Getting my child diagnosed and treate... - Pernicious Anaemi...

Pernicious Anaemia Society

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Getting my child diagnosed and treated without doctor

Andypandy30
Andypandy30

What tests do I need to do for my teenager to rule out pa and can I go ahead and treat her myself as per guidelines . This is my second post today I’m so fed up with incompetent doctors . She has all the symptoms I have and as I am treated with injections I need to know what I can get done as surgery is refusing intrinsic factor and say her b12 is in range .

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Hi Andypandy30

Suggest you get your daughter's blood results (you are entitled to have them by law) and post them on here. Then our 'experts' can offer advice.

I'm no expert and would not be happy treating my child, although I self inject. I would rather fight with the GP to get her treated, even perhaps get Martyn Hooper involved.

Anyway how about posting those results and see what people come up with.

Thank you I will get them and post x

A first step could be to have her tested for Intrinsic Factor Antibodies . Medichecks do one for £69.00 . ( you do this at home ) If she has PA ,and the test is positive you could take the result to your GP , who would then have to treat her . A positive result proves that she has PA , but a negative test does not disprove PA . as you know if you read comments on this forum . So it is a bit of a gamble . Even people with “normal “ B12 blood serum results can have PA .Many doctors do not know this .

I was forced to go to a private GP at a Nuffield Hospital who tested me and I was positive

for IFA. My NHS GP accepted the result and started treatment, not sufficient, so I had to resort to S.I eventually , which is the cheapest and most successful solution if a GP will not give sufficient injections to keep symptoms at bay . A private GP could treat your daughter with B12 injections , but I have no idea of the cost .

I am assuming that your daughter has a good diet with enough B12 ( meat , fish , dairy products and B9 — green leafy veg. Peas etc. and that you have tried sub-lingual B12 lozenges )

Anyhow that could be a first step . Best wishes .

Thank you Wedgewood . I tested negative for intrinsic factor but was getting injections at the time last year so will do one for me and for my daughter as I know they can show a false negative . Iwe both eat a really healthy diet something iv always been particular about , so wasn’t sure , does that mean we don’t absorb from our food ? As in b12 folate vit d and iron which seem to be our problem . I will then consider sublingual for her or spray to see if her levels come back up or symptoms ease x

As well as the good advice from beginner1 and wedgewood, I'd recommend Sally Pacholok's paediatric version of her book:

amazon.co.uk/Could-Be-B12-P...

More helpful links in case you haven't come across them yet:

b12deficiency.info/children...

b12deficiency.info/what-are...

Summary of latest BMJ research document, which recommends various tests, although none are completely reliable (GP should be able to access the complete document):

bmj.com/content/349/bmj.g5226

As beginner1 suggests, a good idea to join the PAS, if not already a member, as they have pages for professionals to show your GP and may be able to help with vital support.

Warm wishes for a diagnosis and better treatment for you both.....

Andypandy30
Andypandy30 in reply to Polaris

Thank you Polaris I am going to read up on the links and get something sorted for us both

PS If you are going to get your daughter tested for anything get it done before you give her spray or sublingual as they will skew the results.

If you make an appointment with your GP and go with your daughter and tell her symptoms then the doctor should by law give her a blood test.

But if you’re saying there’s no way your doctor will do that then I would get membership with the PA society to act on your behalf as doctor shouldn’t refuse blood test.

I think that will be best and the final way is to have it done privately (intrinsic factor) test but I do know that it’s only 50% accurate as it can give you a false negative.

So that is a 50/50 chance of being positive.

There are other tests which I’m not too familiar with but I’m sure you’ll get a reply from someone on here who knows.

You shouldn’t give up with the doctor though. If you list all her symptoms on paper and go with your daughter and INSIST that she gets a blood test then there’s a chance he might do it as it’s common sense.

(I woonder what he would say if you showed him/her the replies you get on here).

Just incase you do;

DOCTOR, WITH ALL DUE RESPECT, THIS YOUNG LADY HAS ALL THE SYMPTOMS POINTING TO PA SO ITS COMMON SENSE TO GIVE HER THE NECESSARY BLOOD TESTS NEEDED TO CHECK IF SHE HAS PA PLEASE, THAT IS ALL WE ASK.

THANKYOU

Please do share the outcome with us on this forum, you’re not alone.

Wishing your daughter good health and a positive outcome.

🙂

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