I had my B12 checked last year and my level was 119. B12 shots every week have been life changing for me. I haven't had checks for PA but my levels drop if I don't get a shot every 1-2 weeks.
I noticed my 12 year old had the same ghostly palour that I originally had and asked for her levels to be tested. Her B12 was 208 & Vit D 20.
Doc has given her a Vit D & B12 shot this morning but says she needs an endoscopy to correctly diagnose PA.
I was wondering whether anyone has any pointers as to what else should be looked at. She has an identical twin who shows no signs or symptoms of B12 deficiency.
Also, my Doctor has a special interest in B12 deficiency and says that in order to function normally, most people should have a level above 1,000, preferably around 1,400, which I have found to be true for me.
That's so interesting. Dr Joseph Chandy, who founded the B12d Support Group here in the UK, originally started his practice in his native India. When he treated neuro symptoms in his UK patients with B12 shots as often as they needed them, his colleagues reported him to the GMC! What a messed up world.
I've never heard of endoscopy being used to diagnose PA. Has your daughter had antibody checks (intrinsic factor and gastric parietal cell)? Would her doctor start treating her anyway, just in case she improves?
Yes, this is very much the ethos here and has been life changing for me!
My daughter has a different Doctor than me as she is under a paediatrician. She had a Vitamin D shot and B12 shot today and cried blue murder so much so that the Doctor said it might be best if they teach me to administer them She said she has to do endoscopy and draw more bloods to make a Pernicious Anaemia diagnosis. I presume this is where she will test for intrinsic factor and gastric parietal cell abnormalities.
I'm keen to find out whether she definitely needs shots as opposed to tablets as she was such a sorry sight after having injections today
Oh joy! I don't envy you, but your daughter may actually feel calmer if you do the jabs. Her B12 level is low enough to justify jabs until she improves.
I have to inject my squeamish husband - both he and his father faint at the sight of blood and needles - but at least he doesn't cry like a 12 year old!
My sister, who was vegan/vegetarian for many years had a battle to get her severe B12 deficiency diagnosed and it was an Indian doctor who finally agreed to give her monthly injections. Many Indian doctors, like Dr Chandy have a greater knowledge of the symptoms PA/B12 deficiency due to the high percentage of Hindu vegan/vegetarians.
Yes, they have far more experience with it and a huge percentage of people here in the South are vegans. I feel blessed to have been diagnosed and treated here. I wish there was more awareness generally though. People can be very dismissive of PA, they just don't understand how debilitating it is.
Most B12 is absorbed in the ileum so if there is a problem then the ability to absorb B12 from food will be badly affected. PA is one possibility - an auto-immune response that attacks either the parietal cells or intrinsic factor. Surgery affecting the ileum (which includes gastric by-pass in some cases) is another possibility - though suspect that is unlikely here - low stomach acidity (which can be a result of PA as the parietal cells produce acid) is another possibilty - frequently looks like high stomach acidity so gets treated with PPIs that make the situation worse.
Guess that the endoscopy will be looking for damage in the stomach but not sure if it goes as far as the ileum - so will see if there is any damage there that points to PA ... and could pick up other problems with the ileum that might affect absorption.
Does sound like you are in for a tough ride as it's all going to be quite scary for your daughter ... and a B12 deficiency may have affected her ability to cope with stress - certainly affected mine from ages 10 through to 52 when I started treating myself.
Thank you for this info. very useful. I'm sorry you've been suffering since you were 10. I think it makes it harder suffering with it myself and knowing just how deathly it can make you feel. She's such a shy, kind, sensitive child, I'm feeling a little bit heartbroken and what makes it harder is how ignorant a lot of people are about B12 deficiency.
Sorry to be so negative.
I hope you are managing your symptoms well. I just can't imagine coping with it from the age of 10, respect to you!
was thinking as I rushed out that it might be worth looking into other forms of delivery for your daughter - I mainly use nasal spray which works well for me - and would be a lot less scary than having a needle jabbed in you. May be worth talking with the doctor to see if there is anything they can recommend of that sort that is available in India - it's such a big place sure someone out there is doing it. Sublingual tablets and sprays can also be effective for some people - as can skin patches.
I didn't find out that I had B12 problems until I was in my 50s so just had years of living with it because it was totally overlooked as a possibility by GPs - however, you can't change the past. Things did get a lot worse in my 40s and 50s and actually prefer to focus on the fact that I now have a life whereas for many years I had an existence that I just wanted to end.
Really hope that your daughter picks up soon.
Whilst there do seem to be some genetic factors involved in PA in the proper sense many problems need a combination of genes and environmental factors. Identical twins can be quite important to scientific research as it can provide an opportunity to look at the interaction of genetic and environmental factors.
Hi again, just googled nasal spray. Do you source yours from the UK? Can only see availibity in the US - Nascobal. Will ask my Doctor. Made me question why it isn't the first choice for maintenance of levels after initial loading especially in those who have phobia of needles.
Yes, I get mine from the UK - company called detox people.
They have a german product called YULIV as nasal spry and also do some of their own which are suspended in oil rather than saline - and are called nasal drops - YULIV is probably the easier product for a child - it's like using a nasal spray for alergies - whereas the nasal drops mean putting your head back.
Thank you, I will ask about this. It does seem strange that my Father (who visits twice a year), me and now my daughter have all been diagnosed since living in India!
I'm having to fight to get my son (11) help with his b12, his level was 182 (range 180-900) no one from the NHS is listening to me and keep telling me he's fine GP sent a referral for an endoscopy for him, and I got the letter saying waiting lists are to long send him to a paediatrician, he has one but I seem to be running around in circles!
I'm glad your daughter is getting the help she needs, think I might move!
I'm really sorry to hear that. I can't believe how ignorant medical people in the UK seem to be about this. I have seen a difference in my daughter only 2 days after her Vit D & B12 jabs. Can you find someone with a special interest in B12 deficiency and ask for a referral? Good luck and best wishes to you.
Thank you, I have PA myself and self inject weekly after getting very ill over Christmas, and 3 monthly injections just don't help
I would inject him myself but wanted to fight the NHS to try and get them to understand but I seem to be talking to a wall, we have decided to start b12 spray to see how it goes, and I'll be keeping a symptom diary and I'll keep fighting them as much as I can
I could be coming back to UK soon and I guess won't be getting my b12 shots every 1-2 weeks I haven't tried injecting myself yet. Where do you source the b12 from? I suppose if I few more GP's/Consultants suffered from PA (as my Doc does) you might suddenly find B12 injections more tailored to individual needs. Do let me know how your Son gets on. I'm still reeling from my daughter's results a bit x
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She said she has to do endoscopy and draw more bloods to make a Pernicious Anaemia diagnosis. I presume this is where she will test for intrinsic factor and gastric parietal cell abnormalities.
I don't envy you, but your daughter may actually feel calmer if you do the jabs. Her B12 level is low enough to justify jabs until she improves.
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