I am on self administer subcut b12 injections prescribed by GP.. This has worked well accept for the fact that I have to have very high frequency -daily- or I slide backwards with numbness and increased tremors etc. Ive been injecting for nearly two years like this. Recently even the daily started to loose efficacy so have resorted to splitting the vial in two to inject twice daily. Its early days but this seems to be working.
I clearly dont retain b12 even when injected. Does anyone have any infomation on this as I cant find any and I would like to understand why. Also is there anyone else out there having to do the same.
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No, but I did self-inject IM every other day for over 2 years before I felt confident enough to reduce this to every three days.
I still seem to be okay. Not perfect, not how I was and not symptom-free on any day.
Definitely improved though, with some symptoms less often, less severe, manageable or even rare now. What I still have every day, five years on, is burning tongue. diarrhoea, dizziness and still prone to shin numbness/pain/heat and stiff feet. I am still seeing an oral medicine consultant who has helped me get rid of angular cheilitis , otherwise have now exhausted all possibilities of getting any answer even through DNA. I believe the reason I need frequent injections to be connected to the diarrhoea - probably bacterial. Maybe the current PAS research will find an answer eventually ?
Nothing of real significance has been found. Osteoporosis of the spine due to low vitamin D, low ferritin and folate (took a couple of years to stabilise at good levels), some flattening of mucosa in duodenum and patchy gastric metaplasia - and originally B12 deficiency which became diagnosed as functional B12 deficiency on constantly raised MMA results. The 6th time MMA was tested (2019), it was finally within range !
I remember wishing I could have 1/2 injection every day instead of 1 every other day. How do you manage to split it without compromising second half ?
If I remember rightly, most of my improvement came in the last couple of months, so keep trying. I believe you were initially very, very ill. Again, I'm relying on my memory (still a bit of a gamble).
Aww thanks for your reply. Yes I was very ill so I know it takes time but it was the drop back that I noticed. What I do is draw up two lots from the same vial at the same time. I store one drawn up capped needle syringe set in the dark for later on.
The neurologist agreed to the alternate day long term b12 jabs. My GP amazed at the difference in me agreed to increase to daily...... I havent told her Ive split the vial into two lots now. I dont understand why I need this frequency seems mad! . I do know if I lower the frequency the symptoms restart and my tremors never quite gone increase hugely within 24hrs along with numbness in feet. Scary. The neurologist did say I have an orthostatic tremor which was diagnosed by brief observation no tests and he had heard others reporting that b12 jabs improve the tremor. Nothing is really known about orthostatic tremor -supposed to be rare but full of theory & no known definative cause established!
From what I can read no one has really scientifically established the frequency of b12 injections - its an assumption. Most research looks at absorption not the ability to retain it once injected......
Sorry to hear about the absorption problems you have and the consequences. Thats sooo tough. I had diarrohea too but it stopped on higher frequency injections. On B12d.org am pretty sure its listed as a symptom....just a thought.
I get all my vit D through supplements as I am unable to tolerate even english spring sunshine!! I keep the level at around 100 & take k2 to ensure calcium supplements goes to bones not organs.
Lovely to hear from you Nackapan. 😊😊 Glad youve got some injections on the nhs now too. Well done! Yes subcut does work so hope you are starting to feel the benifits?
I am ok but I noticed that symptoms were slipping back in despite daily b12 subcut jabs.....and halving the dose but doing it twice per day seems to be settling things. I agree I seem to need a very steady flow of the stuff!! Cant find any research on this........they seem to assume that onces its in the system it stays there but mine cant be!! New pharmacist in chemists actually queried the prescription -you need it that frequent said he? Yes said I. He was amazed. I cant be the only one surely!!!
Am just noseying through my books to see if theres anything in them. Nothing on pubmed or online.
