Pernicious Anaemia Society
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Hi there, was just wondering if this had happened to anyone else. Got a call from the nurse today an hour before my jab, advising that they are withdrawing my B12 injections. Due to testing negative for IF Factor in 2016 they will no longer treat me. They won’t provide supplements etc and have said that I need to get it through my diet. If I feel Ill in 6 months then they can test my bloods again. The nurse was working though a whole list of other people in the same situation.

I just wondered if anyone else had this happen to them?

Everything is being based on the fact that I’m IF negative so apparently have no issues.

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Get in contact with the Pernicious Anaemia Society. They get a lot of this nonsense.

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Yes we hear a lot of cases like yours . The fact that you got a negative I.F.antibody test result does not mean that you don’t have PA . That test is notoriously inaccurate . Get in touch, as fbirder says, with the Society. They can tackle it for you .

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write to your GP pointing them to the BCSH guidelines which they can access through the BNF but which can also be accessed here

onlinelibrary.wiley.com/doi...

pertinent facts

a) your diet is not deficient in sources of B12, ruling out the possibility of a dietary deficiency

b) IFA test is not very sensitive and gives false negatives 40-60% of the time, so a negative result is a long way from proving that you don't have PA.

On the other hand the test is very specific so that if you have a positive result there is only a very small chance that that is wrong.

c) Because of this and the fact that there is no longer a good test for PA the guidelines identify 'IFAB negative PA' as a condition and the treatment for this is the same as treatment for those that have tested positive.

d) in any case there are a lot more causes of B12 deficiency than PA or diet - and very few of them are curable meaning that you need injections for life.

e) ask that your injections (and those of any other patients who have been put in the same position) are reinstated and that they treat patients in accordance with existing guidelines.

Personally I think that whatever penny pinching bureaucrat is behind all of this needs to be taken out and shot. The hippocratic oath places on doctors a duty to do no harm and ignorance such as this will cause harm.

And you should definitely contact the PAS.

pernicious-anaemia-society....

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Gambit "whatever penny pinching bureaucrat is behind all of this" I spoke with a friend who works as a manager with a CCG and they refused to listen to anything I had to say about B12, responding that "vitamins are just expensive pee" and that "there is no money".

Additionally, one of the usually-wonderful GPs at the practice I go to refuses to accept that the usual tests can be invalid or even look into the research.

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And also a B12 jab is ridiculously cheap . If a jab costs me £1.00, what does it cost the NHS? Yes ,there is the cost of a nurse ,(at least 5 minutes of her time ) but the surgery can get a nurses’ salary paid by the doctors’ friend, as we hear , The Pharmaceutical Industry .

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This is precisely why I'm happy to self-inject :) I don't have to worry about the injections being withdrawn, nor do I have to worry about getting thru 2 or 3 months before the next injection :)

I'm in control here!!! ;)

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My heart goes out to you Missmo79

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, certain contraceptives, anti-depressants or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do you "see yourself" in any of the above people?

Do you have any neurological symptoms associated with P.A/B12 deficiency?

As others have wisely suggested - contact the P.A. Society, it costs but £20 for a year's membership and they may intervene on your behalf.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for 46 years.

I wish you well

.

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Hi everyone,, .I was diag with b12 def f last Nov,level s were 169, got started on 6 injections, in jan this year,thanks to Clive i was tested for folic deff,came back 3.0. and b12 level was 2000, After 8 weeks I had my next b12. Then 8 weeks later (2weeks ago) had another blood test before my b12 inj, yesterday the surgery rang to say b12 blood test back and it was again 2000 folic 3.7 intrinsic factor negative, so my b12 leval s hadn't dropped since jan, my concern now is will they stop the injections, ?? Is it usual for your levels to be so high ?? I'm on omeprazole 20mg a day,so stomach cannot absorb b12, have peripheral neuropathy in feet and fingers,no improvement as yet,but being patient on that score. But feeling so much better in myself. So any answers please would be helpful. Thanks.

Patricia.

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All these replies are so British "nice." Which is really good advice and the way you should go.

I on the other hand would be down there having a videoed conversation with my gp asking how he or she can sleep at night knowing a lack of b12 can cause acute spinal cord deterioration. Then i would let the silence hang in the air until i got a response. Then i would calmly tell him or her to expect legal action for refusing my "medication"

Seriously, wtf? Even heroine junkies can get their "fix" legally (at least in the US) and here we are just wanting a vitamin along with some knowledge. And maybe at least a couple of tests to look for root causes.

Im having an "easily irritable" day.

Rant over

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