Hello All,
Browsing the internet (as you do!) and have come across two NHS-issued documents, stating those of us with neurological symptoms should be having 2- and not 3-monthly injections (and should be referred to a haematologist, apparently - personally I've never seen one after over 20 years of diagnosis - I wonder if anyone else in this group has via the NHS!! 🤨)
Nope. My neuro symptoms were put down to anything other than P.A. Menopause, stress, my age, diabetes etc etc. When I pressed for more frequent jabs, I was told that nobody needs or gets less than 3 montly jabs. I have never been referred to a haematologist either, or anybody else for that matter.
I gave up the fight with the NHS and now jab myself twice a week.
Really disgraceful - it seems it's a lottery depending on the attitude of individuals' GPs, coupled with ignorance about PA. I'm certain if we'd received the correct dose from diagnosis many of us could have avoided feeling the way we do. It's high time they were educated properly about the long-term effects of inadequate treatment 😡
I was referred to a neurologist .Never seen a haematologist.
Had a quiet sit in at my surgery when the nurse refused to inject me witb B12 .
Supposed to wait 3 months .
Booked it at 5 weeks as so I'll
A G.p put me back on every other day.
Then weekly then 2 weekly.
To date although opposed several times.
That is my NHS prescription.
Good for you, having a sit-in!! And it sounds as though your GP has woken up to the fact that 3-monthly isn't enough, even if the nurse wasn't being helpful. Hope things continue to improve for you 😊🙏
Yesxas per NICE guidelines
Yes, a GP colleague suggested I request referral to a haematologist, which I did. Referral was done and I was seen surprisingly quickly (i.e. within a few months of the referral). It's been a great experience with regular f/u and support and has really helped me get back on track. She is completely supportive of me injecting alternate days, although we do keep trying to reduce the frequency (because the injections are so painful). Currently managing 3/week and supposed to be trying to reduce to twice a week, but holding off on that because I've just had 2 rounds of surgery in the last 3 weeks!
She feels that PA should be easily manageable in primary care and doesn't understand why it isn't. I don't think she has a clear picture of how big the problem is though, because they only see a couple of patients per haematologist who need to inject alternate days. Largely through lack of understanding in primary care, as we all know.
So good to hear that you've had a good experience with your referral and are finally receiving the support you need - and that your colleague was in the know! Hope you're feeling much better after your surgery - two lots in a fortnight sounds grim! I was originally referred to a neurologist (although that was because my eventual diagnosis was confirmed privately and I only saw him a couple of times - he requested a brain MRI and then just prescribed amitriptyline) but there has never been any suggestion of seeing a haematologist. I'm really irked that my symptoms have got so bad when I've just found out that I've been receiving 3-monthly injections for 22 years when it should have been every 2 - and even then it clearly isn't enough! I've seen a couple of medical articles recognising that people with PA are self-injecting - surely this would be a wake-up call for those in the profession to realise people are desperate. No-one sticks needles in themselves for fun! I'm sorry you're finding the injections so painful - for the most part I haven't found it too bad, although once or twice it's been quite unpleasant. I wonder if it depends on exactly where the needle enters the muscle. Are you injecting your outer thigh? Generally I'm not finding this as bad as when the nurse injects my arm. I did have one shot in my buttocks when I was in hospital and that was the least painful of all, but I've since discovered they no longer recommend this because of possible damage to the sciatic nerve.
Thanks very much for your reply and sending you all good wishes for a swift recovery 🙏
Do you use a really fine injection needle ? The finest I.M . needle that I have found on the Medical Equipment sites is a 26Gx 1inch needle on medisave . I tried sub -cutaneous injections which many members use and find excellent , But my efforts with sub-cut resulted in lumps forming under the skin . So back to I.M. No pain or blood .
I use an orange needle, but it's not the needle that hurts, it's the stuff I'm injecting! S/c also stings and I swear it's not as effective as IM for me.
I tend to alternate so I can use as many sites as possible.
Yes, the needle going in isn't the nasty bit! I use an orange needle - have only done the IM injections and always into my thigh. The more slowly you release the syringe, the less discomfort, I've found. I can't work out quite what I've done differently on the occasions it's been more uncomfortable, though! I hope you find the best and least painful method for you 🙏
Hi,
You might find these interesting as well...