I'm doing sc every 6th day at present and having an IM one at the surgery 6 weekly . I was trying to see if IM stayed in my system any longer as in theory it might? So far I dont find any difference apart from with IM it seems to hit my system quicker or more aggressively. (Only way I can describe it) on prescription the Gp has given me 2 weekly. I wasnt given any needles ect . I remember that happening to you. As I had them already I left it. Did ask for more ampoules on each prescription though as initially only got 5 for £9.15. I still have terrible light sensitivity so now getting darker earlier a bit grim . Still many symptoms and very restricted to what I can do. Improvements have happened though . Still waiting for my neuro Opthalmologist hospital appointment I thought /hoped I wouldve been seen before lockdown as referral in Dec. 2019. The pharmacist queries my prescription so I can imagine the reaction you get☺
Anyway really hope it is a blip for you and you can get back to where you were coping and doing well.
Yes I did have a problem with the needles and syringes. The practise nurses order them in from the hospital for me so they are not done on a script. Wow that was expensive for 5 ampoules. Hope you get better value now!!!
Am glad youve made some progress. Thats really good. At least you know now you are on the right track. Keep going......
I hope you get to see the neuro opthalmologist soon. Id ring the eye department and ask to speak to the opthalmologist secretary......cant harm to remind and you have waited a long time! I do know they were only seeing emergencies but they are back to seeing people now though limiting numbers. ( I work in a related field)
Tremor: doesn't seem that rare a symptom: two women who are in my local PAS group have tremors. I'll have to look up the orthostatic bit as I've never heard it called anything specific. Definitely can be a B12 thing, not sure what else it might be.
deniseinmilden , who also has to self inject quite frequently, might have a better take on why that might be. Otherwise, we'll just have to wait for the current PAS research to tell us.
Keep on trying, it took me a long time to get anywhere. Wondered if it was maybe something else.... but everything else has been tested for by now, at least twice !
Thanks Cherylclaire. Orthostatic is the rare bit. Simply put it is a specific type of tremor that occurs only when standing or when extending the muscles -eg arm stretched out straight infront of you. When at rest or sat no tremor. I cant stand still for very long so queues are an issue but am fine walking.
Before I did B12 injections it was in my face so I couldnt smile as my lips quivered or raise my eyebrows without quivering. Thankfully b12 kicked that into touch.
My daughter has POTs from undiagnosed b12 deficiency. She kept passing out and having 'episodes' (as called) look like fits. Other things have greatly improved from b12 injections but unfortunately she has to be in a wheelchair to get out safely .mustve visited every a and e in places she has been. The wheelchair I'd safer but doesnt stop episodes completely. Before shutdown she went to a long awaited theatre trip. On the pavement out of her chair . Lots of help as crowded. She came round on that occasion quite well and begged the para medics not to take 'her in ' as she didnt want to miss the second half!! Strong spirit
She can walk but
has to keep going. As you say cant stand on the spot even doing calf exercises and leg exercises to try and stop her blood pooling to her feet. Swimming is her safest form of exercise. On the Orthostatic forum (pots) most are on b12 injections and were miss diagnosed in their time with fibromyalgia!! Btw urge incontinence was also a symptom but thankfully transient. Digestive issues still a big problem linked with POTs Why we do not hear about all of this I do not know. I wonder if 'the medics' looked at all of theses forums alot of the jigsaw s would be put together. Real people with Real symptoms . I'm apparently still a mystery . So many are. They sometimes think side effects from drugs but if you are not on the many drugs offered that is not the case.
Thanks Nackapan. Interesting that lots are on b12. The American forum reported that many said it didnt help but a lot were taking supplements in tablet form or far less frequent jabs...... Well it does me but not when given standard frequency of jabs. I think theres so much ignorance still in the medical world around b12 deficiency. Am pretty sure my B12 is autoimmune as I have vitiligo which is linked. My neurologist wants to research it but doubt he will have got funding due to covid19. He was surprised at the high frequency. He has closed my case as he says he cant do anything for me. He just told me its progressive but wont kill me.
Your right the medics would find the forums an interesting read if they could open their minds.
The incontinence is definately linked. Mine had gone but has returned sonewhwhat so for me another indicator I need more! Good research project for someone out there!!!
