Having struggled with sudden onset of strange symptoms last April ('buzzing' bottom extending to full leg, extreme fatigue, numbness in legs and no pain in arthritic knees suddenly, numbness in pelvic floor, hands and nostrils, pins and needles, hot/cold soles of feet, weakness esp in thigh muscles which appear to be wasting away despite yoga, wall sits, plank and daily walks, a sense of cramping and the need to stretch out leg muscles, loss of balance - falling over on walks when I can't feel the ground, tunnel vision, waking up from my sleep by panic attacks), I was tested for cauda equina after a ski accident, given an MRI scan and SSEP tests.
The doctor suggested B12 deficiency as my levels were low at 142, with no evidence of sign of PA (IF or megoblastic anaemia). Subsequently I discovered my mum and granny were hospitalised with B12 deficiency years ago. In June, I received a course of 6 x B12 injections and then nothing. I take oral spray methylcobalamin (Better You 1,200μg) every day.
Some of my symptoms calmed down a little (fatigue and ataxia), but the rest remain and are now starting to get worse again. So, I returned to the doctor in January and asked 'what next'? He wrote to the hospital neurologist to ask for guidance with the following quote "I think this lady is quite keen for us to give her further B12 injections, but I am loathe to indulge this." I didn't specifically ask for injections, but did want his help. I'm shocked by this strange attitude.
I don't understand why no one will help me. I've read a few posts on this site and it seems that I'm not alone. What is the reticence in helping people with apparently clear B12 or peripheral neuropathy symptoms? Is there a private B12 expert that I can find for a second opinion? I'm based in Gloucestershire.
Thanks for reading this far.
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Cotswolds23
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Welcome here. Please consider joining the Pernicious Anaemia Society for accurate information about the disease/condition. I use the term PA/B12D as the Intrinsic Factory test is so unreliable. The illness is poorly understood, often misdiagnosed, under recognised and under treated.
You have Family History. You had a low B12 test of 142 mg/L when that number measures both active and inactive B12. So, between 40 and 70 % can be inactive. Taking your result from anywhere to 85.2 mg/L and 42.6 mg/L respectively. You have signs and symptoms. Plus, loading doses of 1mg/ml of Hydroxycobalamin.
The bog standard usual wrong protocol is retesting blood levels then 1 paltry injection every 3 months. The British Haematological Society states not to once treatment has started. Plus, many of us simply cannot survive on every 12 weeks. Imagine not eating for that long !!!
Unfortunately, you live in Gloucestershire. It is the worst place in mainland Britain to have PA/B12D as reported by Ms T Witty :-
You are not alone in your battle. Like Nackapan said The Iron Clinic is available. The oral spray appears not to be helping because of returning symptoms. Some of us have wasted money on patches too.
I hope your ferritin, folate and Vitamin D levels are good.
The reticence is quite simply, there is no money in this disease. It does not support the pharmaceutical companies. Ten years ago, the medical students had nutrition taken off the syllabus. The most cost to a GP Partnership is paying the nurse administering the injection.
I have encountered many ‘strange’, ‘completely bonkers’ and ‘moronic’ attitudes on my journey. As many of us have.
Many of us do what we have to. Holidaying abroad, I waltzed into a pharmacy and purchased (Over The Counter) what my body fails to absorb and store.
Thank you Narwhal - so can I get b12 injections abroad? I saw there was a Brighton clinic who sold self injections. Feel so disappointed in our NHS system.
Unfortunately, if you look at what has been happening in the NHS in recent years of ambulance workers, nurses, consultants and junior doctors all going on strike. They are more than unhappy.
Hi, I get 8 weekly injections at my local surgery but in between self inject midway. I visit Spain often and get a B12 inj for €20 there at a Norwegian clinic but it is cyancobalamin not the hydroxy one I get at home. I can also buy a pack of 8 B12 ampoules for €3 ish to bring home. Much easier to source in other European countries. Good luck
Hi Cotswolds, I know our amazing forum members on here will give you plenty of appropriate advice on how to deal with NHS. So that of course, allows me to provide another very concise and very shaded view.
