Wherever we are in the world, we are all in the same boat…

There are many problems associated with diagnosis and treatment of B12 deficiency and many of them boil down to a lack of education of health professionals. They have all been done a disservice.

This is a worldwide problem.

Serum B12 blood results
I help people to access the treatment they need and always urge people to get a copy of their current and historical results. In some cases they have been found to be below range, but the result has been ignored whilst the patient has continued to deteriorate. Remember you are legally entitled to your results.

Our GP’s may be unaware of the limitations of the serum B12 blood test, that it can miss seriously deficient patients and that this can lead to a within range result being batch filed and labelled as ‘normal’.

Lack of education of this common condition means that our GP’s don’t necessarily understand that they cannot wholly rely on the blood results. The clinical picture is of utmost importance and if the patient is symptomatic it’s vital they access correct treatment for B12 deficiency.

It is important to note that the Active B12 test (holoTC/ Holotranscobalamin) is not gold standard either, remember that the clinical picture is key.

Treatment with tablets
Too many GP’s in the UK (and in other countries) try and treat B12 deficiency with B12 tablets and if the patient includes animal products in their diet, like the one the result belongs to below, then their deficiency is not caused by dietary lack and injections are essential. If you cannot absorb B12 from food then a tablet taking the same route won’t work either.

NICE Guidance states:

  • Not thought to be diet related — administer hydroxocobalamin 1 mg intramuscularly every 2–3 months for life.
  • Thought to be diet related — advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection.

The above result at 144 ng/L is below range and is definitely showing B12 deficiency, the patient has many neurological symptoms and as I have said, includes animal products in their diet. Unfortunately this GP (and others in the Practice) believes that 50mcg cyanocobalamin tablets are the best way to treat this patient.

In reviewing these results, the GP added their own note stating:

“B12 low, script for cyanocobalamin and repeat 2 months”.

The second sentence originates from the lab and states:

“Note low B12, deficiency possible, treat if clinically appropriate otherwise repeat after 2 to 4 months and review.”

The issue with the lab note is the term: ‘deficiency possible’ –  surely this should read ‘definite B12 deficiency’?

All labs are different, all assay kits are different and all reference ranges are different. This lab below has a low reference of 150ng/L and in my area it is 220 ng/L, in East Lancashire it’s 110 ng/L. There is no across the board standard which help either the doctor or the patient.

The patient that these results belong to continued to feel unwell, had absolutely no abatement in symptoms but due to the supplementation of the 50mcg tablets there was a small raise in the serum B12 level to 161ng/nl. This confirmed to the GP that the patient could absorb B12 and they were instructed to continue with the tablets. In fact, the patient was told that they could ‘definitely absorb B12’.

CRIKEY

This would not have happened had the GP been properly educated about B12 deficiency.

Waste of time, money and NHS resources
This patient went back to see the GP repeatedly due to feeling no improvement and each time their B12 serum level was tested. Each time they were told that they should continue with the tablets for another 2 months. How frustrating is it to even read this, never mind live this?

My recent involvement in this case provided the information the GP needed to treat the patient as per NICE Guidance and how cyanocobalamin should only be used for patients with B12 deficiency of dietary origin.
However, I was told that the Practice were following another protocol and that they felt the patient hadn’t taken the tablets religiously and this was the reason for no improvement.

WOW

After nearly a year of zero improvement in symptoms I think most of us would be hard pushed to take a tablet which was proving to be a pointless treatment.

A tricky but simple case
Thankfully common sense has now prevailed and the Practice has decided to give the patient the correct treatment of B12 injections. It took many phone calls and emails for this to be actioned. The people I asked to speak to were often ‘in a meeting’ but I don’t give up.

It should not be that any patient is left for 11 months without correct treatment for this common and easy to treat deficiency.

This practice were very annoyed that I was advocating for the patient, they said that there was no need for “3rd party involvement” however in this case and in fact all that I get involved in, there absolutely was a need.

Until education on B12 deficiency is the norm, it will continue to be that outside agencies are needed to help health professionals of all disciplines to understand the seriousness of this condition and what correct treatment should be.

We are all the same
Many of us know how difficult it can be to challenge a doctor, especially those that have their heels so firmly dug into the ground.

Fortunately I learnt long ago that it can be unsafe not to challenge doctors, that they are no different to the rest of us, that they are not infallible, and they can correct their mistakes if they choose to – if the infrastructure allows them to.

I am thankful to all those health professionals who appreciate being furnished with the correct information about B12 deficiency and who regularly use my site.