Your poor daughter -that sounds awful. Ive not passed out at all and so far managed to avoid wheelchairs. I also dont feel dizzy when standing just my leg tremor gets worse and worse and to counter that I have to move on the spot or sit down. Im having an extension built -future proofing -& to save money plannned to do the decorating myself. Not so sure I will be able to stand on the steps to roller the walls or do the edges! Frustrating!
Beware of a fibromyalgia diagnosis as investigations can stop. A high % went on to b12 deficiency or actually had a test and was found to be severely deficient already. POTs Heds thyroid problems to name a few. So many strong links . Seems it just depends on 'what presents ' first and then dictates what road you are sent down medically. In hindsight sadly i think with my daughter If b12 deficiency was found earlier (she had megobalatic anaemia) some of her problems could've been halted with aggressive b12 treatment . She had the 'standard' loading doses and 3 monthly I knew no different and was just pleased they found something to treat at last. Unlike America most on uk on the forums she uses they are on b12 injections as deficiencies found.
It may be for some the other way round that the POTs gives malnutrition with the inability to eat. Chicken and egg?? Alot have to be tube fed. A near miss for my daughter so then need b12 and other supplements. It wasnt that way round for her and many others.
All I do know now is regular testing must go on every surgery agenda to test for b12. Must go on blood forms. So at least even if the medics at that time do not treat The person has an informed choice to treat themselves or to question the decision of no b12 treatment. (Well for some as most wouldnt question the doctor) Crazy my first ever b12 blood test was at 57yrs old. No baseline of what level I was well at. It took to be in hospital for a very ill 27 yr old fir it to be tested for the first time!! Yet in some areas it is done ?? Money spent on brain scans before full bloods including b12 ....crazy.
It appears so so many people lives are wrecked by lack of a simple blood test to nip it in the bud. I truly believe our food is changing. Our earth is changing. There will be more not less cases.
I know PAs are working hard. As is Tracey on her campaign. The money just isnt there for reserch as no expensive drug involved . Perhaps someone out there would rather a be a Nobel prize winner again .
Am so so sorry for your daughter.....its Awful they didnt look more closely. I also didnt question the doctors for years not until I became really ill. I thought they knew what they were doing. Ive had tremors in my legs for nearly twenty years which slowly spread and increased through out my body.......though my tremors have improved dramatically on my high b12 frequency I know its highly unlikely they will ever fully resolve as too much damage. I have semi numb toes and soles. I suspect if Id had injections much earlier the damage could have been prevented.
The same issue kicks in over hypothyroidism.....which in my case is again strongly linked to vitiligo -the origin I believe of my health problems. Vitiligo is another condition they dont really understand though in recent years more research has been done.
So like you am a true sceptic where medics are concerned. Unoess you manage to source a boffin.....
Yes it took a general doctor to get interested with my daughter in A and E . Same doctor got involved when she was admitted to a cardiac ward. Wecasked for him and he kindly came from another department to see her. The table tilt test was performed. I then after advice from a friend got a referral to The National in London. They got her in for a week of testing . Addenbrookes had ruled our Addisons and lupus. Bristol ruled out rheumatoid arthritis. All investigations and referrals started at 9 yrs of age. I could do a review of at least 9 a and es some taken to by ambulance several times even though 'the episode's over. A battle on with her present surgery over increasing b12 . Niw booked but at 10 weeks rather than the 8 weeks requested by gastro!!
I used to have alot if confidence but I fail to understand the lack of networking amongst separate specialists with 'difficult cases. Costs more to the patient in the long run and more money too.!! Ar least she now has diagnosis s and The National are honest when they dont know. Supportive in measures she is doing fodmap ect.. Have been to court to try and overturn a decision on 0 points from a PIP assessment twice. She can only do limited work for money and not with consistent hours . So tutoring stopped as had to have time slots she could not always be available/well enough to teach online So like many conditions if they are nor recognised or understood like PA ect . It has devastating financial consequences too. With such a wide range of symptoms and whether caught in time and treated in time. Gave up with the injustice as making us all ill!
