Started having B12 injections two yeas ago and worked fine. Now moved to a new village and the new GP ordered blood tests to see if I should continue. Fought back and said that without the injections my B12 levels are going down. He asked me to take vitamin pills and have another blood test. If levels stay the same, he will suggest to continue with the pills. My question is if the pills bring the same results as the injection, in the past pills didn't help me much and now I am worried I will be at the same position. Thank you for your replies, I am so glad I have found this community!
New GP is considering to give me B12 ... - Pernicious Anaemi...
New GP is considering to give me B12 pills instead of injections - would that be the same in the long run?
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AnnaVaso
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You need your B12 injections to continue.Once on injections leveks should be high and kept high.
Retesting is not needed as per BSH guidelines say.
Your Gp sounds clueless.
I once tried oral B12 under G.p instruction in the hope to reduce the frequency of b12 Injections.
It failed and I've never trued again.
However on my notes .
You've tried before and they didn't work.
If you've any sort of absorbtion problem you need Injections.
There is no medical paper that totally backs up oral b12 .
A neurologist I saw read every one available and wax totally unconvinced.
There is believed to be passive absorbtuon.
Some take 1000's and 1000s mg b12 to achieve getting enough b12 .
An injection straight into the blood stream is most effective .
Also point out once on injections your body usually can't go without and they are needed for life .
I haven't links but thete are many on here to print off or quote.
You know your body .
Why change anything if its working for you ????
Thank you so much for your reply, that's what I thought, if they work why to change? This is the second GP who is seeing me, the first one even said that B12 injections are placebo 😳😳
I’ve really nothing to add because you have had excellent responses . But I have also tried tablets and had no success . Trouble is that they do seem to work for some people. But you are now armed with information which will be useful when challenging your GP . I have a positive Intrinsic Factor Antibodies test , so 100% P.A.
In case you get totally brick-walled by your GP , and I really hope that you are not , you must know that more or less all forum members are obliged to self- inject, to keep well . You can get information on how to do that from this forum . Best wishes .
Absolute wicked rubbish for a GP to say that B12 injections are placebos .
Thank you so much, it feels so good to know that there are so many supporting people out there ❤️
Absolute wicked rubbish for a GP to say that B12 injections are placebos .
Totally!!!!
Yes , true ! But it’s that’s an example of what we have to put up with . I too was more or less told that I was an Hypochondriac! Thank goodness I found a private doctor who tested IFAB which came up positive .
Me too Wedgewood. I admire you for always being here to help and offering your time and effort to help others. When I'm sure it is very hard at times. Same with Sleepybunny and so many more. Technoid Nackapan Narwhal10 Jillymo and so many more. 🩷🩷🩷🩷
I had one tell me that the B12 injections were a placebo and that I might as well just be injected with saline. Luckily he was just a locum so I ignored him but terrifying to wonder what would happen if he was my permanent GP.
Avoid that first GP at all costs. Placebo indeed. How much more evidence is required for a wake-up ?
See Sleepybunny's post today with a link to a publication about a case study: a woman with severe eye problems - which was caused by B12 deficiency.
Hi AnnaVaso,
Please join the Pernicious Anaemia Society if you have not already to pass accurate information to your GP. Educate them and yourself on this disease.
Firstly retesting levels once treatment has commenced is pointless. As Nackapan has said and the source is the British Haematological Society.
I personally would put into writing that he has very poor understanding of PA/B12D because of his management.
Error 1 - testing current levels.
Error 2 - switching to cyanocobalamin oral tablets [ dosage ].
Error 3 - retesting levels after a certain period of time.
The blood results ONLY say what is happening in the blood. The blood test is highly inaccurate as they measure active and inactive B12 levels. Between 40 and 70 % is inactive. According to the PA Society, the NHS blood test has been discredited.
Gosh, obviously tell the second GP that there is also no such thing as scurvy, Leigh syndrome, Bassen–Kornzweig syndrome, kwashiorkor, iron deficiency either. So, more placebos are prescribed to treat these hideous diseases.
(Vitamin C deficiency, a type of vitamin B1 deficiency, a genetic disorder causing vitamin E deficiency, protein deficiency and obviously, iron deficiency respectively). Obviously, yet another person who does not think before they speak.
I do not understand people’s stupidity but I admire their total commitment to it.
Hopefully, someone will advise you with a plan to move forward. I am currently in sarcasm mode.
🐳
clivealiveForum Support
Do you know why you were put on B12 injections two years ago. What cause or diagnosis would be recorded in your notes?
Your "new" doctor should have access to your notes and it would not take long to look back a couple of years.
There are so many causes of a B12 deficiency, age, poor diet, Vegan/vegetarianism, autoimmune diseases, medications such as PPIs etc. etc and it is important to you both to know why you were prescribed the B12 in the first place.
I am not a medically trained person.
I wish you well.
