I don’t think I’d have even known where the blood form was to test for vitamin B12.
It’s definitely something I hadn’t come across as a midwife.
Even more interesting - before dual qualified midwife and nurse Samantha Nash was diagnosed, she’d never heard of it either, despite working with vitamin deficiencies in her infant feeding co-ordinator role.
Vitamin B12 deficiency is a disease of the nerves – the myelin sheath, which is the fatty covering of the nerve, becomes frayed so messages don’t pass easily.
In pregnancy, it can cause problems with a baby’s neural tube forming, meaning the spinal cord or brain can be exposed or damaged.
In adults, it can present just as severely as Multiple Sclerosis and can kill you.
The thing is, if it’s diagnosed early and treated properly it’s completely reversible.
In this conversation, we talk about:
- What vitamin B12 is exactly
- Why it's essential for the nervous system, and who's at risk
- Why it can be dangerous to take it orally
- Some of the reasons it's not being diagnosed, or is being under-treated
- Something very surprising about Entonox that we get to at the end too, which I know you’ll find fascinating and, to be honest, slightly worrying
- And plus, Samantha shares her overall bit of wisdom for aspiring, student and qualified midwives (love this bit).
We go into some experimental territory here in some instances, so I strongly advise if you come across a client or anyone else who you suspect has B12 deficiency, do lots of reading and speak to a haematologist (blood specialist) – and get the client or family to speak to their GP, research, and push to find expert advice.
Midwives can make a massive difference for this group of underdiagnosed women in their position as ‘determined advocates’.
For more info:
- NICE guidelines on B12 deficiency
- Could it be B12? - Sally M. Pacholok, nurse
- Diagnosing and Treating Vitamin B12 Deficiency Documentary
- US Film 'Sally Pacholok'
- Really excellent website for patients with B12 deficiency
- Conference (June)
When you've had a chance to watch the video, leave me a comment below to make the learning stick. What's ONE thing you didn't know about vitamin B12 deficiency that you'll take with you?
Massive thanks to Samantha Nash! We wish you all the best with you conference, and with getting better.
Much Love, Ellie x
That it can as devastating as ms and often misdiagnosed as ms
That it isnt routinely tested for and all the awful symptoms it has. I think i’m going to push the GP to test me for b12 deficiency. It would explain a lot! Interesting to hear the effects on pregnancy too, definitely something I will bare in mind during training. Im going to have to do some more reading and watch the film. Brilliant video and post learnt so much. Thank you! Xx
THANK YOU! I’m also a midwife that suffers from this condition and it is so coming yet so unheard of – I constantly go on about it to my colleagues! I hate being around entonox and try to avoid it also. I couldn’t watch your video as the sound didn’t work on my phone but I will watch it! I just wanted to add as a source for people the BCSH guidelines for folate and B12 deficiencies – this is a national haematology guideline for the condition. Also re gastric parietal cell antibodies and intrinsic factor antibodies as tests for pernicious anaemia – always good to do these to test for the autoimmune condition before any B12 therapy is commenced. Generally 5mg folate OD is needed alongside treatment of B12 as they work together in the body, and that thyroid issues are common alongside B12 deficiency. It affects all systems in your body, and can also be caused by digestive problems like Crohns, coeliac, and bowel operations, and any other malabsorption issues someone may have. I first became symptomatic in my 2nd year of training, felt very low, fatigued, couldn’t concentrate, memory loss, kept tripping over and more! There is also a Facebook group called Pernicious Anaemia/B12 deficiency for amazing information from over 11000 sufferers. Sorry if this info is all in the video but I just wanted to add in case it isn’t! Xx
I have discussed this within my own surgery alongside thyroid results & testing. GP commented on a blood test request form to the endocrinologist that i had a fixation. So I copied it for further reference.
Entenox wipes it out and can be used to treat carbon monoxide poisoning..
Well done Samantha for sharing all that you have endured. Hopefully you are now on the road to living a normal life again. The information given was very informative and has certainly made me think about the wider implications of vitamin and diet deficiencies. Good luck at the conference!
What is important is the early detection and that it’s completely reversible if treated properly. Samantha is pushing hard for awareness of B12 deficiency and I think that is the battle to include the blood test to catch it early. But also the shots needed to reverse the deficiency must be readily available once diagnosed. Are there other holistic approaches through diet or even vitamin supplements before diagnoses that can also be relied upon is my question.
I am very humbled that Samantha chose to promote this deficiency instead of hiding it. It’s a selfless act. Her family must be very proud of her.
I have PA and anemia and vit d difficiencies, the fact that the co factors are just as important isn’t well known. I have been diagnosed six years and have struggled to feel any better. I am worried now as my daughter (15) has now presented with low ferritin and vit d. Which is an extra worry as she has Charcot Marie Tooth which is a defect in the mylin sheath that can have devastating outcomes. I am now going to try to find out if there is more that can be done for her an myself. Brilliant Sam the more awareness we can get the better.
