I felt awful last oct and blood test showed B12 was at 21.6pmol/l so was given 6 loading doses.
I went back at their request and was told my B12 levels were in range (obviously) and that was that, no other appointments needed.
My intrinsic factor they tested a few weeks later was 2Au which I believe is positive for PA but their labs say range is 0-20.
My folate was quite low at 2:9 so was told “take supplements” I do. My folate went up to 4.6 in March and now has bomb out to 2.2 ug/l and B12 (serum holotrans) was 66pmol
To 62pmol/l in 2 months despite having an excellent diet including liver, salmon, sardines, Broccoli…tbh I couldn’t get much healthier and I still take a generic Tesco multi vitamin.
How do I fight the doctor refusing to listen to me and give me my B12??
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Bumblebee02
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Sleepybunny Has lots of links to help you fight your corner with your GP I’m sure she will be in touch . Otherwise , contact her . If the worst comes to the worst and you don’t get your B12 injections back , come here to get the information about self-injecting .That’s what we have to do to keep well if all else fails . Best wishes .,
Scientist, not medic. I did thousands of these tests before I retired.
In my opinion, [humble as it might be,] there is absolutely no value in reporting numbers and ranges for a test such as this one. Positive, Negative, or 'Equivocal, please repeat in 3 months' is a far simpler approach, but that might well depend on what computer system is being used. Using a reporting method for a numeric result when it ought to be an interpretive result is simply wrong. The concept of a 'reference range' for something that shouldn't actually be there is simply a cop-out. [I've been there.] Likewise, quoting AU/ml. Let's hope someone can define an AU for us.
The tests in use, although they're referred to as 'Intrinsic Factor Antibodies' aren't really antibodies as such. They detect an antibody-like reaction from the patient's serum.
the problem I’m finding is some are reporting serum holotrans in ng/l
Some are in pmol/l, others are plain b12 and again the reference values are differing. It’s ridiculous. Based on my recent thyroid test I’m boarderline hypothyroidism. But the lab changed their reference level and I’m now “within them”
I’ve checked my inorganic serum phosphate and I’m .6 which means I’m suffering from hypophosphatemia but they’re not taking any notice of that either. Methinks a letter to the practice manager/ombudsman is needed. I can’t change Dr as we get seen by whomever. And I’m out of the catchment area for any other surgery.
Sounds like you're organised. Letters are good, although it's a bit silly we have to resort to them, when emails are cheaper and quicker, but at least it keeps the snails in a job, delivering snail mail.
The reporting of blood tests is a problem. Mass concentration [g/L] versus Molar concentration, [Mol/L] and there is probably still no consensus. To convert one to the other, you need to know the agreed molecular weight of the substance. Changing from one system to the other is a major issue for labs too, and some analytes won't have an agreed molecular weight either.
In my journey (mainly towards treating myself as GP insists 5 loading doses fixed the problem) I have come to think that being low but 'acceptable' in a range may well be a warning sign, especially if the measurement is consistently low. If you write a letter, ask it be put on your record (the surgery 'lost' mine).
according to the lab ranges they are within them, but I’d had loading doses so they will be. That’s the part the dr doesn’t seem to understand. That and the fact he’s just suggested supplements without even asking about my diet etc. i literally eat enough b12 rich foods to boost my levels higher so they never should have dropped. To give me loading doses, and then tell me all is ok is ridiculous. Even if it was dietary I’d still should have 2 injections a year according to the nhs health authority protocol for B12.
It wouldn't matter how much B12 foods you were consuming if your body was not able to extract/process the B12 via the stomach. That's why the injections may be the only way to improve B12 levels since they bypass the stomach.
I don't know if it's allowed, but this is the video I go back to when I have doubts.
I posted a lot of information on the thread "Antibodies Negative" about 3 days ago which might be useful.
I'm assuming you're in UK.
It's helpful to know which country someone is in as it helps people to post the most relevant info. Patterns of treatment for B12 deficiency and type of B12 used can vary between countries.
Link about What to do next if B12 deficiency suspected or recently diagnosed.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Hi Bumblebee, the very same happened with me for b12, then exactly the same with zinc deficiency - three times.
I asked the same questions as you did here - I followed the advice and ended up getting all I needed amicably.
Essentially, I wrote a single, polite and informative email outling what the NHS/NICE says I need, and to ask them to put in to writing why I wasnt getting it.
I mentioned the PA society and encouraged them to contact them if need be.
They carried out an all practice review on pa and b12, and aligned their policies with the guidelines I got the treatment I needed. There was quite a shift in attitude - I get a yearly screen for deficiencies due to chronic pancreatitis and b12 regularly exceeds 2000 and the last time I was in, the dr said: your b12 is very high - isn't that great!
That being said, if you dont get the response, then I would change gp.
I eventually decided to self inject and that was the best route for me, it took me six months of injections every other day to get to a point where symptoms calmed down.
I finally decided to self-inject and did so EOD five months ago. The effect has been transformational. My decision was to flood my body with B12 for a year and then review. And so I will. It is the way forward for me without a doubt. I have most of my life back, even though I still get tired and I really have no tolerance for bad stress. So my decision includes not doing things that stress me. And how much better my life has become.
I hope what I wrote didn't worsen your distress. And I'm so sorry that you are in the position you are in. Is there anyone who can advocate for you? Have you spoken to the PAS helpline?
So sad it is that bad for you. You are not alone, people here will support you and we know how awful B12D can feel, and the misery of nobody listening! If you can manage to inject yourself, or find a friend who will, then SI is relatively cheap - syringe, B12 and needle cost me about £2 a go. I also take folate and vitamin D - altogether it costs less than 10 pounds a week. It is worth this much to me not to feel weak and confused and sore all the time. Even people (like me) who faint around needles do cope with SI if we must. I really hope you get the help you need.
I would like to say fight for it but my experience has brought me to a dead end. I have no faith in the NHS in my part of the Country (Gloucestershire) I do hope it's not the same for you.
My story seems to be typical to quite a few but there are some that have better experiences. I currently have no support from my GP and refused any B12 injections until my MRI results are back and that was 10 weeks ago and have heard nothing. Saying that I do encourage you to keep pressing on, arm yourself with knowledge of PA and don't give up even though I have. I've just run out of steam with it all 😔
I’ve penned a polite but firm email to the practice manager, adding links to the PAS and their webpage. I’ve queried their knowledge on B12 treatment and basically, armed with a ton of facts proved I have to be treated and the last paragraph let them know I’d be contacting the ombudsman if they “ignore” the facts.
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Advice sought for a 12 year old with underactive thyroid
Blood results
How to monitor injection results 
