I have been on B12 injections for 4 years. (I had exhaustion, nausea, headaches etc and B12 was confirmed as being 40.)Had.loading dose and been having 3 monthly injections ever since. Intrinsic Factor was negative, but I do not have a restrictive diet.
Anyway, GP decided to check my B12 when I asked for repeat prescription. B12 is 1700.... last injection mid March.
GP has decided that I no longer need injections and I need to 'vary my diet'.
Is this against NICE guidelines? I am furious!
shocking it was high because you are on injections.There is no need for any more blood tests.B12 should be given for the rest of your life.It makes me so cross.
The best result is that you make a written complaint by recorded delivery in reference to the doctors SUDDEN refusal to stop vitamin B12 without discussing the full facts of my case which was originally agreed as part of my health improvement effectively taking place. You can strongly object as vitamin B12 has resolved many uncomfortable situations.
Doctors seem to think that vitamin B12 is a waste of time and don't know the disruptive effects on the body by the removal of vitamin B12.
IF test isn't reliable so doesn't mean you don't have PA. Infuriating when a doctor just decides they can stop injections because your levels are now OK. Injections should be for life. Doctors don't really know much about PA/ b12 unfortunately
My GP have decided to refuse my repeat prescription for B12. I was self injecting at home, as they also wouldn't budge on the 12 weekly injections - at home, I'm doing weekly and just about coping.Last prescription for B12 was back in August last year. I'll just carry on doing things my way. As said above, GPs just don't understand the condition. While that's not good enough, I'm not going to let myself suffer.
GP did the same with me.I buy spray B12 now & use daily
I lost all faith in GPS a long time ago, I recently got a text asking me to go for blood tests, I phoned to let them know that I was house bound and could they get a nurse to call, to this I got a blanket NO. I was saved by a busy district nurse.
When the Covid jabs were being rolled out to us, I was housebound with a broken ankle. Could only leave the house with the aid of two ambulance staff and a 'big van'. I was 'invited' to attend for a dose of vaccine, and I explained to the surgery that much as I'd like to, I couldn't attend due to being housebound, and explained why. Could I arrange a home visit, I asked. Being 70s and housebound, it sounded like I was a good candidate. The nurse I spoke to thought I'd be eligible, and they did have folks going round to vaccinate the housebound. She put it on my record, and I waited, and waited, and waited. I rang the surgery once more, to enquire, and after a tortuous journey from person to person, I was told that I wasn't disabled enough, and should make my own arrangements. I had had numerous phone calls, asking me if 'I was refusing the vaccine', to which I said 'certainly not, I just can't get anyone to give me it'. Then the process rolled on and on, with no needle, no vaccine, until finally, I was out of the pot, and into a walking boot, and was taken to a large vaccination centre where I was treated with the utmost kindness by excellent people. I was able to go to the same place, walking, this time, for the second jab, and then was advised to get the first booster due to other health issues. The day after the booster, I woke to a swollen leg [no, the other one!] and ended up in hospital, being investigated for a DVT [negative] and it eventually subsided after a few months. Needless to say, no-one would agree that it just might be the vaccine, but the looks on their faces suggested that they knew exactly what it had been.
Have I had any more boosters? What do you think??? [No!] I do fully support the concept of vaccines, but after my experience, I decided to err on the side of caution. Had it been B12, at least I could have made my own arrangements.
I know how you feel about this. I was diagnosed with PA, rightly or wrongly, about 18 months ago and given the starter injections, and then 3 monthly injections. I had a heart attack in the Autumn, and have had two heart ops, the last in February. Last month the GP (having previously diagnosed as 'Parkinson's' and then ruled out by specialist) gave me more blood tests and has discontinued treatment.
My Serum is 587 and my folate is 20.0. Intrinsic F is not mentioned on the report.
Are these now OK? Please, someone who understands advise me. Should I seek a second opinion, or what? I am 78, with Diabetes and have been taking 60 mg of insulin and 2000 ofMetformin each day since 1999, together now with 13 other prescribed tablets.
Any help would be wonderful.
As you are on Metformin , you will only benefit from B12 injections . Every GP should know that Metformin depletes B12 .
thank you; that is helpful
Might be worth starting a new forum thread about GP stopping your injections.
PAS (Pernicious Anaemia Society) have a helpline for members.
PAS membership
pernicious-anaemia-society....
PAS Contact Details
pernicious-anaemia-society....
Some people have been supported by person who runs B12 Info.com (used to be B12 Deficiency Info).
There may be some useful info in my other replies on this thread.
wedgewood is right. The Metformin depletes b12. Read this
ncbi.nlm.nih.gov/pmc/articl...
Don't stop here, read the whole thing, but the table on page 1/2 lists all the myths. One of them being that you don't need injections because your serum level has normalized.
Once you start injections it takes months for your serum b12 to normalize because injections raise the levels and thus the tests are no longer accurate. Even if it was accurate, I had symptoms start at about 600-550. B12 injections are not toxic unless you have an already existing kidney or liver function issue AND if you didn't have those problems with kidney or liver before the injection, the injections will NOT cause any liver of kidney function issues based on the medical journals I have read.
