Hi, I am a 20 year old nursing student. I am really looking for a bit of support in my diagnosis of PA. I've been receiving B12 injections for about a year now, I'm on 3 monthly injections, next appointment the 10th october.
I'm really just wanting to hear thoughts and opinions, for the past month or so I've been symptomatic again, the tiredness, the tinatus, insomnia, depression, swelling of the tongue etc. I was diagnosed with stress related IBS around 2 years ago but part of me thinks there might be more to it than that? I have a previous inflammatory condition of the eye which was treated with immunosuppressants which I am thankfully not on anymore. Currently I have been having strong abdominal pains as well as frequent UTIs/cystitis and I just get to the point of being exhausted.
As well as all of this I find it hard to focus, and feel lightheaded most of the time, feeling like I'm away to faint. I never have but it really, really is getting to the point of affecting my life.
Along with all of this I am wondering if anyone else has tried to get the doctors to allow them to self inject and their experiences? I already know how to draw up and administer injections and it would probably mean I receive injections on time if I were in control of doing it so I can do it at a time which suits me.
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Gigi98
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Hi Gigi98 with the neurological symptoms you describe you are "entitled" to have B12 injections every eight weeks according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
Probably your first step is to get your doctor to "allow" you injections at eight weeks instead of twelve and maybe even re-start you on loading doses until there is no further improvement per the above.
Many P.A. /B12 deficient patients suffer at the hands of their "one size fits all" doctors and resort to self injecting if they cannot persuade their G.Ps to increase the frequency and buy their supplies mainly from Germany.
There is no danger of "overdosing" with B12 as any excess is excreted via your urine.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Some UK library services will have copies of these books.
Neurological Symptoms
You mention tinnitus, which is usually considered to be a neurological symptom. Do you have other current neurological symptoms or did you have other neuro symptoms prior to PA diagnosis eg tingling, pins and needles, tremors, memory problems, balance issues plus any others?
Go see your doctor and tell him to give you 8-weekly injections, as recommended in the BNF.
Pernicious anaemia and other macrocytic anaemias with neurological involvement
By intramuscular injection
Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
I had no problems persuading my doctor to let me self-inject. First I got the nurse doing the loading doses to show me how to do it myself. Then she watched while I did it myself. Then I saw the doc and suggested it would save my time, the nurse's time and the NHS's money if I did my injections at home. At the same time I persuaded him to increase my jabs to every two weeks.
Your stress-relayed IBS could be caused by the lack of stomach acid caused by your atrophic gastritis (the root cause of PA). This achlorhydria can cause symptoms similar to IBS. I drink lime juice (about 35 ml) with each larger meal to counteract it. Others use apple cider vinegar or betaine.HCl capsules.
I can’t recall exactly but fairly early on. I had a very up and down first 2-3 months both physically and emotionally when I started the injections and then everything calmed down and most symptoms disappeared, including the stomach issues. I also take really good probiotics and prebiotic and try and cut our sugar. I don’t eat gluten. Hope that helps.
Thank you! I’m into my 6 week of injections. Some things getting better but stomach thing is really upsetting and hard to deal with. I get you on the emotional aspect as well. I’m trying to fight depression but waking up every day to this new life and new me is extremely hard.
Seriously, it took time for everything to settle for me. With hindsight, I was up and down like a yo-yo and then I realised one day that everything was improving. It is so worth it. I’ve tried reducing the frequency of my jabs but it all comes back if I do. Hang on in there and keep an eye on cofactors etc.
Thank you. I keep trying to remember it’s gonna take a while and not get discouraged. Can I ask you to clarify the cofactors? I keep reading that term on here. Is it just the B vitamins like folate?
I’m not medically trained but from various readings on here and other groups, it seems your folate level needs to be above half way through the range to help the B12 as they work together. Also at the start of injections my iron dropped suddenly, so I was prescribed some for a short while. All good now, as I think it’s just at the start as new cells are being made. I occasionally take a B complex to try and balance the B vitamins, but one of the B’s, the name of which I can’t recall, should only be taken for a short while. I also take magnesium glycinate as it helps with sleep etc but I’m not sure if it’s an actual co factor. Personally, I ensure I have a reasonable amount of potassium from my food, (especially at the start of injections) by eating bananas, broccoli etc and drinking coconut water. Hope that gives you food for thought. I found researching as much as possible and not exerting myself too much, the best way to go. I’ve never looked back, it’s the best thing I’ve ever done for my health.
There are a couple of things which pop out of your question about getting the doctors to allow you to self inject. Firstly as a nursing trainee then that should be a shoe-in, if you can do it to others then doing it to yourself will let you know how it feels when you do. But are you asking how you get the GP to let you inject more frequently that every 3 months, which you return of symptoms tends to suggest, that can be much more problematic as many of them just rely on the licence terms for hydroxocobalamin. There are plenty of us on this forum who have tried that and come up against the stone wall of the licence terms and the need for a neurologists opinion. What we have done is to give ourselves permission and bought the kit and the doses. As you have put in the last sentence you do know how to do it and you would then be able to do it at the time to suit you.
I'm a retired nurse and can well relate to what you have said. As already said, your GP will stick to his 'guidelines' of 3-monthly injections, in spite of NICE saying 2-monthly if neuro symptoms (re clivealive post above)
My GP was adamant I wasn't deficient, in spite of clear symptoms and bloods suggesting it and had previously told me, re feeling permanently exhausted etc, 'there's nothing more I can do for you', then proceded to reduce thyroxine!!! Great, eh?
I decided it is 'my' body so don't need his permission (B12 is considered safe and not toxic etc) so I began self-injecting, only told the GP once I was feeling so much better (so would be hard to deny B12 deficiency ) He was pleased, but amazed, at the improvement as he'd never seen me so well
I did try 6-week injections but soon 'crashed' and am now, after another loading series, doing well again on twice a week!!! 'One-size fits all' approach just does not crack it!!!
Just FYI, I tensed up doing IM so now do subcut, orange 5/8" needle into abdomen and seems good. I don't think there is much, if any, proven benefits S/c vs IM, to be honest but, hopefully, someone will correct me if I'm wrong.
Go for it, eh? Don't bother telling your GP then you can get 3-monthly on NHS and interval ones via self-injection You can get advice re what, and from where, to order from this site It's not expensive, I'm pleased to say
Hi Gigi98 i've just started to self inject when needed my doctor put me on one injection every 12 weeks which was ok for first few weeks then it starts all over again so i asked to get it more regular the answer was no so i decided to order B12 ampulets from Germany and the rest of the things i needed from medisave at a great price now everything is great
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As already said, your GP will stick to his 'guidelines' of 3-monthly injections, in spite of NICE saying 2-monthly if neuro symptoms (re clivealive post above)
Is it worth me getting supplements or just wait?
How long before B12 starts repairing damage? 
Help and advice needed please
Probiotics
