Advice please : After some advice for... - Pernicious Anaemi...

Pernicious Anaemia Society

32,669 members24,064 posts

Advice please

marsupial profile image
11 Replies

After some advice for my 16 year old daughter. She has always been clumsy but over the past few months is getting more so as well as forgetful, extremely tired and eye sight problems to name a few b12 deficiency symptoms. She is vegetarian but eats eggs and dairy and she has been taking 1000 iu tablets 3 tines a day in the hope this may help. I think she should have done blood tests to check for possible causes but if she is checked for B12 will it show as high? Should she stop taking the tablets for a while and then go to gp? I have b12 deficiency but have not been informed it’s P.A. although I believe I have it. Thanks in advance.

Written by
marsupial profile image
marsupial
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Seth12345 profile image
Seth12345

Supposedly you need to get off the tablets for months (4?) before a b12 blood serum test will report results accurately.

You can also get her methylmalonic acid tested but I believe this will also read incorrectly since supplementation has started.

marsupial profile image
marsupial in reply toSeth12345

Ohh blimey , 4 months of nothing during her 1st year of A levels!! Probably best to do it now though than wait till she’s worse. It might not even be B12 (I hope) . Thank you for your advise😊

Seth12345 profile image
Seth12345 in reply tomarsupial

You can get the advice of others. Are you in the uk? If so, you might really need to be careful of getting a test result of a normal b12 level. I know the NHS is notorious for relying heavily on this test result for future treatments.

fbirder profile image
fbirder

Two scenarios for if she has low B12 -

1. It's because of her diet. Although eggs and dairy do contain B12 it's not a lot. You would need to eat a 2-egg omelette, washed down with a glass of milk every single day.

2. It's an absorption problem.

___________________________________________________

You could stop the oral supplements for four months, then have a blood test. If it's low B12 then the test should show you that it is. However, it won't tell you if its low because of scenario 1 or 2. Then you won't know if she can cope with just pills.

You could have a blood test now. If it's low then you know that it's an absorption problem. If it shows that her B12 is high then you know it was dietary and she just keeps taking the pills.

marsupial profile image
marsupial in reply tofbirder

Thanks, she has told me she will probably start eating meat again as she feels so bad, she’s been veggie for about 3 years now so feel bad for her.

Bonjourtristesse profile image
Bonjourtristesse

I was vegetarian for around 20 years from about the age of 15. At around 16 I was tested for glandular fever because I was constantly exhausted. I stopped being vegetarian around 10 years ago although I suspect I do not eat as much meat/fish as an omnivore otherwise would. I have digestion problems which I'm not sure whether is owing to poor diet (I had an eating disorder) or being a long term vegetarian.

There is a facebook group called Recovering Vegans and Vegetarians for people considering or transitioning back to eating meat. The majority did so for health reasons.

marsupial profile image
marsupial in reply toBonjourtristesse

Thank you, I will get her to have a look. She has suffered since a small child with digestive issues but gp always just gave stool softners!

Nackapan profile image
Nackapan in reply tomarsupial

Probably why she avoiddc meat as harder to digest.

If she does want to change her diet i would start with fish and chicken breast . It is easier to digest. Hopd the reason for her digestive problems are found. Mh daughter when younger was clumsy ect.

Shes now an adult and finally diagnosed with hypomobility (Ehlos danlos) HEDs . She was also severely b12 deficient . There are huge differences in severity.

Worth a thought if at the doctors to rule out .

Only my thoughts

marsupial profile image
marsupial in reply toNackapan

Thanks for your thoughts, my 15 year daughter is Hyper mobile and has vitiligo but seems ok in other respects so I do wonder if it is the vegetarian lifestyle of my other one that is making her symptoms worse, I’ll try Chicken first as she never ate fish before.

Sleepybunny profile image
Sleepybunny

Hi,

Have you considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

Links about B12 Deficiency in Children (mentions teenagers)

b12deficiency.info/children...

stichtingb12tekort.nl/engli...

Above link is from Dutch B12 website so units and reference ranges may vary from those in UK.

Useful B12 book

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link below for up to date info.

BSH Cobalamin and Folate Guidelines (UK document)

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

BNF Hydroxycobalamin (Children)

bnfc.nice.org.uk/drug/hydro...

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents etc.

healthunlocked.com/pasoc/po...

Some of the links may have some upsetting details.

I am not medically trained.

marsupial profile image
marsupial in reply toSleepybunny

Thanks, I will have a look. 👍

Not what you're looking for?

You may also like...

Advice please

I was diagnosed with pernicious anaemia last year and had a long battle with my doctors to get...
maxfogarty profile image

What is the probability of an adverse reaction to a 1st B12 injection?

Hi All, My mum is very poorly at the moment. She already had mobility issues but over the past few...
Adsypadsy profile image

Advice please

Just wondered if anyone could give me some advise? I was recently diagnosed with anaemia and...
SMunn profile image

Advice Please

Had my loading dose in July and over the last couple of weeks a lot of my symptoms have come back...
wadeyJ profile image

New here and desperate for advice on B12 deficiency

Hello I'm new here and desperately looking for some advice. My Mum has recently been diagnosed with...
exile profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.