It is so difficult but there is definitely something going on because of your mother and grandmother.
Have you had folate, vitamin D and iron levels checked as they all go together with B12 deficiency as well as Active B12.
You could wait for your GP, but it could take years and neurology appointments can take ages and even today neurologists are still surprised with the results from B12.
As your supplementing there is every chance your body is full of Inactive B12 which will show on any NHS blood test as Serum B12 and not many hospitals have yet adopted the Active B12 test - so they would say you have plenty.
I also would try to get an antibody test for Anti-gastric parietal cell antibody (GPC)
You can arrange the blood tests at a local private hospital or through one of the national companies and then you can have a remote appointment with the Cambridge Iron Clinic.
The dosage of B12 you will need will be higher as you have neurological symptoms which the NHS undertreat. Self injection will put you in control of your own health.
The right treatment is life changing - any help you need along the way - we are all here for you, you certainly aren't alone
Hi, I am in Gloucestershire too- North East. I am happy to message about this.I had issues with getting treated but I do now have 8 weekly injection at surgery and I self inject in between. I also was IF negative, my B12 low was 130. My folate & iron were also at the very bottom of 'normal', these were not mentioned when first put on B12 loading doses, and I think these both crashed through the floor, I learnt for myself that I needed to supplement these too. And later also figured that potassium seemed to be a problem and low. So much stuff we have to figure out for ourselves, whilst feeling absolutely dreadful and struggling to function.
I cannot believe this:
"I think this lady is quite keen for us to give her further B12 injections, but I am loathe to indulge this."
What the actual ****?! I also do not understand the attitude of many GP's to the horrendous symptoms and debilitating effects that B12D/PA can cause, and the simple, effective & CHEAP treatment that can transform our lives!
Yes , the injection is cheap ( well we self- injectors know that ) It’s the cost of the nurses that the surgeries do not want . It has to come out of the sum that the NHS pays the surgery according to how many patients they have .
Yes I know, but it is usually slotted in as a split appt, ie. 3.5 minutes. And, all the more reason to actually teach us to self inject and give a prescription for the B12 ( ....maybe for more frequent injection too.....).Keep on smiling through! 😬
Absolutely! Patients are taught subcutaneous self-injection for insulin , so why not for B12 ? Well here in U.K. b12 is only injected by I.M. But on the packets of B12 that we get from Germany , sub-cut is endorsed .
Yep, I do sub cut, tried IM for my first one and it was way too painful and traumatic for me. I think maybe the SC route is a little less potent (for me anyway), maybe it depends how much of a fat layer there is for the B12 to disperse, I don't know. But I can do the SC and couldn't cope with IM, and personally I feel more confident and less concern about hitting a nerve or blood vessel etc.
I do wish there was a lot more of a nedia/coverage 'campaign' from all interested organisations, with a high profile celeb or two that have got B12D (think Davina McCall & menopause....!).
My story has a lot of similarities to yours. I too was given loading doses in 2016 but then the GP refused to give me more. I was given tablets instead which really didn’t work. I too had a buzzing sensation which nobody understood or acted on until 2021 when I had a panic attack in the surgery and a sympathetic nurse believed me that I was sure it was low B12 and, I think, persuaded the GP that she should give me an injection. What followed was a disgruntled agreement that I could have one every 12 weeks now reduced to every eight weeks. Perhaps still not great, but so much better than nothing
I have been experiencing panic attacks again and three weeks ago was given Sertraline for anxiety I’ve had many side effects but I’m coping with them and definitely feeling a lot lighter
Today is B12 day and I’m hoping that when it kicks in together with the Sertraline life will improve considerably I’m feeling very positive!
