Out of interest, does anymore here who has B12 deficiency and pernicious anaemia, self adminster extra doses?
The reason I ask, is for a long time now, I have been having my jabs every three months. Previous to that, it was every two months, as according to my then endcronologist, it was to keep my levels stable. My GP has since thought otherwise!
I know some people, (as far as I know are not in this group) that adminster more jabs, but I do know, they do not have PA. I have considered it, but as I have a whole string of different conditions, I haven't for safety reasons. But I do suffer with the fatigue and the aches all the time.
Just interested in your thoughts?
For the record, I am not asking for medical advice, just asking out of curosity.
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JOLLYDOLLY
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I have Pernicious Anaemia , diagnosed with a positive Intrinsic Factor Antibodies test ( but as you must know , about 50% of Pernicious Anaemia patients get a negative test . The bog-standard, one -size - fits - all of one injection of b12 every 3 months , was not enough to keep my B12 deficiency symptoms at bay . No amount of pleading with my GP helped . “Too much B12 is toxic “ ( absolute nonsense of course) was the answer . But no answer to “ how much is too much ?” So I am forced to self inject to keep well .
If you feel you need extra B12 injections , don’t hesitate . You cannot overdose on b12 . That’s really great , because we all know that it is possible with many vitamins .
There is no advantage in injecting with B12 if not deficient . There are crazy claims made by beauty salons and clinics . Anti- ageing , weight loss etc etc . It annoys me because there is a shortage of b12 ampoules at the moment . P.A. patients really need their injections for life - there is no cure . It’s not called PERNICIOUS for nothing !
There is no need for you not to self-inject “ for safety reasons” if you feel the need .
I think you'll find possibly most of us here self inject and at frequencies you might be surprised by . . . . . . I cannot advise you to do so but I wish I had known 20 years earlier. . . . .
I am a bit concerned about an endocrinologist saying, It was to keep your levels stable. I may have misinterpreted this but another big myth about this disease is retesting levels once Hydroxycobalamin has commenced. This is from the British Haematological Society.
Many of us have other conditions which include autoimmune diseases. We can collect them. I noted your other posts and appreciate your other illnesses.
Lots of us cannot survive on 2 to 3 monthly injections so we do what we have to. It is not a choice, we want to be able to balance, walk, climb stairs and feel our feet. So, we do not injure them.
Unfortunately, Primary Care is underfunded. So, I could carry my paraphernalia on a plane, I went to my private GP and it really is a case of you get what you pay for. Whilst abroad, I purchased what I cannot absorb Over The Counter. Going through security at the foreign airport, they did not bat an eye lid.
Hydroxycobalamin/cyanocobalamin is water soluble so we excrete any excess out via the renal system and into urine. If you have excess you will produce bright yellow with a tinge green urine. I also take reasonable levels of B1 (thiamine) which is also water soluble. If you asked your GP or Endocrinologist, What are the pharmacokinetics and pharmacodynamics of Hydroxycobalamin ? They would not be able to answer. It is just a posh way of asking How is my body going to metabolise and excrete this ? They very wrongly believe that we store it in our liver.
It is seen on many Pathology reports: -
‘B12 > 2,000 mg/L does not need B12 for 2 years has enough stored in liver’.
I self-inject safely. Exactly how I was trained, right to left. My right side is the clean side and my left is ‘dirty’. Even doctors, nurses, midwives and physiotherapists get P.A. too.
Regarding keeping stable, it was because after having the loading doses, my blood counts were up and down and seemed to settle and level out at two monthly jabs and I felt great. A couple/few years went by and a nurse queried it, so as she would not accept what I was saying, got the GP involved who said, that my "blood levels" were high, so my body would cope with going to three monthly jabs - obviously I disagreed, but it did not get me anywhere. Obviously they know best - not, in my opinion. So this is where I am.
Please really consider joining the Pernicious Anaemia Society. This disease is NOT like Diabetes nor Thyroid Disease where in the former you test blood sugar levels and adjust medication.
It is a very common Error.