'Those that help themselves receive the least help'
Those that cant fight or access the system decline. Age UK were a good resource advocate buf have stopped all services apart from telephone advice.No good to s9 many older people who ate deaf!!
Right I'm off topic will stop. Lol.
Really hope you can go back to a daily b12 injection and it works the same soon. They not to stress as I believe it eats b12. On a lighter note my street should have excellent folate levels with all the allotment produce I've left on their doorsteps. It keeps me quietly occupied sorting it all . Good for vestibular pysio too. I spot like ballet dancers do before they do all those turns. ' my spotting is to bend to put it down and get up again. Lol safely.
(I dont grow it . It's my husbands allotment.) T c
That's really interesting, thanks for explanation.
I remember not being able to stand up, waiting at the bus stop, without holding onto the bus stop sign. I remember having to keep stopping when decorating the Christmas tree as arms felt leaden. This felt as if it was purely muscle weakness though, which is a fairly common B12 deficiency issue. Never had tremors- any shakiness was a feeling inside and not visible.
Your orthostatic tremor must make things difficult for you. Glad the facial tremors have gone. Your GP must be learning a great deal about the range of symptoms that can be attributed to B12 deficiency. You'd expect the neurologist to be a bit more interested too. Still, vital to have a supportive GP.
I think most people who need frequent injections buy supplies from abroad and self inject - so probably why chemist surprised. When I was being reloaded , I got 2 injections a week for six months- a couple of the nurses got quite jittery about that.
The Inherited Metabolic Diseases consultant I was seeing told me that they advise, in feedback reports to GPs, that rare patients found to have B12 problems at cell level be treated with 2 injections a week - and that some of these patients get refused this by their GPs !! Very frustrating for consultants, devastating for patients.
You'd think DNA evidence was proof enough for anyone, wouldn't you ?
As Nackapan said: research is the key. I'm hoping that the current PAS research will eventually put an end to this, so that the fact that "some need more" is not only recognised in all local surgeries- but can be tested for and treated from the start.
Interesting Cherylclaire. Thanks. I dont understand the relunctance to prescribe more frequently as you do excrete out whats not needed so you cant get toxic which seems to be their fear, not based on any scientific evidence!
Am finding splitting the vial between two injections per day works better than one. Clearly my body is clearing the b12 too quickly for it to last & clearly for some reason am not storing any hence the frequency? . There seems to be so little known about b12 injections and their effects. Everything I found was about the lack of b12. The dosage regime recommended by the nhs is not based on scientific evidence but dogma. I wonder how many there are doing extra injections to supplement their nhs protocol. I can understand it but the trouble is the doctors then think their protocol is working but its not as people are quietly doing extra injections.
The nhs neurologist I saw was interested in b12 injections and their effects on tremors as he had many patients tell him they feel better on them so he wanted to research. However even he was dubious about my frequency long term.......not sure what he would make of my injection regime now.......but it does seem to work! Time will tell!!!
Almost everyone within the medical profession seems mainly worried about too much B12, and almost everyone here seems mainly worried about too little.
Too much of our precious appointment time wasted on arguing our case for more/ trying to assuage medical professionals about frequency !
I have only once had a consultant tell me that I'm doing the right thing by self injecting every other day and that I must be persistent as it will take a long time to see improvements. He'd also read my GP's detailed notes, had them to hand and had clearly familiarised himself with the content. Answered questions she'd put to him, was complementary about her and thanked me (!) for bringing in symptoms charts. He knew I had B12 deficiency by looking at my tongue. No tests necessary.
He was an ENT specialist.
I was very honest with my GP from the start, and she sent me to all the right specialists at least once- anyone that might have been able to help me. She never gave up. She saw over time that I could only improve if getting frequent injections, and even then it was a slow process. We got nowhere further forward with consultants. I told her that I was self injecting the day after I started (didn't want to be dissuaded).
