I’ve had my very first b12 loading shot today (after various back&forth with my GP for many years). I’m 23 years old, and have been told that my b12 levels are at 147. In my area the nurse said it should be between 180-1000, so I’m definitely below that.
I’ve been advised that I should be having 6 shots over the course of 2 weeks (now 3 due to availability on the doctors surgery half) and have been told that I would need to wait 6 months after my initial loading shots to then be tested again/to see whether I can have the b12 shots every 3 months. I’m just wondering if I’m being fobbed off? Or is it normal to wait 6 months to then be re-tested again? I’m not sure if they’re doing this due to my levels not being low enough to be considered ‘b12 deficient’ or if they somehow think that it is likely that my body will retain the b12 after 6 months?
They haven’t been overly helpful with providing the information, and with so much on the internet I think I’m getting slightly overwhelmed with everything I’m reading!! Symptoms seems to be similar to other posts I’ve read on here, extreme tiredness, dead/lethargic legs, dizziness, breathlessness, headaches, sensitivity to light, and starting to be quite forgetful/slurring my words (which is super frustrating as I know what I want to say, it just doesn’t come out like that!)
Any advice would be super helpful! Thank you
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Tryingtofindhelp
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I did think 6 months sounded slightly weird! But had nothing to back myself up on or argue back at it.. especially since it was such a huge step forward for them to allow me to have the initial six.
Will most definitely have to do some further reading around it! Folate, and iron were apparently fine, but I haven’t requested the specific numbers of that as trusted them saying it was okay. I’ll be ringing up tomorrow so ask for a printed out list of all of my results! I’m not sure if they checked vitamin D, but assume that would have come under a full blood test..? Very unsure! They tested for anaemia and said I didn’t have that, would PA have to be tested for specifically?
Thank you so much for the help/advice! Honestly is hugely hugely appreciated.
Vitamin d normally has to be added to blood form. I had parietal cell antibody test. Some have intrinsic factor antibody test for PA. Both have flaws. I also had celiac tested. I tested negative and didnot have megoblastic anaemia. Severe b12 deficiency though. Still on 2 weekly b12 injections. Repair takes time.
I hope they've tested already before injections started . Your blood rebsults form will say. Quote
Yes, eat all kinds of animal products. Not a vegetarian or anything like that, I would say I have a pretty healthy/balanced diet. However I would say after eating a lot of the time it makes me feel worse than what I did before! Very lethargic/tired after most meals, but not sure if that’s something directly related to this or not!
I had B12-141 (close to your test result) and confirmed Megoloblastic/Pernicious Anaemia with similar symptoms to you Tryingtofindhelp. B12-180 is low frustrating that it is considered normal. It’s CRUCIAL to your long term health that you are treated appropriately now. Get a copy of the official guidelines as suggested (sleepybunny) to show your GP. You have neurological symptoms so it should be loading doses ‘until the symptoms have gone’ and then a single maintenance shot every 1-3 months as you need to keep your symptoms from returning. As mentioned by Nackapan - and worth repeating here. Hope you get a copy of your blood test results for reference AND confirmation that you ‘do not’ have Megoloblastic Anaemia/Pernicious Anaemia. If you do the injections are for life. Eventually you may prefer to self inject. I opinion that you cut back on your physical activity particularly exercise that increases your symptoms until you are healthy again. Your body is telling you it’s not coping and it will get worse if you don’t take precautions now. I recommend the Pernicious Anaemia Society to you if you are not already aware of it. One way or another you are getting a lot of information that is overwhelming now but shortly it will all make sense to you. All the very best to you on your journey back to health.
suggest you go back to the GP and ask to be treated in accordance with NICE and BCSH guidance.
As you aren't vegetarian/vegan you have a B12 absorption problem. Unless the cause is treatable (eg SIBO) you will definitely be should be on injections for life - maintenance doses would be every 2-3 months according to the guidelines - 2 months if you have neurological symptoms. Retesting serum B12 isn't required, ie treatment shouldn't be based on serum B12 results post loading shots.
[In theory SIBO could be treated and then you wouldn't need any further treatment but that's rather simplified and it doesn't always work that way.]
I have heard loading shots and maintenance doses 6-12 months as treatment for vegans.
If your GP is basing treatment on a negative IFAB test then they need to be aware that this test is extremely insensitive, giving false negatives 40-60% of the time - so a negative is a long way from ruling out PA as the cause
"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 does not show updated BNF info.
"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Also plan to read " "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Copies of these books may be available from local library service.
If you have a PA diagnosis or suspect PA, worth joining and talking to PAS.
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Have you been tested for Coeliac disease?
If you were tested in past, did GP do both recommended tests eg tTG igA and Total IgA and were you told to eat plenty of gluten in more than one meal per day for several weeks before blood tested?
Like fbirder I wondered if you are in Gloucestershire.
Local Guidelines
Some areas of UK are using local guidelines on the treatment of B12 deficiency which have not been updated for many years. Worth tracking down local guidelines for your area of UK and comparing them with national guidelines eg BNF, BSH and NICE CKS.
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only allowed 6 monthly B12 injection
B12 supplements or B12 shots?
B12 every 6 months?
How many times should we wait for new B12 level testing after loading doses? 