"NICE CKS Anaemia - B12 and folate Deficiency" published a few years ago.
"BSH Cobalamin and Folate guidelines" published in 2014.
"NICE B12 Deficiency Guideline" published March 2024.
I have some reservations about the above document. I feel it puts too much emphasis on treating people with high dose oral B12 tablets.
From personal experience and from what I've read on this forum, I think some forum members find oral tablets ineffective.
I think there is increasing pressure on GP surgeries to reduce number of people on B12 injections.
It's worth digging online to find the local B12 deficiency guidelines used by your ICB in England or Health Board in Wales/Scotland.
There are some differences in the guidance between the two NICE documents.
I was never referred to a haematologist despite many neuro symptoms.
It is possible to see one privately in UK.
I didn't have a lot of luck with the specialists I saw...their understanding of B12 deficiency was limited.
I left detailed replies on this thread which you might find useful.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
I'm not medically trained.
Thanks so much for all this 🙂🙏- I'll check out the thread you mention. The more informed we are, the better, I think! All helps to build a case when approaching our GPs! It's very frustrating that doctors in primary care seem to be so ill-informed about PA and how it affects patients.
I haven't tried oral B12 but wonder, even in high doses, how effective it is if the body is unable to absorb it. I can imagine GPS would be under pressure with the strain the NHS is under, but when patients' health is deteriorating surely this is false economy? Self-injecting costs around £2 a jab - not particularly costly compared with some medications. Really annoying, too, that we're unable to source it in the UK!
I think I'm going to request a referral to a haematologist - it would be good to speak to someone who has a better understanding of the condition. From everything he said, the neurologist I saw (over 20 years ago) clearly knew the impact PA can have on people, but made no recommendation to my GP that I should receive more frequent injections. Frustrating! I'm not sure if the NHS guidelines have only changed in recent years and haven't filtered through to some GPs.
"I haven't tried oral B12 but wonder, even in high doses, how effective it is if the body is unable to absorb it."
About 1% (might be a bit more) of the B12 in a 1000mcg tablet passes into the blood from the gut by passive absorption.
Search online for "Cochrane review Oral B12" to find a review comparing IM (intramuscular) B12 injections with oral B12 and read the conclusions.
Raising B12 levels with oral supplements does not necessarily mean that symptoms will improve.
My symptoms only started to really improve after B12 injections started.
Some people find they need B12 injections far more than NHS treatment pattern allows.
"I think I'm going to request a referral to a haematologist"
It's worth a try but seeing a specialist does not not guarantee better treatment/understanding.
Misconceptions about a B12 deficiency (from Dutch B12 website)
stichtingb12tekort.nl/engli...
"personally I've never seen one after over 20 years of diagnosis"
Do you have proof of your diagnosis?
Some forum members with a PA diagnosis have had B12 injections stopped in past and when they have queried it they were told that there was no record of their PA diagnosis.
If you see a haematologist make sure you're well armed with info from relevant B12 documents/ PAS leaflets just in case you meet one whose knowledge is limited.
PAS leaflets
pernicious-anaemia-society....
PAS membership is separate to membership of this forum. There are three types.
pernicious-anaemia-society....
More info in thread at bottom of my other reply.
Thanks so much for all of this information 😊🙏I very much hope there's proof of my diagnosis in my medical notes 😬- I was eventually confirmed to have very low B12 and high IF antibodies almost 22 years ago after progressively worsening (mainly one-sided) neurological symptoms and extreme fatigue. I am slightly concerned now, after reading that some people haven't had good experiences with haematologists. My GP was dismissive the last time I told him about the weird symptoms in my left arm, leg and side of face (it can't possibly be caused by B12 deficiency if it's only one-sided, apparently...) - he clearly doesn't know much about it and it's a concern that if the haematologist isn't well informed, it could merely back up everything he believes! In the meantime, before approaching the GP, I'll gather as much info as possible and keep up the SI regime to try to manage the symptoms. Thanks again for all your advice, it's really helpful 🙏
my gps been a joke. One referred me to neurology. They then cancelled said appointment and didn’t tell me. Got sicker and now been waiting 8 months and nothing. No other referrals made.
