I am like so many others trying to jump the health hurdles I keep facing and recently feel like I've been running straight into them instead of avoiding. I am currently waiting for a Endocrinology appointment to have a test for Addison's having had some recent blood tests that showed concerning low cortisol. I was diagnosed in 2015 with PA and the outcome was that I was treated as if I had no neurological involvement. Back then I had far more faith in GP's, asked less questions and wasn't aware that some of my underlying (getting older) problems were possibly related. I had a course of six B12 injections over two weeks and sent on my way with 12 weekly frequency.
My health last October deteriorated dramatically and I asked for a repeat booster doses. I wasn't aware of the NICE guidelines and hadn't discovered the Pernicious Anaemia Society, along with all this advice.
I have been recently supplementing the now 8 weekly NHS injections with extra private ones. My problem is that I am not able to work due and I'm worried about decreasing health and increased long-term damage. I am not academically minded and finding this completely overwhelming mainly due to tiredness levels and basic science level.
Support and advice most welcome
Written by
f1ddle_st1cks
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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 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Maybe read little bit each day over a couple of weeks so it's not overwhelming.
Some links may have details that could be upsetting.
Hi! Yes I am a member of the PAS and am currently reading Martyn Hooper's latest book (although I will admit I might need to read it again to help better understand the science). The society and your links are absolutely invaluable! I think my partner will be encouraged that I am now able to moan about the battle for appropriate medical support to other people
If you get the chance, I recommend these two books as well.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Detailed with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
There might be copies available from your local library service. I've also bought second hand copies of these.
I suggest that you opt for self-injection . I’m sure that those private injections are expensive . I will send you information about that and what it involves by private messaging.
You could try getting extra injections from your GP , but it is extremely difficult .
I reckon self-injection is my only route forward long-term. I did ask my GP for more injections back in October last year but that was before I knew I have a "leg to stand on" regarding the original treatment after my initial diagnosis and then only as if I had no neurological involvement. I am going to at least request this again, but armed with the PAS info to send alongside...
See Point 1 in the letter writing link I mentioned in my first reply which is about being under treated for B12 deficiency with neuro symptoms present.
Links below outline recommended treatment patterns in UK
GPs can find the same info in their BNF book Chapter 9 Section 1.2
If you had neuro symptoms prior to treatment starting or have since developed neuro symptoms, I think you have a good case for asking for loading injections to be restarted. I suggest in a letter as letters to GPs are supposed to be filed with your medical notes.
For those with B12 deficiency with neuro symptoms, it's a B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months. There is no set time limit as to how long the every other day loading injections can continue for, could be weeks even months of them. It can be helpful to keep a symptoms diary ....could be evidence of improvement or deterioration in symptoms to show GP.
Doctors can use their clinical judgement to prescribe B12 more often if they feel it's in the patient's best interests. Some GPs tell UK forum members that they cannot prescribe B12 more often but I think what they actually mean is that they don't want the hassle of explaining to their management or the ICB (Integrated Care Board)/Health Board why they are prescribing outside of guidelines.
If GPs are reluctant to prescribe adequate treatment then may be worth pointing out in any letter or conversation that inadequate treatment increases the risk of developing permanent neuro damage, including damage to the spinal cord, as this may get their attention. Maybe pass on PAS article about SACD.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Does your GP have a list of all your symptoms, especially all neuro symptoms and definitely any that affect your spinal area? I used PAS list below and added extra symptoms at the bottom.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If you haven't already, I suggest finding out what's in the local B12 deficiency guidelines for your ICB or Health Board as GPs are likely to refer to these. If you can't find them online or by searching forum posts here then best bet is probably to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a liunk to or copy of them.
Some local guidelines are unhelpful. See blog post below.
Keep an eye on your local guidelines. They can change at short notice sometimes and are very likely to be reviewed after new NICE guidelines for PA and B12 deficiency are published in November 2023. Changes don't always mean an improvement....see blog post above.
Link to draft of new NICE guidelines for PA and B12 deficiency
Click "project documents" then "consultation comments and responses" for a good insight into current issues around diagnosis and treatment.