Thank you for your reply, for many years I had low B12 and low iron. I have tried before vitamins/pills and they never seemed to work. My previous GP decided to put me on injections every three months and I was happy about that. My iron and B12 increased with the injections and I was very happy! Then, I moved to this new place and the first GP said the infections are placebo and I should retest my blood. We did and as the levels were lower than three months before, I asked to see a second GP who suggested to take pills and retest again in 2 months. If these doesn't work, he will put me back to injections. It is so frustrating that they don't all follow the same NHS directions and they like to cancel each others prescriptions!
So you never had an IFAB test for PA? Like everyone here has said there are a lot of reasons for B12 deficiency. If it's dietary and you don't have an absorption problem and it's just because you're vegan or vegetarian, then you can take tablets. If you have pernicious anemia because of medication or hereditary or Autoimmune then you have to take B12 for life as an injection.The problem with an IFAB test is that supplemental b12 can muddy the waters and give a false reading. If you are only taking tablets, then i would request an IFAB intrinsic factor test. I would not take any b12 pills for 30 days before the test. It could be hard to be off it so long but you need to have an accurate IFAB. Even 30 days may not be long enough.
They could also run an MMA and a homocysteine, those help to show an autoimmune condition exists and will help support other tests.
Don't let doctors confuse you. Come here and ask everyone what they think. This forum and this awesome family of B12D angels will help you.
Thank you so much for your response, you are all angels indeed! I will ask for a test. The first GP who thought the injections are placebo mentioned something about a negative anemia test that ingot already so not sure about that. I will discuss with the second GP and see what he thinks. He seemed more keen to help me.
You're very welcome. You do not have to be anemic to have PA/B12d. And there are other forms of anemia that drs often ignore, besides rbc's. There is macrocytic which i have with enlarged rbc's. And microcytic which is to small of rbc's. I have had that as well a mixture of large and small. Anemia causes a reduction of supplied oxygen to your cells as rbc's carry oxygen through your blood and into your cells and tissue. Without oxygen, it affects your lungs, brain, muscles and much more. You get very fatigued. I Googled " types of anemia" this is what it brought up. Some may not pertain to PA/B12d. You can research each of these.
Megaloblastic anemia
: Caused by a lack of vitamin B12 or folate
Pernicious anemia
: The most common cause of B12 deficiency, which is caused by autoimmune destruction of gastric parietal cells
Macrocytic anemia is a type of anemia where the average red blood cell volume is larger than normal. On a complete blood count (CBC), its MCV is over 100 fL.
Macrocytic anemia is generally caused by problems with the synthesis of blood cells, such as vitamin B12 or folic acid deficiency
Other causes include: Alcohol use, Medications, Autoimmune causes, Hypothyroidism, and Primary bone marrow disease.
Sideroblastic anemia: Bone marrow is unable to make enough healthy red blood cells
Thalassemia
: A blood disorder
caused by inherited
genes
Hemolytic anemia
: Red blood cells break down and die too rapidly
Aplastic anemia
: Stem cells in the bone marrow aren't able to make enough red blood cells
Correct EllaNore there are over 200 anaemias. How I checked when I was told over the phone that I was not ‘anaemic’ by a Health Professional so did not fit the criteria for colonoscopy. Absolute nutter, they meant Iron Deficiency Anaemia and guess what was on my repeat prescription ?
AnnaVaso has moved GP’s and it has messed her treatment up. It would be lovely to have consistency once in a while.
I would politely decline a b12 blood test. It is an unnecessary procedure recommended against by NICE if you have received b12 injections. The results are likely to be highish and an ignorant and/ or cruel GP can use the result to gas light you and commit medical malpractice.
You could always try tricking the man, accept his silly pills but not take them and then your results should be lower on blood tests but you really shouldnt have to put up with this nonsense. I would write a letter to the practice manager referencing NICE guidelines and ask when the GPs last has some relevent training because they seem woefully ignorant.
Hi,
I wonder if your GP has recently read the new NICE B12 deficiency guideline published on March 6th 2024.
I have some reservations about it as I think it puts too much emphasis on oral tablets.
Have a look at it when you have time and read the two page visual summary on first page.
Should be some useful info in detailed reply I left on this thread.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
"the new GP ordered blood tests "
Articles about testing b12 during treatment
pernicious-anaemia-society....
Next one is from Dutch B12 website
stichtingb12tekort.nl/engli...
PAS website has lots of useful articles.
pernicious-anaemia-society....
Have you considered joining PAS? You do not need a PA diagnosis to join.
pernicious-anaemia-society....
Note on oral treatment - B12 Institute (Netherlands)
b12-institute.nl/caution-no...
Informed Consent
My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the change.
As I understand it (I'm not a scientist or health professional), this means that the GP should have discussed the pros and cons of changing to oral treatment with you, made sure you understood the issues and got your agreement before they changed your treatment.
I'm assuming you have not given informed consent to the change to oral treatment previously.
If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter you write to GP or in any conversation that you have not given your informed consent for the change in treatment.
Of course, GP could say that changing from B12 injections to oral tablets is not a major change in treatment.
You could say politely that it is and maybe explain why in a letter to GP/practice manager.
Keep a copy of any letters/communication on this matter if appropriate to do so.
A paper trail is useful if there is a need for a formal complaint.
