Hi my b12 levels were so low at 237 even with taking b12 tablets.. Drs keep telling me my levels are normal. I have memory loss, pins and needles in arms and legs which leads to numbness. Restless legs.. fatigue, when I was exercising I was getting worryingly breathless with chest pain and also suffer Palpatations. These are my main symptoms I've had a while. The Dr finally put me on b12 intense 2 wk course of 6 injections. My symptoms improved a lot but didn't go completley. I asked for more intense b12 until my symptoms went then go on a 3 monthly dosage. Drs said no nd can only give me 1 jab every 3 months. Because I contested this and asked for more she put phone down on me after a load of abuse and telling me she has a degree. Now I've been asked to leave the practice. I need b12. I have some form of gluten intolerance which again was wrongly diagnosed as CFS/ME I couldn't get out of bed at all. I'm nearly fully recovered from my own research. How can I get b12 injections and which type do I need. I've had enough of Drs now.. I can't live a normal.life because they seem to want to diagnose everyone with anxiety and depression tablets which I refuse to take as I know what's wrong with me. So draining and literally some destroying after battling with them for more than 4 years. Any help advice would be appreciated. Thanks.
B12 deficiency : Hi my b12 levels were... - Pernicious Anaemi...
B12 deficiency
Hi
It sounds rather unfair to me that this GP has asked you to leave the practice. Obviously, we don't know any other background to this but, on the face of it, I would suggest you make an appointment to see the Practice Manager, explain your situation and what happened over the phone and ask the manager for his/her response etc.
I would have thought you would need to be given 'notice' to find another practice and that they would continue with any regular prescriptions until you have a surgery to take you on.
Good luck
Thanks for your reply. I've spoken to the practice Manager she is just as ignorant as the Dr. Told me how I could overdose on b12 and that they could get struck off for giving me too much b12 even though I pointed out what it says on the nhs website to continue with b12 injections until the symptoms stop them continue with 2 monthly injections with neurological problems. I also saw a heamatologist today who said there was no reason they shouldn't keep me on treatment if it's working and confirmed you can't jave too much as it's harmless and a water soluble vitamin. Who knows what's wrong with these Drs? I'm fed up fighting with them. This practice Manager told me that is how it is at their practice and you jave to argue for treatment? Makes no sense to me. I wouldn't mind but it's cheaper to give b12 than it is depression tablets and all the unnecessary tests they sent me for.
Oh, my goodness. So, the Practice Manager is giving you incorrect facts too. That's just too much. What qualifications does she have, I wonder? Unfortunately, it seems doctors, including consultants, have no idea re B12 and how to recognise and treat deficiency.
I can't remember it's been suggested to you to join PAS (£20/pa) and speak with Martyn Hooper. He will give you some advice, probably to write to the practice initially. Certainly worth a try, especially if you don't have/want an alternative surgery.
Here is the link for the Pernicious Anaemia Society - pernicious-anaemia-society....
{{{Hugs}}} 
Thank you very much. Yes a lot has gone on.. They wrote lies in letters and even told my son's peadiatrician I was adamant he had Celiacs disease like me. Yet I'm not diagnosed with celiacs disease? And I've never suggested he has it as he hasn't shown any symptoms. I asked for Vit D as he complained of similar symptoms I had when I had that deficiency. The Drs don't seem to listen properly and make up their own account of events. Regarding my b12 I only asked for what the nhs uk website states I should get according to my sypmtoms and I wasn't nasty or aggressive. They don't seem to like anyone to question there opinion? But if I'm not getting better then of course I'm going to question them. Thank you I will look into the information you have suggestion. So glad I found this site. Can't believe how many people are struggling to get diagnosed and treatment.
The practice manager is quite wrong regarding overdosing and it takes much more than that for a doctor to be struck off. The sad saga at Gosford Memorial Hospital where numerous patients died from morphine overdosage clearly demonstrates that!