Best wishes

Tracey
www.b12deficiency.info

You can read testimonials here.

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19 thoughts on “Wherever we are in the world, we are all in the same boat…

  1. I was prescribed the high strength tablets near the start of the Covid-19 pandemic after receiving the injection for 11 years. My GP practice told me that my B12 deficiency was due to poor dietary intake. I challenged the practice on this as the cause of my deficiency had never been established. When first diagnosed in 2009, I increased my dietary intake of B12 – milk, eggs, yogurt, yeast extract. This made no difference. I also stopped the injections for a period whilst I tried an over the counter tablet. My GP calculated the dose I would need to match the dosage of the injection. Later testing showed this to be ineffective and I resumed the injection.
    Back to Covid times – I took the high strength tablet for about 6 weeks. It didn’t work. I became incredibly tired, breathless, unable to exercise and unable to concentrate at work. The practice then agreed to give me the injection. Now that I am due again, the practice carried out an intrinsic factor test which came back negative. Therefore, it is saying that I will be put back on the tablets.
    I go through a cycle of 2 months of good health and vitality, 2 weeks of diminishing energy levels and 2 weeks when I have no energy to do anything other than merely exist. I am so frustrated that no account is being taken of the fact that I have attempted to rectify my B12 status through diet, and yet have felt no benefit whatsoever. Do I need to die before I’m taken seriously?

    • It is shocking that we have to ‘jump through hoops’ in order to access a very cheap, effective treatment Kath. Using the IFA test as a means to stop treatment is beyond ridiculous!
      Thank you for taking the time to comment, best wishes Tracey

  2. Unfortunately the idea that people with PA can be adequately treated with oral B12 is something that is spread, even by some who should know better. I’ve lost count of the number of times I’ve read that “1% of an oral dose is absorbed passively” despite there being no good evidence to support this.

    Most studies looking at this assume that anybody with a B12 deficiency has PA. Few bother looking at the subjects diet. None look at medication they may be taking (PPIs or metformin). They do not use a sufficiently large sample size.

    It is not good science.

    I really wish I could use pills, sprays, patches, etc. But they do nothing at all.

    • I agree Frank and I gain no benefit whatsoever from those supplements either.
      I don’t have PA but I too need injections, PA is just one cause but it is continually and incorrectly stated as the most serious form of B12 deficiency.
      This needs correcting and understanding by our health professionals so that all people with an inability to absorb B12 from food are treated equally.
      I add this link for anyone reading this who is not aware of the many causes – https://www.b12deficiency.info/what-are-the-causes/

      Best wishes Tracey

    • Thank you for your comment Liz, I am sorry to hear this, have you tried talking to the Practice manager about this and asking for your ampoules to be given to you on prescription? Best wishes Tracey

    • I’ve had mine cancelled also. Been told I can’t absorb it via tablets. I told this to the person who rang me and was just told to contact them if my symptoms worsen. I went to the drs in December with pains in my foot that come and go and have found out that that could be a symptom- I had no idea. In a bit of a quandry

  3. I was diagnosed back in 2009 with a level of 85ng/L when I was 17, I was treated with antidepressants and advice to buy OTC vitamins, despite no dietary reason for deficiency and a family history of pernicious anaemia. For 8 years I then I had levels that zigzagged between 120-224 (whilst on 1200mcg oral b12), doctors insisted that low b12 was just my normal or that my levels were fine because I’d survived on less. Formal treatment plans included offers of more antidepressants and advice to nap less and exercise more and my b12 was frequently labelled satisfactory with lab advice to retest or treat ignored and not passed on to me.

    A formal complaint concluded that my treatment was perfectly acceptable and inline with guidelines. They did not answer WHY I was not offered injections or offered further testing if there was doubt over diagnosis (e.g. homocysteine, MMA). When I finally won my battle to get injections at 25 (b12=127ng/L) and asked for more frequent injections in line with BNF for neuro symptoms (I was awaiting a neurologist referral so they obviously believed I was having neurological symptoms) a haematologist wrote that the sense of wellbeing from b12 injections is addictive, and reduced my injections from 2 to 3 monthly. When I complained he was unaware that the BNF allowed more frequent injections than 3 monthly.

    • I am honestly shocked at the haematologist comment. The idea that not feeling awful is preferred to feeling like hell?? What a novel idea. I can’t help but wonder if it’s part of the healthcare problem of dismissing and downgrading the suffering from women as being “made up”, “attention seeking” and generally unimportant. Just an awful thing for him to day.