B12 not vit d for my daughter sorry brain fog at play
Are you a member of the PA group on Facebook? Lots of info about self treating if 12 weekly jabs aren’t enough. And yes definitely agree re co factors!
The thing I find amazing is the fact that despite it saying in the NICE guidelines that folate (folic acid) should never be given without testing b12 levels first, gp’s consultants and midwifes are prescribing it. Once on folic acid it can mask a b12 deficiency so it’s crucial to test b12 before supplying folic acid. After researching the subject I strongly believe that Post Partum Psychosis is potentially caused by a b12 deficiency following the birth because there are many neuropsychiatric symptoms so if mum was deficient pre pregnancy, plus entonox which contains nitrous oxide in a ratio 50/50 with oxygen plus the baby taking mum’s nutrients its no wonder that mum then suffers. Nitrous oxide inactivates b12 in our body. B12 deficiency/Pernicious Anaemia is hugely underdiagnosed and misdiagnosed, patients are even being told that they have leukaemia when in fact it’s a b12 deficiency. Despite having new guidelines published by the British Commitee for Standards in Haematology, some GP’s are still not treating patients correctly if they have even be tested for the deficiency in the first place. It’s a tragic situation and causing massive problems for millions of people in the uk, but is so unnecessary.
Uncertain if can be misdiagnosed as MS as NICE MS guidelines require MRI imaging to confirm lesions for diagnosis unless lack of b12 also displays as such?
A B12 deficiency can cause nervous system damage and lesions if left long enough untreated as deficiency in vit B12 can damage the myelin sheath on the nerves, however the lesions look different in MS and B12 deficiency but not widely known so lesions can just be read as MS but could be due to B12 def (Subacute combined degeneration of the spinal cord)
My 1yr old has just been tested and is deficient in B12. Lots of reading for me!
This is great, I was diagnosed and am lucky enough to have a GP who listens. I now have injections every 6 weeks and also I self inject.
The entinox link was new to me so thanks xx
Fascinating and very worrying. Hadn’t realised the effect Entonox has on it or that pregnant women could be masking the serum B12 deficiency due to taking folic acid. Thank you!
I saw the article re B12 and Samantha in the Daily Mail…. having just had blood tests for pins and needles in my feet and legs and sporadic appearances elsewhere Samanthas article and video has helped unravel the possibilities of the deificiency and it’s long term effects. Thank you.
For lots of people getting the diagnosis is the easy part, its getting the right and effective treatment afterwards which is a struggle.
Having been diagnosed with B12 def after becoming ill while working in delivery suite, I have to say the effects should be made clearer to midwives and students. Maybe anyone entering the career should be tested so injections can be started before levels drop to drastic levels due to entonox exposure. More worrying is deficient women using it in labour because they and their midwives are unaware of the seriousness of side effects of entonox use. I have tried to make fellow students and midwives I work with aware but feel I am not taken seriously.
That was done to me, as a midwife, exposed to Nitrous Oxide for 10 years, and feeling worse and worse in all sorts of ways – for quite a few years I thought it was because I worked nights, and could not sleep in the day, so I did not get enough sleep, but then researching it I decided it was hyper homocysteine, and B12 deficiency, and pernicious anaemia, I told my managers etc but they just ignored me! Then I got so bad I had to give up work 8 years ago. My GP tried to get me tested for homocysteine levels, but the pathology departs refused to do so, (even later when I was so anaemic, just collapsing all the time) with ferratin of 10, for years) and said my B12 was fine (even though I told them that as a vegetarian / vegan I took B12 supplements every day, so their so called tests meant nothing … Then later other GPs asked them to – they again just refused, again and again, saying I did not need it, and it cost too much!! Rubbish!. Even almost a years ago a professor said she would get me tested for homocysteine, MMA, active B12, folate etc, but I was never ever given any answer or result – there was no sign that homocysteine was ever tested for, and they just always say my B12 is fine – actually very high, even though I pointed out for years it just meant I had all the B12 supplements I took, in my blood, but it does not go into my cells (why it seems even higher, like those diabetes people whose insulin blood levels seem very high but just means it is not absorbed). Also they have never even done the proper active B12 test, and everyone always ignores me telling I have taken B12 supplements for 8 years, so the test will not be accurate anyway!! I have just had to try to treat myself … , though it did not really work till I finally started B12 injections, about a year and a half ago, instead of supplements ….(I knew I should do it ages ago, but I am so terrified of needles/injections I just did not have the bravery to try) – the difference was obviously within a couple of hours when I did though …