A selective serotonin reuptake inhibitor will NOT treat Pernicious Anaemia/B12 deficiency. GP Partnerships very readily prescribe this class of pharmaceutical drugs. They have targets to hit, receive points and funding from the Pharmaceutical Companies. Cotswold23’s GP too would not be loathed to prescribe antidepressants.
Side effects can be reported on MHRA Yellow Card Scheme
12 July 2010, Andrew Lansley unveiled a new health white paper (which eventually became law as the Health and Social Care Act 2012 describing significant structural changes to the NHS under the Conservative and Liberal Democrat coalition government. Among the changes announced, PCTs were to be abolished by 2013 with new GP-led commissioning consortia, clinical commissioning groups, taking on the responsibilities they formerly held. The CCG prime function is the imposition of massive cuts to primary care spending & that is what we are all experiencing now. Lets hope the new NICE guidelines impose a medically sound procedure.
Thank you Narwal10. The SSRi wasn’t prescribed for my B12 deficiency but for the anxiety I have been experiencing for a few months. I do think that it’s worse as my B12 dips but that’s just me worrying. I’m 78, and have always been anxious and inclined to overthink everything.
My GP sounds very similar to Cotswolds23’s when I was trying to get him to give me the B12 injections I mentioned NICE guidelines and he actually said ‘yes, but they were said by one very silly man’ I remembered it word for word and wished I’d recorded it!
However I am now receiving my jab every eight weeks which I’m extremely grateful for and hoping it will continue.
I am so sorry to learn that you suffer from anxiety. All of us are different in our approaches to life and our personalities. You know yourself better than anybody. If you feel and benefit from whatever medication then that is what works for you. Experiencing panic attacks must be rather awful and frightening. I do hope that these episodes have subsided.
Good to know that you are having your injection every 8 weeks. I bet at your age, you have lots of amazing and interesting stories. (My gran is 95 and one of my best friends).
Oh dear regarding your GP. It is a case of accurate knowledge being well above his pay grade. There were 164 stakeholders for Vitamin B12 deficiency in over 16s: diagnosis and management including the U.K. Health Security Agency, NHS England, Scottish and Welsh Government. Plus, since 2022, the CEO of NICE is female. What a doughnut.
I do hope Cotswolds23 can learn from all of our experiences, access the proper resources and make an informed choice.
Thank you so much Narwhal10 and so good to read the info about the NICE stakeholders. I wish I’d been brave enough to challenge him but I think my generation still has that (unwarranted) respect for GPs. Just back from my injection. It always feels more exciting than going for a night out!!
I don’t intend to be on the Sertraline for any longer than necessary but just at the moment they’re starting to help.
I’ve definitely had an interesting life. After surviving a 15.8 cm kidney cancer 11 years ago my husband and I have traveled to some amazing places. Your gran sounds amazing!!
This forum is so good, there’s nothing better than advice and information from people who are going through the same thing. I hope Cotswold23 is able to get the help she needs.
My opinion for what it is worth. . . . . . As best I see if ye get sent to an "ologist" it is a method to get you out the door today and we'll work with you later. . . . .
There are many who have had referal letters/comments worse that yours. . .
My GP here diagnosed me during Covid from my blood results and symptoms and as best I hear there are more B12D patients here than in other places certainly NI is a disaster beyond anything england has to suffer. . . . . . The great DR Chandy did not use specialists either so really there there is no need to have to be waiting on appointments and attending specialists who by the stats dont seem willing to do anything anyhow. . . . . There is nothing wrong with you Sir is usually what ye are told and certainly I was told just that. . . . .