I'm so sorry you're not getting the support you need. Maybe try arming yourself with print-outs of information and take them with you to the surgery. No-one should have to put up with that. I was supposed to see a neurologist last year and then they decided it wasn't necessary as the MRI I'd had done last March (after symptoms went into overdrive) showed only 'non-specific areas of white matter' which they didn't deem significant. I think we need to have keeled over completely before they'll sit up and take notice! 😡
Yes - I have my injections two monthly ! ! ! They didn't want to prescribe them but I were insistent 3 monthly was not keeping me stable. Then saying that niether did the two monthly injections.
I now self inject.
Yay - a result! I think being persistent is the only way to make them take notice. But yes, 2-monthly is still not enough - it's just getting them to recognise the fact!
I was lucky in that I had a very supportive GP who noted that the B12 injections given (6 loading, 3-monthly maintenance) were doing nothing to stop my decline. She retested my B12 and got my MMA tested too. My B12 was by then over 2000 ng/L as expected, but my MMA was raised. Because she had also tested for any renal problems, she was able to diagnose functional B12 deficiency, confirmed by the testing laboratory.
This meant that I was restarted on two injections a week (the nearest the nurses would get to EOD), and finally I started to improve. My GP was in constant contact with a "B12 expert" at a major hospital, according to one of the nurses, so was acting on observation and secondary care advice.
6 months later, I deteriorated again - and was sent to haematology. My GP had done all she could by then - improved and monitored my folate and ferritin etc.
It took months to actually get an appointment - but what a strange experience !
At the first meeting, all the questions went in one direction, so all the prep I'd done was for nothing. I was told that B12 was toxic, carcinogenic and highly addictive. I asked three times for any proof, medical research etc - complete change of subject and more questions ! The haematologist asked if she could have the copy of my symptoms that I'd been waiting to go through with her - for their records. She then promised that on the second appointment, I would be able to ask any questions I had of her. They took a lot of blood.
2nd appointment: I was given a locum haematologist. It seemed to me that there was a focus on my MMA - perhaps trying to find an alternative cause for it being raised. It was tested 4 times by them -and remained raised. This locum reported back to my GP that my B12 injections (by now at a "maintenance" level of 1 a month) should be reduced again and "certainly not exceed the guidelines of one injection every 2 months".
Since I already knew without a doubt that this frequency would force me into deterioration again, I started a self-injection regime of EOD - which is what I should have been started on originally. I told my GP the next day - that way, too late to talk me out of it ! To her credit, she was supportive. I was at this point still aiming to get back to my full-time job, and my sick leave period was up. Getting no income is a great motivator to stick a needle into your leg !
The good thing about being sent to haematology was that they referred me on, to have all the other tests. Neurology tested main nerves in arms, hands, legs and feet and gave me a brain MRI. A breath test series ruled out SIBO.
I was then sent to Adult Inherited Metabolic Diseases consultants to look at my DNA for causes for raised MMA. By this time, three years had passed since I'd had my first MMA test requested from primary care. I'd had frequent B12 injections from then on. So my 6th MMA test was finally into range, and nothing was found in my DNA to explain what had happened.
I still self inject frequently - back to the 2 per week that my GP requested. This mainly keeps my symptoms manageable. I cannot reduce further than this and now don't attempt to.
My folate and ferritin were monitored regularly - but now aren't. My vitamin D I get on prescription because I was found to have osteoporosis of the spine, now reduced to osteopenia.
All the scans, tests and appointments (primary and secondary) I had were from the NHS. The only private test I had was a full-panel thyroid test (not available on NHS) as two of my sisters and one niece have Grave's disease. Luckily I don't.
Thanks so much for your reply - incredible that the haematologist was so opposed to your more regular injections and a bit worrying - I'd like a referral but am a bit worried now it could be counter-productive, as I'm pretty sure my GP would side with the specialist 😬! It appears to be pot luck as to whether you get someone sympathetic (and well informed)! Can I ask which part of the country you've seen the haematologist in, please? I'm in the West Midlands. Having said that, I suppose there's no guarantee which consultant you will see wherever you live 🙄!