Follow the practice complaints procedure and if you're still not satisfied contact the Complaints Manager at the PCT. in the final analysis you also have recourse to the Ombudsman if all else has failed..
I am still weaving my way so probably not much help. I am in the US, but here is what protocol I am on. I was diagnosed at 180 and was initially started with monthly injections. I tried to let them know how smart I was and that that wasn't enough. Long story short, they agreed to 2 a week, and now I am self injecting as needed. With neurological symptoms, my research has told me that injections are needed every other day until there is no improvement. This is exactly what I am doing now. The past few days is the best I have felt in a year. I am by no means recovered, but I feel I can function at least. Keep fighting and find a new doctor if you must. No one knows how you feel better than you do. I do not understand the stigma with giving more injections if they are needed - but it is like that here too. I have asked a pharmacist, a neurologist at the Mayo Clinic who diagnosed me and both of them told me there is nothing wrong with repeated injections and that the repair at a cellular level will take anywhere from 6 months upwards. I am almost 5 months since my diagnosis - slow but sure I feel I am getting my life back.
I am so sorry to read about your abusive doctor and that you have been told to leave the practice. I hope you manage to register with another one soon.
Is it possible for you to get your Folate level checked Lorilee60 ?
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I'm not a medically trained person but perhaps a chat with your pharmacist would be a good idea as folic acid is cheap and readily available over the counter.
Yeah I'm still fighting. The heamatologist I saw today didn't know much either and told me that tablets are better, which is not true. I had significant improvement with the injections. It's so frustrating to start to feel better then have them stop treatment for no reason at all. They told me I don't have PA but they also say my b12 results are normal at 237. So glad you are feeling better. What do you use to self inject If you don't mind me asking? I am now considering this option as can't continue to deteriorate the way I am again. It's been 3 months since my last injections and symptoms are progressively getting worse again.
I am interested that even with injections they have told you it will take several months for repair at the cellular level. This sounds very likely to be true and I find it personally very reassuring as I am definitely not feeling much better having been on oral replacement for a couple of weeks. Patience was never my strong suit!
Hope you feel better soon.
Hi,
I've assumed you're in UK.
So sorry to hear about your unpleasant experiences..it brought back memories of some of mine. Pressure was put on me to leave one practice.
I stuck with them for years because I thought I was the problem, it was only after I left and had a kinder GP that I realised that I wasn't.
Removal of patients from GP list
bma.org.uk/advice/employmen...
nhs.uk/chq/Pages/2556.aspx?...
Your local MP may be interested in hearing about your experience.
parliament.uk/mps-lords-and...
"They told me I don't have PA"
Have they explained why they think you don't have PA? Did you have an Intrinsic Factor Antibody (IFA) test?
IFA test can help to diagnose PA but IFA test is not always reliable and it is still possible to have PA even if IFA result is negative (called Antibody Negative PA).
Access to medical records
Might be worth getting copies of your medical records to see what has been written in past. A person who feels something is wrong in their records can insist on factual inaccuracies being changed but not medical opinion ....but can ask for a note to be inserted in records giving their view.
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
nhs.uk/chq/Pages/2635.aspx?...
pulsetoday.co.uk/news/polit...
ico.org.uk/for-organisation...
UK b12 info
1) BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin Guidelines outlines when PA (Pernicious Anaemia) can be diagnosed.
stichtingb12tekort.nl/weten...
2) BMJ b12 article
Emphasises the need to treat people who are symptomatic for b12 deficiency even if there is no clear deficiency in blood test results.
There's a lot of B12 info in the pinned posts on this forum.
UK B12 treatment
1) BNF British National Formulary Chapter 9 Section 1.2
bnf.nice.org.uk/drug/hydrox...
cks.nice.org.uk/anaemia-b12...
2) UK B12 treatment info is also in BSH Cobalamin and Folate Guidelines, about a quarter through document.
b-s-h.org.uk/guidelines/gui...