To have been given B12 injections and then allowed to lapse is beyond most if not all known norms for B12 problems
But one thing I feel we must realise. . . . . . The NHS especially the NHS cannot and has not the resources to be giving B12 injections every few days. . .. . . . I dont think there is a clinic that can afford to provide such services. . . . . If you are a patient of such an enterprise count yourself very lucky but do not become complacent. . . . . .My Dad got a jab every month for years but that ended abruptly because a single doctor retired. . . . . . They put him to 3 month jabs and it was only a couple of years, we dont know how long until he didnt even remember to go get his 3 monthly. . . . . . That was many years before I knew anything about B12 Unfortunately the UK finds itself in the position of having a very underfunded health system. . . . . . It is a fact, thats that. . . . . .Clinics do not have the funds to provide these services. . . . . .It doesnt matter you say your entitled B12 comes very far down the "needs list". . . . . So you are not entitled. . . . . . . There are places within the UK where over 1 in 4 people are waiting over a year to see a consultant/specialist most with problems much more imediate than B12. . . . . . . I am outside of NHS land and monthly are available here for anyone with neuro problems but I only go every 3 months to keep the boxes ticked for both them and myself. . . . .
. The costs. . . . . The costs of SI are minimal beside the bigger picture. . . . . You have to tell yourself that this is not even the same category as food and heat. . . . . It is higher up the ladder of requirements. . . . . You put B12 first . . . . . . Not being treated for B12D PA can and does lead to long term harm which much of if not must are not reversable so you are not going to be cured. . . . . . You are going to be treated. . . . . . The delays for most getting diagnosed will already have had them in harms way so ye should not be going a week longer without your B12. . . . . . . . Most people will SI once or twice per week so £1.50 to £2.50 per week. . . . . Ye kinda have to get into your head that this cannot be missed at any cost. . . . .
You have my full sympathy to receive such a glib and offensive response as 'loathe to indulge this' as if it's a 'nice to have' treatment.
I am sorry to say that you and many of us here including me are victim to medical ignorance and lack of training.
Our medical systems are not fit for purpose. It's a hard truth to face and bear I'm sorry to say it. But it's simply true - Doctors do not study nutritional health and have NO IDEA what lack of B12 does for the body.
The fact that you went to the GP in April and had to wait until in June to get full treatment says it all.
THE NHS DOES NOT WANT TO SERVE B12 DEFICIENCY PATIENTS BECAUSE IT COSTS SURGERIES TOO MUCH TO DEPLOY NURSES EVERY OTHER DAY
That, along with medical ignorance of the impact of B12, is simply why you've been treated like some sort of grovelling child asking for 'more please sir'.
It's as if we live in Victorian times.
I am so sorry. But you are also in Gloucestershire, which is notorious for poor treatment of B12.
The best thing you could do is learn to self inject and source DEPOT Hydroxocobalamin from Germany. And inject every other day, rotating sites between arms and legs, until all your symptoms are resolved.
You at least have a diagnosis so should also get NHS jabs.
It is from the British Medical Journal, so I am sure the average GP will regard it as important and totally valid. A very brief summary is:
measurements of serum B12, methylmalonic acid, etc. give no useful information; the clinical picture is the only thing that matters; titration of injection frequency based on biomarker assessment is neither helpful nor indicated; an individualised treatment plan tailored to help the patient become or remain symptom-free will mean a dose and frequency that will vary between individuals from twice weekly to once every two to three months; self-administration of intramuscular B12 injections can lead to greater patient satisfaction and better health outcomes.
And, on safety (quoting):
“Strong evidence, from decades of treating individuals with inborn errors of B12 metabolism, supports the safety of parenteral, lifelong, even high dose hydroxocobalamin, sometimes even at very high doses. Long term epidemiological studies also indicate that treatment with pharmacological B12 doses and the corresponding increase in serum B12 do not increase mortality.”
If you think your GP will not read the whole article, then give him/her a print of the summary and safety stuff above. Well ..... give him/her a copy of the summary and safety stuff anyway (as well as the entire article). Nothing like blasting them with easy to understand information.
I self inject every two weeks. It is easy! Been doing it for 35 years. Recently my GP suggested (politely and not pushing to make a change, just enquiring of me) that every two weeks was a bit much - though his practice has been prescribing it for the past 30 years. So I gave him a copy of the article. He continues to prescribe hydroxocobalamin to self inject every two weeks - or even more frequently!