There has been a move in UK to put more people onto high dose oral B12 as an alternative to B12 injections. Evidence that high dose oral B12 is as effective as B12 injections is limited...some UK forum members including myself report it has little or no effect. I suspect it is primarily a cost cutting measure.
I find it very interesting that you were mis diagnosed with bi polar. I think my mother was as well. Unfortunately I only realised this after her death or I would have done something. She had many B12D symptoms - pins and needles in her legs, unsteady gait etc.
Thanks for the link. Yes, I had just started to explore this. Sorry to hear about your mother! I feel very lucky that I have not needed medication for bi-polar for 19 months, with no repercussions (it was type 1 I had been diagnosed with too). I haven't officially had my diagnosis removed just yet but it is in the pipeline. The implications of PA and how it affects so many critical aspects of ones physical and mental health is huge! Just wrapping my brain around it slowly.
"I haven't officially had my diagnosis removed just yet but it is in the pipeline"
If for some reason they won't remove the diagnosis, you can ask for a note to be inserted in medical records saying you don't agree with the diagnosis and why.
Exactly like my mother too .I’m sure that my mother had Pernicious Anaemia, and died from it . i knew. nothing about P.A. then unfortunately . The exhaustion , strange walk and the pins and needles . Towards the end the dementia . … If only I had known then what I know now ….. …
Pretty sure my mum had B12 deficiency, watched her fade away with dementia. By the time I understood B12 deficiency, it was too late for her.
Three people all with mothers who showed symptoms consistent with B12 deficiency...I wonder if part of the problem is poor understanding of or maybe even prejudice/gaslighting of women with health issues.
I think you are right Sleepybunny. Most GP's seem to think all women suffer from hysteria and most B12 symptoms are in their head hence the overprescription of antidepressants. My GP couldn't do that to me because I physically collapsed and ended up in A&E. I think he was humoring me when he referred me to a neurologist. Big surprise when the neurologist backed me up and recommended PA test.
My mother didn't get dementia but her life was cut short by choking to death on a jacket potato in hospital. Dysphagia is a B12 symptom.
We’re about to do battle with the doctors again, and I will need to use some medical terms, which we have always tried to avoid in the past.
So the strange walk (our erstwhile ‘funny walk’) becomes ‘gait ataxia’, as a demonstrable, observable, objective not-in-the-mind symptom.
Then a funny thing happens. Start with ‘gait ataxia’ on the NHS site, and there are all sorts of possible causes, mostly in the brain, but not a sniff of PA, or even SACD.
But start with PA, and lo and behold, you get to gait ataxia as a possible symptom, via SACD. Which is where we think it is coming from.
But due to this strange asymmetry in the literature, I expect they will want to progress this from the brain end, and not the spinal cord end. So we are going to have to hope they can see there is no brain impairment at all, which they will no doubt test for, as yet another obstacle to what we see as the plain-as-day diagnosis of PA the medical profession seems inexplicably reluctant to make 😢
we are lucky here in Australia. I SI every second day and get my supplies myself.
With PA you need to keep up a regime of regular injections until all neurological symptoms diminish- and after that maintain a regular routine dosage for life
Drs mostly know very little and we need to accept this and sometimes confront their lack of knowledge with our own
I completely understand your concerns and frustrations regarding PA and the current medical profession. I too am still symptomatic with the current treatment and I feel completely overwhelmed with trying to understand the intricate details of PA. Doctors are very dismissive with my symptoms and I must say, I’ve had enough with the whole system. I’ve recently discovered a textbook (on Amazon) called:
‘Vitamin Deficiency in Clinical Practice’ by Doctor Joseph Chandy. I’m attempting to get an understanding of PA on the cellular and biological level so, I can pass on to my GP, the tests that need to be done as to why I’m so symptomatic and in a lot of pain. I recommend PA people have a look at purchasing this book and to familiarise themselves as to how easily things can go bad when one component of B12 cycle goes wrong and what needs to be done to correct this. Best of luck to you all.
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