In UK, people with b12 deficiency with neuro symptoms are supposed to get more intensive treatment..a loading injection every other day for as long as symptoms continue to get better then an injection every 2 months.
Neurological Symptoms
"memory loss, pins and needles in arms and legs which leads to numbness. Restless legs."
These symptoms you mention above would normally be considered to be neurological. Do you have any other neuro symptoms? See lists below.
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Risk factors for PA and B12 deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.
PAS (Pernicious Anaemia Society)
If you suspect PA is a possibility , may be worth joining PAS. They can support and sometimes intervene on behalf of PAS members who are struggling to get correct treatment. They are a source of useful info on PA.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone available
PAS members can access details of PAS support groups which can be a source of info on helpful GPs etc.
pernicious-anaemia-society....
PAS may be interested in hearing about a haematologist who thinks oral treatment is better than injections.
Articles/blog posts about oral B12 treatment
pernicious-anaemia-society....
martynhooper.com/2016/08/02...
B12 blogs
Martyn Hooper's blog about PA and B12 issues may have relevant stories for you.
There is also an interesting B12 blog on "B12 deficiency Info" website.
"Told me how I could overdose on b12 and that they could get struck off for giving me too much b12 "
Perhaps the article below may be of use as it mentions the safety of high dose B12 treatment.
stichtingb12tekort.nl/weten...
Unhappy with treatment (UK info)
Link about writing letters to GPs about B12 deficiency
Point 1 is about undertreatment of neuro symptoms.
Point 5 is about being symptomatic with an in range b12 result
b12deficiency.info/b12-writ...
CAB
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and treatment.
I am not medically trained just someone who has struggled to get a diagnosis.
Wow! Thank you so much for all your information. Yes I am in the UK. I currently struggle to retain some new information (one of my symptoms) and these referrals and links are just what I need. I will work my way through and let you know how I get on. Thanks for sharing with me and taking the time to respond.
You need to take shots after the first few months at least once a month, for the rest of your life. You probably have no intrensic factor and cannot absorb B12 by way of digestive system. Complete healing can take up to a year, but you need to keep the B12 coming. If you don't want it in shot form, use sublingual in at least a 5000 strength to take daily under the tongue for at least a minute. Good luck, I've been where you are and it can get a lot worse if you don't take care of it. Even death. I had no detectable B12 by the time they tested for it. It is not the run of the mil test. Healing is slow and you can see slow improvement for at least a year, but stay on it.
I hate needles but i'm desperate for the injections SusanLMckinney
Whoops submitted that post too early lol. I want the injections as they work best for me. The Drs are refusing me the injections even though I have neurological symptoms. I'm looking to change Drs and when I'm feeling better with more energy, I will be taking my current GP surgery to task. I'm usually very meticulous and keep good records of things but my moods low and having mood swings again and can't be bothered to be as on the ball. I will get there one way or another. I've come this far, back in fulltime work from being bed ridden, no IBS symptoms anymore I was diagnosed with IBS at 21 im now 36. Had bowel trouble at 12 which put me in hospital. So its been ongoing yrs. Its only really took me out fully about 4/5yrs ago. Hard work but not being one to give up easily I've plodded on, on my better days and here I am. So close to being 100% recovered yet so far as need to find a go who knows about b12 or is at least prepared to listen. Going to join a new GP today. Wish me luck. Sorry to hear you have been through similar struggles.. being on here has given me the extra support and information I need to get me there. Feeling thankful for this page 🙏
Thanks for the timeline of a year. I will learn to be more patient with my treatment. I was beginning to doubt my own diagnosis as I wasn't improving! Patience required!
Hi,
Good luck with new GP.
