact that she screams the place down when they put a needle anywhere near her has caused a very conservative approach to tests and treatment. She's a VERY sensitive child. She has an identical twin who shows no signs of any deficiencies at all but if she did, would cope much better with it all, such is life :( I have a B12 deficiency caused I think through Microscopic Colitis but again they haven't tested why so not sure if it's a familial trait.

Thank you so much for all the links and info. which are very much appreciated. I will sit and read them later.

blondie2505 profile image
blondie2505

Ask for a celiac blood test as this can be one cause of vitamin deficiency. Its one cause worth ruling out esp if theres a family history.

Thanks Blondie2505, the pathologist recommended they test me for celiac but the Gastroenterologist dismissed it. I think I need to go forearmed and push for some answers. Your suggestions are very much appreciated, I do feel very isolated and alone sometimes. Very few people realise what a dreadful effect B12 deficiency has. Thanks again.

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