If the change to oral treatment is part of a study the GP surgery or ICB/Health Board for the area is taking part in, has this study got "ethical approval".
You might want to ask if you are part of a study and if you are, you might want to ask further questions about whether the study has "ethical approval" from an ethics committee.
Most studies involving patients need ethical approval.
BMJ article on ethical approval from 2009
I'd usually write a lot more but struggling with an arm injury.
More B12 info in pinned post "Various PA/B12D resources".
Many UK forum members turn to treating themselves when NHS is not enough.
I'm not medically trained.
You take care of your arm injury, Sleepybunny. AnnaVaso has the wealth of your knowledge.
Thank you SO very much for all your suggestions, you really give courage with your response. I will definitely read a lot before going to see him next time. I hope your arm feels better soon!
fight against orals!!! If you have malabsorption and autoimmune gastritis trying to get enough by oral route is hopeless . The tablets would need to be so high a dose and with only a dodgy unproven 1% absorption the 99% not taken up ends up in your colon and you’ll be at risk of bacterial overgrowth.
Once on b12 tests are irrelevant and skewed. There is no requirement for you to have injections stopped it be retested .
Fight fight fight and complain upwards if your treatment is changed against your will.
Or ask them to provide the ampoules and self inject.
"the first one even said that B12 injections are placebo"
I'm not sure your GP understands the concept of a medical placebo.
My understanding is that a placebo is a treatment that looks real but is designed to have no physical effect on patient.
If B12 injections have led to an improvement in physical symptoms such as patient no longer having ....
a sore inflamed tongue (glossitis)
pins and needles in limbs
limb jerks (periodic limb movements)
eyelid flickering
etc etc
then my understanding is that they cannot be a placebo.
Your GP is also indirectly saying that previous GP put you on a placebo which I think is negative towards previous GP.
Many of us have had similar experiences with ignorant health professionals.
Wrong ideas about B12 deficiency
Articles below discuss common wrong ideas that GPs, specialists and other health professionals may have about B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Blog post about being symptomatic for B12 deficiency with normal range serum B12 result.
b12info.com/your-serum-b12-...
Help for GP
Might be worth directing your GP to these.
1) PAS website has a page for health professionals.
pernicious-anaemia-society....
GP could join PAS as an affiliate member, no charge.
2) Has GP heard about Club B12?
This is a group of researchers and doctors looking into B12.
They have regular zoom meetings and have hosted a conference in UK.
3) Useful articles to show GP
i) B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Affiliations expand
PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
ii) Recent BMJ article by B. Wolffenbuttel
One of the few doctors (in my personal opinion) who understands B12 deficiency.
bmj.com/content/383/bmj-202...
Vitamin B12
BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)
Cite this as: BMJ 2023;383:e071725
iii) He also wrote a article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
You may have seen these links in one of my other replies but I'm putting them here in case they help someone.
Unhappy with Treatment (UK info)
Writing letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Thread about Patient Safety, has links that might be useful for those in UK having difficult health experiences with B12 deficiency.
healthunlocked.com/pasoc/po...
You might find this article interesting. It's a survey of people who self inject B12 in UK.
I could relate to their reasons for self injecting (SI).
Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey
Natasha Tyler, Alexander Hodkinson, Naeem Ahlam, Sally Giles, Andrew Zhou and Maria Panagioti
British Journal of General Practice 2022; 72 (725): e891-e898. DOI: doi.org/10.3399/BJGP.2021.0711
I don't know how to thank you, you have so much knowledge! I will definitely have a good chat with him and go prepared. I will ask about the other types of anemia as I don't think I have been tested for those. It is such a shame that they are the professionals and we the patients need to research and tell them how to do their jobs sometimes. Thank you again so much !
"we the patients need to research and tell them how to do their jobs sometimes"
Many of us including myself have to become their own medical detectives to find out what is wrong and how to get effective treatment.
I was left untreated for many years and had bad experiences, was gaslighted by some doctors and ignored by others. I have some mild PTSD symptoms over the way I was treated and spoken to.
It made me very angry and determined to prevent it from happening to others.
I've written many detailed replies on the forum which might be worth looking at.
"I will definitely have a good chat with him and go prepared"
Might be worth writing a letter to GP outlining concerns before next appt as gives them chance to do their own research, or maybe after appt if unhappy.
Being an assertive patient can change GP/patient relationship...some of them won't respond well to a patient who challenges and asks questions.
Apologies if you've seen these links before...
Useful B12 books
Published a few years ago so some bits may need updating.
What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US 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".
Copies of these books may be available from UK library services.
Films and videos about B12 deficiency and PA.
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
How to write letters to GP about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neurological symptoms present.
Vital to get adequate treatment for B12 deficiency. Delayed or inadequate treatment increases the risk of permanent neurological damage. In severe cases, the spinal cord may be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Some forum members have posted their experiences on this health review website.
Care Opinion
Stories can be posted anonymously. Sometimes GP surgeries and hospitals respond to the stories.
Put B12 deficiency in search box to show other people's B12 stories.
Thread about Patient Safety, has useful links for those in UK having difficult health experiences.
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