Doctors are not taught properly about the disease. It is symptom dependent. Blood levels are useless.
I liken it to epidurals. A woman tells me that she is starting to get sensations back, I do my checks and then administer.
It is a very different approach as lots of medications are and wedgewood has said what works for one does not for another. We are all completely different. Some people have to inject twice a day others it is every 10 weeks.
The dr's are wrong honey. I'm so sorry they have you on this Rollercoaster ride. I inject every day. Sometimes more. And still have issues. I would be crawling on the ground and babbling nonsense if i only had one jab every 3 months. I would not hesitate to up your injecting frequency. Everyone is different, so it helps to keep track of your symptoms in a diary. And inject accordingly. Good luck.
‘I self-inject safely. Exactly how I was trained, right to left. My right side is the clean side and my left is ‘dirty’. Even doctors, nurses, midwives and physiotherapists get P.A. too.’
Do not worry about it. It is just something I do naturally and very quickly.
An injection is a very minor invasive procedure. I often ended up in Operating Theatres scrubbed which are very different circumstances.
JOLLYDOLLY was asking who injects and was concerned about safety which reminded me of the study by Natasha Tyler et al (2022) Patient Safety, Self-injection and B12 Deficiency: a UK Cross-sectional Survey
I was a computer GEEK before I was a Clinician in the NHS. That Health Care System is completely chaotic and disorganised. How much stress have you had with pharmacists, nurses, GPs cancelling your B12 ?
A Systems Analyst will by-pass all that rubbish and not even entertain engaging with ‘them’ because it is a complete waste of energy. JOLLYDOLLY was asking about S.I. Hydroxycobalamin ‘for the Record.’ I am sure you are aware of some of the absolute nonsense written in your NHS notes. 😉
Yes I am aware of the nonsense. Especially when they say one thing to your face, then write something else on your notes and other "medical" people take the word of the notes as correct! - their get out clause to shame patients and protect themselves - recent experience with a near fatal asthma attack! (another story)
Yes thankfully. I was told I might have asthma, so was given one inhaler, which was as much use as a chocolate fireguard. Felt so unwell, and unbeknown to me, I was having regular attacks, which I thought were chest infections. Everything came to a head in October, rushed in with sepsis markers and was told I did have asthma and was on the wrong inhalers and due to something else, I come under the COPD catergory as well - ironically never smoked in my life (although ex passive smoker), so now on two inhalers both with steroids in them and some tablets to clear my chest. So a side effect from that, is that diabetes has kicked in again! Trying to conquer that now. However, overall it is nice to be able to walk a little further without being too out of breath. Thank you for your kindness.
NHS. . . . I too got told I had asthma and copd. . . . . Was given Brycnal and Clenil inhalers and carbocysteine. . . . . This was out of the blue. . . . . Yes I was coughing but it was out the blue. . . . . . Your a formed smoker and former mechanis nether are good for you. . . . . . Really felt like saying. . .and who fixes your car. . . . . Tail end of last year I attended Pulmanary in Castlebar , had all sorts but was put in a glass cabinet, , , . . . The results were such that they put me through the whole thing again. . . . . Man my chest was sore with two runs of that. . . . My lung function was 81% the first time and 79 the 2nd time. . . . . Conclusion. . . . We dont know who or how you were diagnosed with copd but we very much doubt such. . . . . We are alarmed at the amount of infections you are having though. . . . . The only thing they could come up with was post nasal drip something I had mentioned a couple times many years ago becasue I wake up and my throat is in a lump of crude but like much it got shot down and I didnt dare mention it again. . . . . It is clearing I feel. . . . I am treating my sinuses with spray and washing them as best I can plus using saline in a nebulliser at least twice per day and if I start to get mucky/congested I use Ambroxol inhalat in the nebuliser available in amazon.de . . . . where eles the readers will say haha . . . . I was told that if I could ever get a clear run of a few months my chest might clear up. . . . . I have another appointment for July 12th as they said it might take while to clear. . . . The ambroxol inhalat for me really is magic stuff so far. . . . . I did have pneumonia just beofre Xmas though and it was rough. . . . . . 2nd tme in my life. . . . . Someone just afetr that came up with this stuff ye dont get here . . . As usual all good things are not available here. . . . . Good reddens BMA and all yer notions roll on more EU notions . .