    • I’m not shocked; I had a neurologist tell me the same thing. She told me I was addicted and I would have to wean myself off injections, even though I have neurological symptoms that are well controlled with frequent treatment. I did not go back to her.

      • Wow. How can a medical professional think it’s possible to be addicted to a vitamin. That’s like saying you can be addicted to having breathing and should wean yourself off that. My mind is blown at that level of negligance.

  4. When I first went to my Doctor and said I suspected B12 definiciency, based on my symptoms, my blood test came back 136. I had all the B12 sources in my diet and was still given tablets for 2 months. At this time, I calculated I had been having progressively worse symptoms for about 2+years. At the time I had week long pins and needles in my hands, exhaustion, the serious head fog and struggle to get through a day doing the most basic of minimal activities and chores.

    Even though I was in the deficiency zone for that practice, the NICE guidelines of injections was never mentioned. I went back after a month of the tablets saying there was no change in my symptoms, to be told since I hadn’t done the full 2 months on tablets I had to wait. My levels had risen slightly but no change in effects. I changed practice to a different surgary after 6 months of fihgting with the Doctor and waiting for more blood tests and taking tablets. I was also too exhausted to be able to fully deal with this at the time. Eventually, in the new practice, starting again with the symptoms and blood test, the Doctor there was happy to immediately start a 2 week series of 6 booster injections before starting regular at first 12 weekly injections. I felt the difference the day of the first booster injection. It was a shock how much difference that one injection made.

    By the end of that first month of injections I felt like a new person. I have been lucky, I was also able to change my schedule from 12 to 10 weeks when I was getting returning symptoms before my regular shot was due. The fact that it was luck that I managed to find a Doctor and surgery that immediately treated this is sad. I have also not my injection cancelled as yet due to Covid19. This treatment should be the norm, not luck of the draw.

  5. My husband was prescribed oral rather than injections and had major absorption problems due to an active stoma. He ended up with Korsakoff’s syndrome which affected his quality of life. He has subsequently passed away. I asked for him to have injections but was refused.

  6. My dad was diagnosed with B12 deficiency 5 years ago and suddenly they told him his levels weren’t low enough for injections and told us to buy our own tablets. Symptoms are worsening the tablets aren’t strong enough and he is very low in himself having access to the injections ourself for us to pay would massively help him.

  7. I am sad to read so many B12 deficiency sufferers still only get three monthly injections. As Elizabeth Kubler Ross once said ‘pain is what the patient says it is’ – not what health professionals etc. think it should be. Luckily I have a GP who listens to her patients and provides me with B12 injections weekly which I self administer. I have never looked back. It took me a while to admit some of my symptoms were due to B12 deficiency having suffered all my life with chest/lung problems. Mostly GP surgeries are more concerned about being inundated with so many injections if given weekly but patients can be taught to self administer or even pharmacists or relatives be enlisted to help out. So anyone out there who finds B12 injections work for them but need more than three monthly injections the tackle your GPs again and again not everyone is in a position to purchase the injections and this involves sourcing abroad as we can’t purchase them over the counter in Britain. The B12 deficiency.info site has been running for many years now and contains well researched facts and information with plenty of advice and help for those who need it. It is up to us to be responsible for our own health and GPs should be aware that not all patients are the same ‘one cap does not fit all’ so take the bull by the horns and talk to your doctor if mt doctor can do it so can yours. I know from experience how difficult some people find it to be in conflict with GPs but there is help on the B12 deficiency.info site so don’t be afraid to use it. If you have been diagnosed with B12 deficiency you are well on your way if three monthly injections are not sufficient then fight for more as is your right.

  8. If I was this patient I would change my doctor pronto! As I understand the UK system you have to register with a medical practice to be covered by the NHS. How difficult is it to change doctors if you are dissatisfied with the one you’ve got now? Obviously if you live in a rural area you may be somewhat limited for choice, although my observation of the UK is that other than the Scottish Highlands or the Hebrides most “rural” locations are never far from a reasonably large town. Not like here in Australia where the nearest doctor may be a 100-mile round trip away.

  9. Hi Tracy this is not an isolated case it happens all over the UK and it becoming standard practice, being cited now as first line treatment in many local guidelines (I’m a practice nurse)

    National/BSH guidelines are being ignored

    • Dear Claire
      Thank you for your comment.
      I agree, too many people contact me about this.
      Are you able to help your GP’s to understand what they should be doing?
      Do you have your own Practice Protocol? Does that advocate tablets too?

      Best wishes
      Tracey

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