Look again at what Prof Wolffenbuttel and his other authors say about safety. "Strong evidence, from decades of treating individuals with inborn errors of B12 metabolism, supports the safety of parenteral, lifelong, even high dose hydroxocobalamin, sometimes even at very high doses."
As far as I can tell, on the basis of being 85 years old and only slowly declining, high dose hydroxocobalamin will not do any harm. It will more than likely help dramatically. I am well aware that if I had not been having what many a GP thinks is an excessive dose of hydroxo, I would have been dead long ago.
And I like that article. It should be pinned up in every GP surgery.
But, finally, you will have to learn to self inject. It is easy and it makes life so much more comfortable. In my case, five minutes every two weeks. Easy!
gathered you were in my neck of the woods due to your online name. So Gloucestershire for starters has the worst treatment algorithm for B12 / Pa . However as others have said the New Nice guidelines are due out soon . So we will see. It is possible to get IM injections from your GP . You just gotta stay calm , dont let them rile you. State your case after joining the PAS online . Read as much as you can about it before you ask. I managed to get 8 weekly after two years of asking . I cried alot at my surgery and realised this was not helping . I cried because i felt so bad. So i picked myself up and decided to approach it in a different way. Knowledge is power my friend . I SI the rest if the time as 8 weekly is not enough for me . Get as much info as possible before. Justify why you need injections. Or if that’s too overwhelming set yourself up to SI with help from here and it sounds like this is in your family. A negative Intrinsic Factor result doesn’t mean you haven t got PA . Does your idiot GP know you have family members with B12 issues. Hang on in there . Lots of support on here .
As I interpret "The Many Faces of Cobalamin (vitamin B12) Deficiency", generations of physicians have been trained, incorrectly, that B12 deficiency is always accompanied by anemia. In reality, B12 deficiency patients generally fall into one of two categories: blood symptoms (anemia), and neurological symptoms. Patients in these two categories have different symptoms, required different diagnostics, and require different treatments. Doctors are generally unaware of the two widely differing populations because, again, they have been trained that there is only one category (patients with anemia) and one treatment (loading doses, then injections every month, or two months, or three months). That is sufficient for patients with anemia, but is NOT sufficient for people with neurological symptoms (who comprise 80% of patients with B12 deficiency). That seems to be the crux of many problems with doctors. Add to that the list of things (in "The Many Faces of Cobalamin vitamin B12 Deficiency") that doctors often misunderstand or have wrong, and it a huge problem, a large part of the reason why so many patients with B12 deficiency with neurological symptoms purchase B12 from countries where it is sold over the counter, and self inject.
This is something I can't understand because the following text is an extract from one of the standard medical textbooks, "Harrison's Principles of Internal Medicine". It's not a bad summary at all so I wonder if doctors these days even bother to read a relevant chapter of standard medical textbooks on a subject before they attempt to diagnose it or dismiss a diagnosis.
"An important clinical problem is the non-anemic patient with neurologic or psychiatric abnormalities and a low or borderline serum cobalamin level. In such patients, it is necessary to try to establish whether there is significant cobalamin deficiency, for example, by careful examination of the blood film, tests for pernicious anemia (PA) by serum gastrin level and for antibodies to IF or parietal cells, along with serum methylmalonic acid (MMA) measurement if available. A trial of cobalamin therapy for at least 3 months will usually also be needed to determine whether the symptoms improve. The biochemical basis for cobalamin neuropathy remains obscure. Its occurrence in the absence of methylmalonic aciduria in TC II deficiency suggests that the neuropathy is related to the defect in homocysteine-methionine conversion. Accumulation of S-adenosylhomocysteine in the brain, resulting in inhibition of transmethylation reactions, has been suggested. Folate deficiency has been suggested to cause organic nervous disease, but this is uncertain, although methotrexate injected into the cerebrospinal fluid may cause brain or spinal cord damage. Psychiatric disturbance as discussed above is common in both folate and cobalamin deficiencies. This, like the neuropathy, has been attributed to a failure of the synthesis of SAM, which is needed in methylation of biogenic amines (e.g., dopamine) as well as that of proteins, phospholipids, and neurotransmitters in the brain (Fig. 95-1). Associations between lower serum folate or cobalamin levels and higher homocysteine levels and the development of decreased cognitive function and dementia in Alzheimer’s disease have been reported."