Vitamin defiencies can indirectly effect the chest .. . . . Our chest is really susceptible t having problems and quite often respiratory problems especially ongoing problems have an underlaying cause . . . . I was all through this with the chest consultant and her younger helper. . . . . . Was in from 12.30 to 6.30. . . . . Reall good service
Oh my goodness OldmanD, you have been through a lot as well. My inhalers are slightly different, but the medication is the same. This is the first month I have not had to take them and not had a cough. The pneumonia can be horrific I know. I am assuming you have had the pneumonia jab? I agree with the vitamin deficiencies. Wishing you all the best.
I got the pneumonia jab after moving down here, I was never offered it in NI. .. . .I'd like to get off some of this stuff also but time will tell.. . . . . . Glad you are off them.. . .. Brilliant. . . . . . I even get fed up with SI now and again and just skip it out but then it bites me on the ass. . . . . . Its not nice havig to rely on "stuff". . . . .
I know - I wrote down all my problems once - the diagnosed ones and I was so upset and horrified, I deleted it. I consider myself quite lucky compared with a lot of people I know, but it does get you down and if you miss a dose of something, it comes back to bite you! Take care and all the best.
Hi Narwhal Just read your comment ( I self-inject safely. Exactly how I was trained, right to left. My right side is the clean side and my left is ‘dirty’. ) and wasn't sure what you were meaning. Checking in case I am doing something wrong? Thank you x
Gosh no you are absolutely fine. It is just because I did a lot of operating theatre work (sterility stuff).
It is out there for anyone who is thinking of starting to S.I. and needs a private message with very easy step by step instructions. People do find the process rather nerve wracking.
In class, years ago, we were told do not touch the needles yet. Of course, a couple of us had already stabbed ourselves. Oops.
I self inject weekly, which means that I can lead a pretty normal life. On the NHS three monthly regime, I would be merely existing, unable to do the things that I love.
Thanks everyone! I get the tingling/burning in my feet, but unfortunately have come out of remission for diabetes (thanks respiratory steroids), so I guess that might be part of it too. My aches are normally in my upper arms and shoulders and upper body moreso than legs. The fatigue is unbearable sometimes.
It is great to know that others are self injecting too!
You ;ll get all the help you need on PAS and there are some great teachers on youtube. . . . Usually I hate youtube for health but not on this . . . . . I personally prefer amazon.de. . . . Top RH select the flag. . . . I know many here by their silence prefer the pharmacies but its the same pharmacies selling on amazon. . . . . Ye can see on the listings who are the sellers. Better delivery to Ireland anyhow and better protection as any amazon user will tell ye . . . . . Any problems, print the return label and its away back home and missing deliveries are quickly resent. . . . I sent stuff back that only had a 2 month time left on them. . . . Cant use 100 ampoules in 2 months. . . . .
I inject daily. Much needed. Have done so for 5 yes. No side effects except I am much improved. GPs don't understand that b12 is water soluble. Infact they are not even trained in vitamins anymore.....so won't have a clue!! Blood levels do not indicate levels at cellular levels.....so your GP is showing their ignorance. Every soften I test to see if I can go longer without dymptoms. I can't.
You might ask the question, "does anyone in this group NOT self-administer B12 in between the ones they have managed to get from their surgery?".....I was IF negative, so in theory don't have auto-immune PA. But I can't manage without injections. I buy online from Germany and SI hydroxocobalamin, subcutaneous. I get 7 weekly inj3ction at my surgery, and I was doing the self-injections 2 x a week for a long time. Hectic life and stresses and other things have made me a bit lax, so I have probably only done 1 every 2-3 weeks for the last 6 months-ish. I need to pull my socks up as I am suffering with fatigue, joint aches coming back in my pelvis and my hair is falling out a bit more again (some of my tell-tale first signals).