I do Daily and sometimes twice a day injections. And have for 2 years. It has helped me so much.
You may need the injections for life. Worst case, get the supplies yourself and do self injections.
Thank you; that is very helpful
let me clarify, because I realize that some of my statements were not very concise.
once you start injections, you must stop for several months before you b12 level will normalize. This means you have to stop injections for months to get an accurate test. However, now the b12 just keeps depleting while halting injections. This is why most feel that attempting to test b12 is futile. Just keep injecting based on symptoms.
if serum b12 test is taken while actively taking injections, the b12 level will be inaccurate. It will show very high but that isn't what you are absorbing into the tissue. The level in the blood is skewed by the injections and thus inaccurate. there is no way to test what you are absorbing, thus the frequency of injections really depends on the symptoms, meaning, keep injecting until the symptoms go away. For me, it's been two years and I still need daily injections or some of the symptoms come back. Hope this helps.
Many thanks for clearing that up.
I was diagnosed with diabetes type 2 and went on a special diet that fixed it within a few months. I have my Hba1c checked annually and its still fine 8 years later. Just saying in case it hasn't been looked at for you.
Re yr current T2DM, ... sorry to find that this condition is poorly understood - conceptually & in practice - say the very credible-seeming, evidence based views in the ytube vid "The Bittersweet Truth" by Dr P Jamnadas ( - worth studying . . . meticulously, I suggest ! Hope you will, . . . & provide feedback too in due course ! You will understand why insulin administration is NOT the credible, evidence-based option for T2DM in the bigger picture ... & is the pathological cause of deterioration, as demonstrated by the BMI increase it results in ! Hmmm, . . . rather misconceived, misguided, ingrained practice ! However, please do consider your own case carefully before making changes: the views here are pointers to sources of medical views, and should not be taken as medical advice in any case, of course !).
. . . FORTUNATELY for us ALL, the more appropriate, far more scientifically sensible approach is detailed in the above, highly recommended video, ... & as cited therein, in the work of nephrologist, Dr Jason Fung: G🍒d luck Professor - with this info, your health can be put on a far BETTER track, . . . I feel ! 😊 ( - consideration cld be given to dropping those carbs, . . . & meal frequencies, in the manageable, sensible ways suggested, at yr own pace, . . . in order to begin to reclaim yr health ? ! !).
AtB,
Sid 😑
On this 'Coronation' Saturday 6 May 2023 - 🎭 🎭 🎭
------------------------------------------------------------------------------
LOOOOOVE THIS! Very accurate. I have been following Dr Fung for a long time. He is amazing and I love what he does.
I had T2DM in my early 20s, then it backed off to severe insulin resistance which made me very ill frequently. I went on the keto diet and it has helped tremendously.
Dr Stephen Phinney's videos are also a good resource for those interested in keto.
I had the same thing happen here in Spain. Doctors really have no idea about B12 and it’s frustrating.
I took things into my own hands now and I order online from Germany and self inject IM in thigh.
Self injection isn’t bad after the fear of the first one. You then realise you practically feel nothing. Best wishes
Thank you. Injecting is not an issue as I work in a hospital. My frustration is GP's going against NICE guidelines. I have made an appointment (earliest I can be seen is June!). Will be ready for a battle!
And what a battle it continues to be.
Sharpen your claws and have daggers drawn. 💅 🤺 How disgusting that you cant be seen until June. Make sure you stuff the guidelines under their ignorant noses and tell them they are putting your life at risk by stopping your injections due to an invalid blood test.
Rant over. 🤬
Ah yes, understand. It needs to be done until drs learn. I gave my dr the book Could it be B12, and she said the book was wrong! I just gave up.
I agree with your other responders, this is wrong and against the Guidelines. The level of ignorance is frightening. So sorry. I couldn’t get any more frequent than 10weekly, so I now self inject. Take care
I really should count myself as very fortunate that I managed to persuade my gp to agree to letting me have 8 weekly injections. Took me over a year of begging arguing then getting really stroppy. But got there in the end. He has also insisted on sending me for several hospital appointments to check the symptoms I've been complaining of. Must have cost a lot. Yet I've had no feedback or followup appointments to tell me the results of these tests. It didn't help that unbeknown to me on changing doctors the diagnosis of PA was missed off of my notes. So beware everybody and keep a copy of diagnosis.
So sorry - it just shouldn’t be like this. Take care🥰
More GP ignorance of our condition.
Hi,
Quick reply as I'm about to go out.
"GP decided to check my B12 "
Have a look at this article about testing b12 during treatment.
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
How to write letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates to base your own letters on.
Local B12 deficiency guidelines
Try to find the local b12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board. If you can't find them online or by searching forum posts then best bet is to submit a FOI request to ICB/Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
I hope you're not in Gloucestershire...read blog post below.
b12deficiency.info/gloucest...
