Pernicious Anaemia Society
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Update: picture of sons results

18yr old son stomach bloating, breatlless(sigh) recurrent mouth ulcers, fatigue, poor memory.

Bloods: June b12 142 June rechecked b12 174. Latest bloods for Ferritin 26 (20-330) folate 9.4 (4-20) also vit d 18 (30-300). B12 active 33 (25-108) MMA 265 (0-280) IF and Part Cell negative. Family history of PA (mum and grandfather) other autoimmune def in family - Vitiligo . Please tell me I'm not imagining things - I think my Son has PA!

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Here's what NICE say about the GPC antibody test...

If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia,

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I tested positive for parietal cell antibodies one year and negative for them another year. My point is that the tests are not infallible and it is possible to have PA even if the antibody tests are negative.

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I've contacted NHS England this afternoon and made official complaint about surgery!

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Hi

Your not going mad what is clear is that your son's symptoms are familiar to B12 deficiency and his B12is very low as is his Vit D. His ferritin level is just getting by and should be over 100 for optimum levels, folate is midway but could benefit from supplement but don't start until B12 deficiency is investigated. Is your son vegetarian or vegan? And have you spoken to the pernicious anemia society for advice?

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Hi holehead, he's got a normal diet. I've spoken to Martin, but not much help really!

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How supportive is your GP over the B12 as many have little interest. Have they suggested any injections as his level is withing NICE guidelines for medication with neurological symptoms, have you a copy of the latest Guidelines? I know how worried you will be having a 19 year old son myself who is complaining of tiredness etc and my own B12 deficiency do hope you get sorted as the other option is Self injection as I do. If it comes to that then do come back as there are many good people who will support you.

Mark

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I've asked GP for b12 and she won't do it. He has been referred to heamatology and a second referral to Gastro! I'm myself si and I do have a pa diagnosis.

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I don't think I've seen the NICE guidelines, I have BSCH guidelines even showing that to GP made no difference other than referral to Haemo. She's basically passed the buck to the so called professional - who I believe from other comments on PA site don't follow their own guidelines. What hope do we have if that's what we're facing!

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The NICE guidelines suggest that doctors (in the first instance) to seek urgent specialist advice and refer the patient to a haematologist.

Click on the link below, then on "Scenario Management" then scroll down to "Treatment for B12 Deficiency"

cks.nice.org.uk/anaemia-b12...

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Thank you Clive, I had not seen this before.

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Hopefully the haemo will be able to find something concrete for him. You could ask if they are prepared to give him a trial period of doses to see if there is any improvement in his symptoms.

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Hi LisaHelen, I've asked Gp for trial- got a resounding No!

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Think one of the worst things i have come across is the fact that if you go onto the nhs site to find out about a condition it gives you access to the health unlocked forum where we will then go to get patient perspective and additional answers to any condition but many gps refuse to even acknowledge that b12 has any part to play in the upkeep of our bodies.

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It's very easy to get B12 injections from vets for dogs and cats. And yet people are treated like this!

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Hi,

I hope you get the help you need soon. Have you considered contacting the HDA patient care trust?

HDA patient care trust

A UK charity that offers free second opinions on medical diagnoses and treatment

hdapatientcaretrust.com/

HDA pct tel no 0207 935 8366

HDA pct online contact form

hdapatientcaretrust.com/con...

"I've asked Gp for trial- got a resounding No"

I don't understand their reluctance to consider a trial if he's symptomatic for B12 deficiency and there is a family history of PA.

BMJ B12 article mentions the importance of treating someone if they are symptomatic

bmj.com/content/349/bmj.g5226 see 5th summary point

Have you ever pointed out to them the potential medical consequences of not treating someone who is symptomatic for b12 deficiency eg possible SACDSC sub acute combined degeneration of the spinal cord

SACDSC

article on SACDSC in PAS library available to PAS members

pernicious-anaemia-society....

Story on Martyn Hooper's blog

martynhooper.com/2010/09/21...

ncbi.nlm.nih.gov/pubmed/191...

Letters to GP

Some forum members have written letters to GPs containing symptoms, extracts from relevant articles/guidelines including consequences of withholding B12 treatment.

In my personal opinion, I think letters can be better than just talking to GP because they are a permanent record of issues raised. My understanding is that letters have to be filed with medical records.

GP/patient relationship

You mentioned making an official complaint. You may find that relationship with GP might become strained. Might be worth finding out what your rights are as sometimes GP practices get rid of patients by saying that relationship has broken down.

There may be something useful on this thread I commented on recently

healthunlocked.com/pasoc/po...

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