While she was on holiday, I saw another GP about heart arrhythmia, one who didn't know me - who then went to a practice meeting in her absence and had my NHS injections stopped. I got a letter from him stating that if I stopped self injecting, the NHS injections would be restarted at one every 2 months.
It would have been quite easy to lie at that point - but like you said, what would that have proved ?
How do we ever move on from this impasse ?
Although I don't have a PA diagnosis, all of my immediate family have autoimmune problems: two sisters with Grave's disease, mum and one sister with psoriasis.
Interestingly, mum also had vitiligo -which started and spread from an immunisation "booster" that she had -so many years ago, she couldn't remember what for. So again, likely to have been the earliest sign. Strong autoimmune response.
All my sisters' children have autism. Mum and two sisters had all of their amalgam fillings removed.
Whatever this might mean, it is not, any of it, disconnected.
Oh Cherylclaire the damage that doctors ignorance do! Thats shocking!! How on earth did that GP get awaye with doing that to you. Awful! Have your b12 jabs been reinstated?
Sorry to hear about the rest of your family but it sounds familiar. My family also have auoimmune conditions on my mums side, one of my sisters children & 3/4 of us siblings. Also a strong generational link with dementia on my mums side, all females which I do wonder if it could be b12 linked....but maybe not.
I think its wise to be as well informed as possible these days because we are all largely treated by computer programmes.....except for the odd free thinking doctor if you are lucky, most wont budge from the computers dictation no matter how obvious the need is.
Yes, I was furious at the time, because it felt like this GP who did not know me at all was making life-changing decisions behind my back, and was unravelling all the hard work that my usual GP had done.
I thought up so many replies to that letter, but in the end, did not bother to reply to him at all. Instead I saw my usual GP on her return and showed her the letter and discussed it with her.
He really has not changed anything for me: My usual GP is still supportive, I still self inject at a frequency that I need, I still have access to consultants, I still get folate, ferritin, vitamin D and thyroid checked to make sure I'm on track.
She has seen me at my worst - and at my best, and she knows what it took to get me there. One of the free-thinking ones, a rare gem- like that ENT consultant.
Yes, I'm lucky.
Family: there is a DNA story to be told - for you, me, Nackapan - one day hopefully.
I had my DNA checked for any obvious MMA problems, but nothing was found. That was Adult Inherited Metabolic Diseases consultants : lovely people, almost as disappointed as I was !
Hi. I have neuropathy in my feet and legs which is worsening. I first went to a GP about strange sensations in my feet (like giant plasters on the bottom of my feet back in 2001, but they just looked blankly at me). That was a temp GP as we were in the middle of moving. Nothing else till I was diagnosed with B12 deficiency (PA) 12 years ago after being sent to a neurologist. I realise now I should have had every other day injections until no further improvement but was not given them. Just loading and straight onto 3 monthly. Gradually I persuaded my now retired GP to up them to monthly, this was 5 years ago, but the neuropathy was still increasing. No-one seemed to care. I started self-injecting every 10 days in April 19. My new GP has now cut down my surgery jabs back to two monthly, I have increased my self-injecting to every other day so I am waiting to see if it helps. I have numb feet, burning feet, feet that seem to be cold not long after I get out of bed and like that all the time, I think because the feeling is going. I have swellings on my legs that when I touch them have weird sensations. Again dismissed by gps and consultants. I do have another neurology appointment coming up in the next couple of months but I don't hold out much hope. Every consultant I have every seen about anything dismisses me.
Am so sorry to hear this. You are right they should have been offering alternate day b12 jabs because of your neurological symptoms. The ignorance in the medical profession around B12 is mind blowing. Dont loose hope youve started on the alternate days you will have to give it time.
Yes, I do. FYI - I am not a doctor nor do I have medical training but have a lot of experience doing scientific research. From my personal experience and my research I can tell you this.
B12 (and many other vitamins) go through several chemical processes before your body can use them. Issues can occur in what I call "capture" as well as "preprocessing." Capture is how our bodies gets B12 to start with and this normally occurs in the small intestine. This is where Intrinsic Factor comes in. It's responsible for capturing the pre-processed B12. If you don't capture enough B12 bad things happen.
