Advise and support needed : What do I... - Pernicious Anaemi...

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Advise and support needed

Andypandy30 profile image

What do I do next ? My teenage daughter has had blood tests done last year when I first started noticing symptoms such as mood changes fatigue and more recently tingling . All her blood tests came back in range apart from being low in vitamin d which Iv been getting up to a better level . Doctors of course put everything down to being a teenager . I’m so upset she has this illness that has robbed me so much of my life I really don’t want her going through this as I have . If I can do anything I want to make things easier for her . What will I ask off doctor now or what else can I do at home ? She’s been using spray for a year but symptoms are worsening

13 Replies

Can she had her bloods redone this year to see what her vit D is now and her B12 and iron status ect. Actually Is? Being a teenager I'd hard enough isn't it. Good food good sleep and as less stress as possible and stay off Facebook! !

Andypandy30 profile image
Andypandy30 in reply to Nackapan

Thank you I am still waiting on doctor to ring me back . No appointments available . I know she has this Illness but just need them to agree to treat her . Yes I will ask for more bloods and pray that something shows up though she has been taking b12 spray to ease her symptoms and rich folate diet . They won’t treat her in her symptoms alone .

Nackapan profile image
Nackapan in reply to Andypandy30

They need to listen to her symptoms, and find a reason for them and to treat her

Hope you get an appointment soon

Andypandy30 profile image
Andypandy30 in reply to Nackapan

Thank u

Do you have the results from last year's tests?

Andypandy30 profile image
Andypandy30 in reply to fbirder

Will post in morning fbirder if you’d have a look please

She needs to be off any sprays /supplements for 4mths before you have her retested or they will falsely effect her result.

Get a copy of her blood test results from last year , they have to give you them by law. All ok can mean at the very bottom of the range in gp speak and in some areas the start range for b12 is stupidly low and would qualify for injections if you lived in the next area along. I think the guidelines mention a level below 200 ( which is still low).

Actually, I would get her retested while using the spray. If her levels are much higher than they were last year then you know that there's not an absorption problem.

Andypandy30 profile image
Andypandy30 in reply to fbirder

Oh I understand yes that may tell a tale I will post bloods as soon as o get them

Andypandy30 profile image
Andypandy30 in reply to fbirder

Thank you

I would insist on a “therapeutic trial loading dose of B12 injections” this is a diagnostic tool in that if it helps despite “normal” blood results, you are diagnosed with “Functional B12 Deficiency” which is explained on the NHS website as basically deficiency of no known cause & not showing in blood results.

This happened to my daughter, by age 12 she was in a wheelchair on a good day for 2 years & usually too ill to leave the house. As far as her doctors were concerned, her B12 blood results looked quite good at 412. Knowing half my family, me & her dads sister have PA, we fought for the trial of 6x B12 injections over 2 weeks & in under 2 weeks she was walking again, sleeping again, much more mentally stable & just so much more “alive”

NICE etc acknowledge the serum B12 tests are unreliable & advocate trialing B12 if symptomatic, so are in your side & it’s negligence to diagnose no B12 issues, without trying the injections

Oh & you can still have low active B12, which is B12 your body has processed with IF into its usable form, but high serum B12 levels, which is the NHS B12 test. The serum B12 test measures ALL B12 in the blood, both active & inactive, hence why NICE Guidelines acknowledge the tests as unreliable

She got them I’m so happy I got the result I needed xxx

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