Here there is not as up-to-date knowledge as in Bruce Wolffenbuttel et al. "Many Faces" review article or his B12 article in the BMJ but it should surely be enough to cause doctors not to dismiss B12 deficiency when anemia is not present. It's really disappointing.
Agreed, disappointing, to the point of heartbreaking.
I wonder whether Bruce Wolffenbuttel might respond if you were to send the question to him.
Responding to the content, specifically "The biochemical basis for cobalamin neuropathy remains obscure." Maybe you might have insight into a question I have: nothing in the quoted passage above, or in other articles and other readings, refers to what I gathered was the main effect, or one of the main effects, of Cobalamin insufficiency/deficiency, and that is the inability of the body to make new cells with accurate copies of DNA. The inference seemed to be that cells without accurate copies of DNA do not know what to do, so to speak, eg, the poor-quality red blood cells behind the anemia sometimes resulting from Cobalamin insufficiency/deficiency. I know this is a simplistic interpretation, but is there any validity at all in this analogy? I guess my question is, what are some of the effects of the body producing new cells lacking accurate copies of DNA? Have you ever seen an example, or something similar? Maybe I am just way out to lunch with my assumptions.
There is a section, "biochemical basis of megaloblastic anemia" which refers to the issues with DNA synthesis:
"The common feature of all megaloblastic anemias is a defect in DNA synthesis that affects rapidly dividing cells in the bone marrow. All conditions that give rise to megaloblastic changes have in common a disparity in the rate of synthesis or availability of the four immediate precursors of DNA: the deoxyribonucleoside triphosphates (dNTPs)— dA(adenine)TP and dG(guanine)TP (purines), dT(thymine)TP, and dC(cytosine)TP (pyrimidines). In deficiencies of either folate or cobalamin, there is failure to convert deoxyuridine monophosphate (dUMP) to deoxythymidine monophosphate (dTMP), the precursor of dTTP (Fig. 95-1). This is the case because folate is needed as the coenzyme 5,10-methylene-THF polyglutamate for conversion of dUMP to dTMP; the availability of 5,10-methylene-THF is reduced in either cobalamin or folate deficiency. DNA replication from multiple origins along the chromosome is slower than normal during mitosis, and there is failure of joining up the incomplete replicons with resulting single stranded DNA breaks. An alternative theory for megaloblastic anemia in cobalamin or folate deficiency is misincorporation of uracil into DNA because of the accumulation of deoxyuridine triphosphate (dUTP) at the DNA replication fork as a consequence of the block in conversion of dUMP to dTMP."
Thank youall for your kindness, support and wisdom. I've copied your messages and chat comments into a document to work through - so much advice and useful contacts as well.
With a teenage daughter who has 'low' B12 (181 - but falling outside the adult reference range), anorexia and depression, I'm keen to figure this out for myself so I can support her too, as I fear she will face the same battles as me.
I really appreciate all your help and wish you well.
Just a quick update - still no further with my GP despite rapidly declining symptoms. I'm now in touch with the Cambridge Iron Clinic and hope to move forward with SI and take things into my own hands.
I did find a couple of articles which express the NHS/GPs derision around prescribing B12 - in particular the GPs comments at the end of each article.
It seems self-preservation is the only way forward sadly:
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Symptoms of B12 deficiency
Weird symptoms- B12 deficiency? 
Is it still B12 symptoms or something else? 
Why would Active B12 blood test not be recognised by GP when I have lots of symptoms?
B12 deficiency, so frustrating