Thanks I've signed up for my new surgery, just awaiting to see the nurse for basic blood pressure checks ect then I can see the GP. I did receive a letter from the hospital today from the heamatologist. He states that even though his training tells him I'm not b12 deficient as per their guidelines, he doesn't see why I can't have the injections if they help me, as they are harmless and excrete through urine and they are only guidelines, So they can deviate from them in certain circumstances. It really made my day, to know that even though he doesn't fully understand B12, he is willing to listen to me and take on board my view point, symptoms and how I say I feel from treatment! There's hope for us all yet 🙏🙌 I'm seeing the nurse a week on Monday so won't have any news until after that. Fingers crossed my new GP is also understanding and open minded to treatment.
Hopefully, the improvement in your symptoms 'should' be proof enough to any medical person but, unfortunately, we all know how most medical persons are 'blind' when it comes to B12 deficiency issues.
At least YOU know what your body needs in the way of treatment so at least you've got that to hang on to. I do hope your new GP is able to 'see' all this. Maybe you could write your findings re B12 injections / improvement of symptoms, in an easily read format, give to the nurse and ask her to pass on to the new GP you will see, and for it to be kept in your notes. It would then give the GP time to read it quietly before your appointment which may have a better effect
Good luck
J
"He states that even though his training tells him I'm not b12 deficient as per their guidelines"
The flowchart below from BSH Cobalamin and Folate Guidelines (published 2014 by British Society of Haematologists) makes it clear that if a person is symptomatic for B12 deficiency and shows a clinical response to B12 treatment (eg their symptoms improve) then they can be diagnosed with Pernicious Anaemia or Antibody Negative Pernicious Anaemia (if IFA test negative).
stichtingb12tekort.nl/weten...
Thanks for that I will show it to my new GP.. although I saw the nurse today and shes been so understanding. And realised I was on b12 yrs ago but the other GP took me off them for no known reason other than my levels were up. She's taken my bloods and if the b12 is in the lower range, she will do me a b12 prescription straight away, however, if they are high she said I will just need to see a GP explain what I have explained to her regarding my symptoms and treatment so far and he will be able to prescribe me some. Feel so relieved already. And my results will be back tomorrow so no long waiting periods. So happy right now. I'm overwhelmed with all the advice and support from everyone. Thank you all so much, it's been extremely helpful and reassuring I'm not in this alone. Thank you from the bottom of my heart.
Hi,
Have dietary reasons for low B12 been ruled out?
Vegetarians and vegans are in a risk group for B12 deficiency.
If you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy then dietary b12 deficiency is less likely and possibility of an absorption problem increases.
Might be worth writing down typical weekly diet in case GP assumes cause is dietary.
Coeliac disease
Have you ever had tests for Coeliac disease?
coeliac.org.uk/coeliac-dise...
Coeliac disease can lead to b12 deficiency in some cases as it can affect the gut and therefore absorption of some nutrients.
I am not medically trained just someone who has struggled to get a diagnosis.
Previous B12 treatment
"realised I was on b12 yrs ago but the other GP took me off them for no known reason other than my levels were up"
I think it's important to find out why you were on B12 injections years ago. Some causes of B12 deficiency require lifelong treatment eg Pernicious Anaemia.
If you were diagnosed with PA in past, then treatment is for life and a patient should not be taken off B12.
One way to find out why you were on B12 years ago is to get a set of your medical records, costs about £50. You can also ask to view your medical records which I think there is no charge for., this would normally be done with a staff member present.
The PAS (Pernicious Anaemia Society) has a leaflet called "Treatment is for lIfe" which PAS members can access. Costs about £20 a year for PAS membership, might be worth joining if you suspect PA is a possibility.
pernicious-anaemia-society....
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717
Injections stopped
There are stories on Martyn Hooper's blog about how PAS has helped people whose injections have been stopped.
martynhooper.com/2017/06/22...
martynhooper.com/2016/09/23...
martynhooper.com/2016/04/24...
The BSH Cobalamin and Folate Guidelines (link in post above) makes the point that testing B12 levels again after supplementation has started is irrelevant, there is also something in fbirder 's summary of B12 documents. Link to summary in third pinned post on this forum.