However, there are also things that can go wrong with the pre-processing, something that is definitely happening with me although I do not know the specific underlying cause. B12 (also called cobalamin) is converted into several forms of transcobalamin BEFORE it is usable by our bodies. If one of these pre-processing steps gets messed up it can cause what is termed a Functional B12 Deficiency.
For severe Functional B12 Deficiency, DAILY injections and/or transdermal B12 seem to be the only way to get enough B12 into the system. It turns out our bodies can absorb B12 (and other vitamins) outside of the intestine and flooding our bodies (transdermal or injection) with B12 is the only way to get enough usable B12 to support natural function. In this case the amount of B12 that can be captured from oral tablets is nowhere near enough to do more than generate moments of benefit that never stick. This occurs even if Intrinsic Factor is working like a champ.
Also, our bodies are designed to store usable B12 which is why even with PA B12 can eventually be spaced out by days, weeks or even a month (or more). This is not the case in the second scenario, which is why I can see negative effects in as little as 6 - 7 hours after B12 supplementation.
Folate can be intimately involved as well as other B vitamins. There is also a lot to do with mitochondria health and the methylation cycle that is heavily reliant on B12 and other B vitamins and some minerals.
I'm sure my explanation provided here is not that accurate but this is what I believe is going on. I will be seeing a new doctor in the near future, perhaps I will find someone who can actually help...
This is a difficult and challenging situation for those of us with either form of B12 deficiency and the medical field is only starting to wake up to these issues.
Thwnkyou that is really interesting and explains so much! Do you have any research evidence I can show my GP incase they ever query the frequency f my injections. I tested negative for intrinsic and after two years am now injecting twice daily (have been for 6 months) ......if I dont do this my numbness, tremors worsen and other symtpms return. Ive also had to go gluten free (5months into this) & I was wondering if therefore Id be able to reduce the frequency of injections and whether that was the original cause.....so far not the case. I notice within 12hrs if i don't inject this frequently. Cant tolerate any prolonger stress or I crash.
This link is info from a biologist researcher who has created a number of transdermal oils to help with B12 deficiency and methylation inefficiency. I use his Adenosyl/Methyl-B12 oil 4 (four) times a day. This is the equivalent of eight (8) cyan injections at 1000mcg per shot (typical). I use this oil in place of injections. Prior to using the oil I was self-injecting 1000mcg daily and I was NOT able to stabilize with that amount. It seems the amount each person needs can vary by great extremes.
To be clear, I am treating based on symptoms at this time, not on any type of tests. My real success started when I treated myself aggressively by supplementing every time any symptoms started - immediately! This helped me learn how frequently I needed to supplement. Once I got on 4 times a day (with the oil) I stabilized to a point where life is once again good and there is real hope.
I had a TERRIBLE time with PEM crashes during all this, which may be another thing you are experiencing. Simply being active (physically and/or mentally) somehow drains critical resources and then BOOM - a day or three later we crash into what is called Malaise. It is in simplest terms - slow, draining, death. At least that's how it feels. I am finding if I am proactive enough on B12 supplementation I can reduce PEM events AND when they do happen it's more of just a bad day then feeling like I'm dying.
I am currently experimenting with a transdermal patch puresciencesupplements.com/... in addition to the oil. I just put the first one on yesterday. There is definitely something in this patch I'm benefiting from as my vision is sharper and I am more alert. It adds another 5mg B12 into the mix for me along with all the other B vitamins.
Please be aware, because B12 deficiency can be caused by many things I have found many articles that focused one aspect as if that was the definitive truth. No way, B12 deficiency comes in MANY forms and it can be difficult to find the strategy that will help the most. It has taken me three months of trials and testing to reach the point where I actually feel reasonably good most of the time and I plan to keep digging into this because I strongly desire to understand it better.
Oh wow. Thank you so much! Yes I crash usually the next day or a couple of days later. It is sooooo frustrating as at the time of activity I feel fine. No one to date has been abel to explain why.
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