I haven't had a MMA test - maybe I need to request one. I too have osteopenia in my spine, confirmed by a dexa scan a few months ago (previously osteoporosis, but improved after taking high strength vitamin D, which I've been buying myself as a precaution after having a deficiency a few years ago - only found out recently since things have been uploaded onto my NHS app that the dexa scan I'd had several years ago confirmed osteoporosis but my GP hadn't actually told me, even though it was in my medical notes!!) Do you know if there's a link between B12 deficiency and degenerative changes in the spine and neck, please? I've got herniated discs throughout and am wondering now if there could be any connection. Feel like I'm completely going to the dogs!
My folate and ferritin look OK. My TSH fluctuates but has never been considered problematic enough by the GP to act upon - I know the borderline numbers in the US are different from those in the UK. I'm wondering whether to get a thyroid screen done privately to rule that out, as both of my (adult) daughters have hypothyroidism.
I'm continuing the EOD injections for the moment - was doing them daily for almost a fortnight. No improvement yet but I live in hope!
I think the locum haematologist was really telling my GP off by saying she'd given me a maintenance dose of 1 injection a month that didn't match the guidelines she'd read, so she told her to halve it. Fine, it wasn't helping anyway. It really was about time I self-injected by that point. I think my GP, having observed me throughout, understood why I would. I really needed my job back and wasn't in any fit state yet.
The first haematologist I saw, the one spouting horror stories she couldn't possibly back up ? I never saw her again. I hope my list of symptoms enlightened her; somewhat doubt it though.
The locum haematologist referred me on to other specialists, so at least must have been a bit concerned with my raised MMA. So it might be worth you having an MMA test just to see what it is doing.
I had osteoporosis of the spine, osteopenia of the neck and this has been reduced to osteopenia of both. I was given vitamin D and Risedronate at first - but I started getting jaw pain and stopped taking it. I had a rheumatologist in charge of Dexascans and treatment - and she changed my medication to Raloxifene, which hasn't given me any side effects.
Is this related to B12 deficiency ? It seems that vitamin D, along with folate and ferritin levels, can be a problem - but not sure why.
Thyroid can struggle too. If B12 deficiency is due to pernicious anaemia, being an autoimmune condition, others are more likely too - so in that case, it would not be so surprising to have to deal with Grave's, Hashimoto's, vitiligo or psoriasis as well. These autoimmune conditions are rife within my family to the point where one of my sisters has to have immunosuppressants - but I was always the lucky one, or so I thought. I have now had three negative IFab tests done and won't be having another. I believe that my GP was right when she diagnosed me early on as having functional B12 deficiency, even though the particular malfunction was not identified in DNA testing.
Certainly all of my health problems, big and small, were happening at the same time and difficult to find any obvious link: burning tongue, hair loss, numb outer shins, memory loss, mood-swings, yellow-grey face, infections and difficulty healing, lack of concentration and a need to be alone. All alien to me. Strangely, the angular cheilitis (split, sore, bleeding mouth, especially at the corners) was a semi-permanent condition for almost a decade before that.
Spine: if nerves have been affected and hands or feet have lost feeling, this can develop (if untreated with B12 injections) into SACD - sub-acute combined degeneration of the spine. This is not osteoporosis but demyelination where the protective sheath surrounding the nerve bundle in the spine starts to deteriorate. This would require early detection and a lot of frequent injections for the chance to heal properly. It doesn't always completely heal -possibly because undertreatment failed to correct nerve damage or because primary care did not identify the deficiency . Worth looking this up.
I once had foot-drop - where my right foot would not lift up, and I had to raise my knee much higher than usual in order to clear the back door cill. Kept tripping up. A strange but thankfully brief "Ronald MacDonald" episode. So I think heading toward more severe nerve damage. By then, I was having B12 injections - but quite a few people here talk of getting worse before better: "reversing out process".
This takes time and patience. Persistence. There are some medical professionals with a better understanding of B12 deficiency and more of a respect for the damage it can do, but they are few and far between. Like you said, no guarantees.
Better to look for a supportive doctor who believes you and will push for referrals on your behalf.
I am in London.
B12 Deficiency and Neurological Symptoms?
Neurological symptoms of deficiency
GP Stopped my 3 monthly B12 Injections
Weird symptoms- B12 deficiency? 