Access to Medical Records (UK info)
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
nhs.uk/chq/Pages/2635.aspx?...
Hi I was on b12 injections yrs ago with this same GP. Which is why I returned here. I have been tested for coeliacs disease but came back negative. However they diagnosed my other symptoms that caused me to be bedridden, with CFS/ME. I refused to be labelled with a secondary illness with no known cause or cure as I had already been previously diagnosed with IBS yrs previous. Eventually after much effort on my part as I was very Ill, felt like I was dying slowly, I cut gluten out of my diet as a trial. Suddenly my symptoms began to disperse and my health started to noticeably improve. Got myself back into full time work but still wasn't 100%. Thought it was just going to take time to repair damage that had been underlying for yrs. 2yrs in I still had symptoms, although very chronic fatigue had gone, IBS had gone, memory problems had improved. I started back to the gym, 3 month in muscles weakness had started to descend, very large bruising, big as a large orange, from slight knocks, pins and needles in arms and legs worsened, memory loss worsened, fatigue worsened, mood swings returned. Then I began to get chest pains and severe breathlessness during exercise, I had this yrs before but never got a diagnosis and had to stop exercise. So I looked it up and b12 came up. I was meant to be on b12 for life according to my original GP as my diet is very good and I'm not vegan or veggie. I have cut out gluten the past 2.5yrs with great success to my health. I had an intense course of b12 with my last GP but they refused to continue the intense course of injections until my symptoms had gone and went off my levels. Obviously my levels went higher with injections, but my symptoms were still there after 2 wks although they had improved. The nhs uk website says treatment should continue until symptoms improve completely, then go on 2 monthly injections for life with neurological symptoms. However GP wanted to put me on 3 monthly injections which was no good and I still had symptoms. That's where they refused more treatment and told me they had a degree and then I got a letter asking me to leave. Hence where I am now. Thankfully my original GP still listen. The only reason I ever left them is because after many tests they couldn't find what was wrong with me. I moved as I was told the other GP were very good with bloods. Turns out recommendations aren't always the best thing to follow. Get to find out today if I need to see the GP 1st or whether my levels are low enough for the nurse to prescribe me with b12. I have been taking b12 tablets in a desperate measure to try help my symptoms as it's been around 4 months since that intense course the other GP put me on and I'm deteriating. The tablets haven't helped at all, 4000iu a day, but may affect my blood serum results, which is why I may need a GP to sign off the prescription. That's how the nurse explained it to me, so fingers crossed that's what happens.
"I was meant to be on b12 for life according to my original GP "
Have you been able to find out if you were previously diagnosed with PA(pernicious Anaemia)?
I hope you get the treatment you need.
Thanks Sleepybunny
My new Dr is telling my levels are in 400's and are very high and that I should take other B vitamins. He said also B12 is linked to cancer. I can't argue my point very well as my brain was foggy. He gave me an injection today but told me to wait a month. I said it's not enough, I need to get rid of my symptoms before waiting for longer dosages. I've only had 4 injections in 3 wks and feel awful again. They just insinuate it's all in your head or you're depressed!!! So fed up as it's affecting my work. Told him I'm going to look into self injecting so he said come in 7.30am in a few days if im still feeling low and he'll give me another jab. I said no one is listening to me and until I get rid of my symptoms and gradually go on longer dosage after that I'll stay feeling ill. Hes given me a prescription for thiamin (a B vitamin he takes when he's feeling "low").
He also said there was no medical evidence of correlation between B12 / Iron / folate / homocystiene / MMA results ect.. I'm already feeling so much better after my injection this morning. It's ridiculous how Drs control and leave you helpless. My mum asked me if B12 is addictive?? 1st she says I'm depressed, now insinuating I'm an addict for wanting a water soluble vitamin injection that I need for my health. I feel like giving up! Surrounded by idiots! Sorry but totally exhausted with it all now.
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