Advise re my teen daughter - Pernicious Anaemi...

Pernicious Anaemia Society

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Advise re my teen daughter

Andypandy30
Andypandy30

Hi I’m usually looking for advise for myself but it’s my 14 yr old . I posted previously about my concerns for her in June of this year as I had noticed a change in her mood . I’m now convinced she has the same awful illness I have but as in my case her doctor won’t listen . I’m prepared to do whatever it takes so am needing some direction . Should I try sublinguals or patches for her as doctor says her bloods are in range but she is feeling fatigued and anxious and burning in her hands the last couple of months and the b12 spray is not relieving her symptoms . I’ cannot wait about on more blood tests and more arguments about what the appropriate treatment is . Please help x

6 Replies

I'd suggest you get a private active B12 test done before you start treating otherwise it will be nigh on impossible to get the docs to take her seriously ever. I used CityDoc. Good luck.

Thanks Fiona have sorted blood test now just waiting so I can go forearmed to doctor

Hi,

Have you spoken to PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

If you join PAS , you can access useful leaflets/articles on their website including two about PA in young people.

pernicious-anaemia-society....

There are stories on Martyn Hooper's blog about how PAS has supported parents and young people with PA/B12 deficiency.

martynhooper.com/

I am not medically trained.

Thank you I’ve been in touch with them . Advise is blood test first . As per Fiona’s advise . Just waiting now

Hi Andy. I'm so sorry about your daughter. It's dreadful trying to get anywhere with most doctors. I have read the replies below and agree with the advice they have given you. Unfortunately many doctors have rather poor knowledge of this horrible illness and what they call an ok reading of blood levels can be way below what is true. Please let us know how you get on. Hope you are doing better yourself?

I have to go to hospital on Thursday morning to get the camera down my throat again 😣 stomach has been playing up again. Hopefully don't feel so bad afterwards as the last time

Take care 🌞

Thank you Margaret . Hope you got on ok c

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