There are other Uk areas with unhelpful B12 deficiency guidelines. Keep an eye on your local guidelines as they can change at short notice and are likely to change when new NICE guidelines for PA and B12 deficiency are published later this year.
"Is this against NICE guidelines"
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
If you have neuro symptoms, my understanding is that you should be getting the treatment pattern outlined in link below for those with "neurological involvement."
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in Nov 2023.
Link to draft NICE document PA and B12 deficiency
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment. If you have time, read the other project documents.
If PA is a possibility, worth joining PAS
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society.org
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
Intrinsic Factor was negative,"
GP should know (but some don't ) that it's possible to have Antibody Negative PA.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Should be something useful in these links below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
I post a lot of info so suggest you take at least a week to sift through it.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
I'm not medically trained, just someone who suffered from unrecognised and untreated B12 deficiency for years.
"and I need to 'vary my diet'."
If you haven't done it already, might be worth writing out a typical weekly diet to show GP....all food and all drink and highlight any B12 rich foods you are eating eg eggs, dairy, meat, fish, shellfish and foods/drinks fortified with B12.
It seems to me that your GP may have assumed that your B12 deficiency is linked to diet so I think you need to collect evidence that the B12 deficiency is due to other causes if you're sure it's not diet related.
Perhaps show to GP or include in a letter to GP, info about Antibody Negative PA. I think you need to prove to her (can be tricky) that it's possible to have PA even if Intrinsic Factor Antibody test result is negative. You could show her the diagnostic flowchart I mentioned.
Try to track down the local ICB B12 deficiency guidelines for your area (Health Boards in Wales/Scotland). Some of these local guidelines mention that a negative result in IFA test does not rule out PA.
Next link says
"Antibodies to IF are very specific for pernicious anaemia, however, they are present in only 50% to 70% of people with the condition."
cks.nice.org.uk/topics/anae...
Might be worth showing that to GP.
There are other tests that can help diagnose PA eg
Gastric Parietal Cell antibodies
pernicious-anaemia-society....
Gastrin test
labtestsonline.org.uk/tests...
Have you had those?
I've also read that a pepsinogen test may be helpful.
Coeliac disease
Were you tested?
NICE guidelines for Coeliac disease below suggest that anyone with unexplained B12, folate or iron deficiency should be tested.
If you were tested and got a negative result, did the GP follow the recommended diagnostic process....some don't.
A person with coeliac disease may get a negative result in tTG IgA test ( the usual test for coeliac) if
1) they have IgA deficiency
Did you have a total IgA test?
2) they were not eating enough gluten before the test
Did your GP tell you to eat plenty of gluten in more than one meal per day for at least 6 weeks before blood was tested?
More info about diagnosis on Coeliac UK website
coeliac.org.uk/information-...
Tested for H Pylori infection?
Can be associated with low B12.
patient.info/digestive-heal...
Any chance of internal parasites?
Have you eaten raw or uncooked fish or lived in an area where internal parasites are common?
One possible sign of internal parasites is an increase in eosinophils, a type of white blood cell.
Eosinophil results can be found with Full Blood Count results.
Medicines/Drugs
Has your GP looked at any medicines/drugs you are on? There are some that have been associated with low B12 in some studies eg metformin (a diabetes drug), PPI drugs used for suppressing stomach acid and others.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
I suspect your GP
1) may have some wrong ideas about B12 deficiency
2) may be under pressure from management or ICB or Health board to reduce number of people on B12 injections
Maybe you could pass on one of these articles.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
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...
Perhaps try to find out if your ICB or Health board is having a review of people on B12 injections. See links below.
NHS Lanarkshire Review of patients on IM B12, includes treatment algorithm
nhslguidelines.scot.nhs.uk/...
ruh.nhs.uk/For_Clinicians/d...
There are lots of posts on the forum about people having B12 injections stopped. If you search forum posts here with "B12 injections stopped" there will sadly be many threads.
Self treatment
Some UK forum members turn to self treatment when NHS treatment is not enough.
Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort try self injection.
If you're a PAS member, they have some helpful leaflets eg
"Treatment is for Life"
"Treatment changed- what can you do"
pernicious-anaemia-society....
PAS membership
pernicious-anaemia-society....
You do not need a confirmed diagnosis of PA to join PAS.
The same thing happened to me so now I have to self inject and buy the ampoules, syringes and wipes but it is worth it to me. I stated my case as I was diagnosed in 2019 and that GP said injections for life. The pandemic came and they would no do them anymore. When they restarted the injections at the surgery they wouldn't do it until everyone had a blood test .It's absolutely disgraceful the way you and lots of other people and myself have been treated
Pregnant and GP has stopped my B12 injections!
GP Stopped my 3 monthly B12 Injections
GP stopping my B12 injections. Replacing with oral B12
GP stopped my B12 injections after nearly 40 years
Anyone in the Fife area received a call from their GP stopping B12 injections.
