Pernicious Anaemia Society

A little vent

My daughter 28y old has been diagnosed b12 deficiency today .... she went for a pill check ... The nurse casually said oh your last blood results say you are low b12. My daughter replied no I think you are wrong I spoke to my doctor about my results and was told all was fine.

To say I'm mad is an understatement, she been passing out and all the usual symptoms, she thought she was going mad.

Grrrrrrrrrrr

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oldestnewest

So what happened next? Did the nurse give any advice catherinejordan ?

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The nurse said to make the next available appt to see the doctor. .. which she has done. It's next Wednesday.

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Good! Will you be able to go with her?

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Yes Wednesday is my day off from work

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catherinejordan

If there was an angry face button on Health Unlocked I would press it.

I hope you get it sorted out and your daughter will soon feel well. Thank goodness for nurses.

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They are!

Here's a few to keep you going:

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Have some nurses and paramedics as well:

👷👷👷👷⛑⛑⛑⛑

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"My daughter 28y old has been diagnosed b12 deficiency today"

I hope at her next appt the GP will say what he/she thinks has caused the B12 deficiency because I guess what they think has caused it, will affect the pattern of treatment she gets.

Has GP seen this flowchart in teh BSH Cobalamin and Folate guidelines? My understanding is that it suggests that anyone who is symptomatic for b12 deficiency or has low b12 should have an IFA test (Intrinsic Factor Antibody).

stichtingb12tekort.nl/weten...

"daughter replied no I think you are wrong I spoke to my doctor about my results and was told all was fine."

Hope your daughter is able to get copies of all her blood results. the lab may have made a comment on her B12 result that an IFA test is recommended because of low B12 levels.

I have taken the following with me to appts where B12 might be discussed.

1) PAS symptoms checklist

pernicious-anaemia-society....

I ticked all my symptoms on the PAS list plus added any neuro symptoms that weren't on the list. Hopefully she'll get the UK treatment for B12 deficiency with neuro symptoms if she has any neuro problems.

2) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 or put "cobalamin and folate guidelines" in search box.

3) Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to give to GP if they showed real interest.

Summary of B12 documents

fbirder compiled a summary, link in third pinned post (last link in list) I found this useful when faced with a medic who wasn't up to date with B12 info.

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Ty for all that advice. I really appreciate it.

I'm so angry at how sloppy it has all been. She's not a young woman who complaints much about anything but she is clearly not imagining this.

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