I will have to check with my GP. All I was told at the time of diagnosis that I have Pernicious anaemia and later antibodies. But nothing more was said since. I find it all confusing with the medical world and their diagnosis, because what one will say, another contradicts.
I meant that I get jabs 8 weekly at surgery - fat thumbs!If you have an actual diagnosis of PA due to positive IF test then you could really shove the NICE treatment guidelines under their noses- which states that if neurological symptoms are involved (yours certainly are), then B12 injections every other day until no further improvement in symptoms......
I mean, you won't get *that*, but you should certainly push to get them more frequently than 3 months, at least should move them to 8 weekly.
And if and when ye get jabs really pay attention to what they are doing and how they do it apart that is from the speed they push the plunger in. . . . . . . . The more you watch the more you'll realise that all this SI is far from rocket science. . . . . I would say all here will tell you that as you have had a diagnosis you will soon be on amazon getting the hardware and the ampoules somewhere cause the nhs simply has not the staff to fit you in as often as you are going to need B12 . . . . . .
You are very lucky to be getting an nhs script for B12. . . . . . I very much doubt ye avail of such in NI as they try to cut mirtazapine, quitiapine lansoprozol anything if they think folks are not taking all they are given. . . . . . Ye are liable to be answering more questions about your script than what might be wrong with ye and that is getting past the receptionists. . . . . A repeat script ye'll be asked about every single item and ye'll have to say yes to every single one no odds ye been taking the same crap fro 10 years. . . . . Sorry but the NHS really messed me up. . . . . .
Oh gosh that sounds awful. I had a lot of other things going on, but I did have the swollen cracked tongue, balance issues, breathlessness at the time and back ache. But all the conditions I have, have similar symptoms. When I was originally diagnosed many years ago, I had a lot of problems with my life line thyroid condition, so was only originally tested because of the similar symptoms with the fatigue etc. But they had finally put me back on my original dose of meds for that. My whole story over the last 30 plus years, is too long and boring, but I believe I could write a medical text book, how everything seems interlinked! (I laugh as I am typing this, otherwise I could cry). However, since my diagnosis, my late dad was diagnosed with B12 deficiency/PA a few months before he passed. My siblings have B12 issues, but not PA. My maternal Aunt has also just been diagnosed as well.
Injectable B12 can be bought over the counter in BC with no prescription. A family doctor taught my husband how to give me injections. I didn't bother getting any from my doctor except for the first ones. My husband just does it when I think I need it. I am currently doing one per week. If I wait 3 weeks, I start getting tingly toes again.
I never had an official PA diagnosis. My diet had lots of B12 in it. It was clear from my response to B12 that this is my problem. I went from sleeping 16 hours a day with digestive issues to being a happy energizer bunny. I initially did great with sublingual supplements. But then I got tingly/painful toes. My doctor suggested B12 injections. They cleared up the problem. It would be a good idea for you to get enough B12 to stop feeling tired all the time. B12 is very safe. Just get the first one in a medical setting to make sure you don't have a rare allergic reaction to something in it.
I find it makes a difference for me how I frame things. I frame it as I inject not extra jabs rather I inject enough to feel the best possible for me.
I at one time framed it as I Inject enough to eliminate symptoms. That I found to be 1 mg three times a day and 6 mg sublingual three times a day. At that dosage it took 6 months to eliminate symptoms.
It is wrong that I cannot hire a physician to prescribe the correct amount so that I do not have to self inject. It is wrong that I should suffer due to not being able to hire a physician that can treat effectivity. It is not wrong that I self inject/self treat successfully.
That is not to say I do not have emotions about self injecting. They are outweighed by my desire not to suffer.
I have 8 weekly injections from GP in the UK and then husband injects me in between, generally have one about every 3 weeks ish. Just ordered more b12 from Germany using Amazon.de pascoe brand. You can search on here for specifics on what to buy to get started and videos on you tube show you what to do. It took me a long time to pluck up the courage to self inject but I can actually function like a normal, useful adult most of the time so very happy I went for it.
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