I’ve never posted on here before as I’ve been really lucky with my surgery and treatment of my B12.
However, on 05/01/24 I was informed that this would be my last injection, I would need a blood test to confirm if my injections were to be continued.
Quite open about the fact that everyone in the surgery having B12 injections were being told the same.
Looks like a cost saving exercise, wondering if it’s happening in all surgeries?
Welcome raye-12,
I do hope you are a member of the P.A. Society. I can see that you are U.K. based. There are many myths around the disease/condition. The British Haematological Society report that once treatment has commenced rechecking levels is effectively useless (or words to that effect).
From the repeated blood test another myth comes into play which is that we have 2 years worth of stores in the liver.
Our levels are high because we are currently having treatment but it is only a reading of what is happening in the blood not at cellular level.
You said it yourself, cost saving exercise. See if you can locate or dig around and see if you can find your Integrated Care Board or Trusts Annual Report and Accounts.
With regards to receiving adequate Hydroxycobalamin/Cyanocobalamin treatment, many of us do what we have to. 😉
I have a very large Excel spreadsheet of ALL my medical expenses.
Best wishes.
🐳
This happened at our surgery.Everyone got a letter who was receiving b12 injections. With a blood form.
Wrong at so many levels.
B12 levels will be high.
An IFAB test not definitive.
B12 tablets do not work if an absorbtion problem.
Once on b12 injections they shoujd continue for life unless caused by lack of b12 in the diet.
Or caused by a drug that csn be stopped
I refused the blood test .
Quoted their own guidelines.
Carried on getting my b12 prescription.
That sugery closed.
New one pharmacy issues of getting prescription. .
Should not be happening .
I Hooe you get it sorted .
Involve PAS
Yep, my surgery are doing the same. Thankfully I have a positive IFAB, so mine continue, although I get the 'just wait one moment' each time I book a jab, while they check my notes. Its so unfair, because we all know how accurate (not) the IFAB test is, leaving lots of people without treatment! ☹️
Hi,
Apologies for any abruptness as just got time for a quick reply.
What blood test are they referring to?
Do they mean serum B12 or possibly IFA (Intrinsic Factor Antibody) test which is a test for PA (Pernicious Anaemia)?
I think it would be helpful to find out which blood test they are referring to. Practice manager probably the one to contact.
If it's serum b12 .....
might be worth pointing out that testing serum B12 during treatment is not recommended in UK by NICE (National Institute of Health and Care Excellence).
See articles below.
PAS article on testing serum B12 during treatment
Has some useful quotes from UK health documents which you could point out to GP
pernicious-anaemia-society....
PAS also have a help sheet for PAS members who are facing being tested during treatment.
pernicious-anaemia-society....
You would need to be a PAS member (separate to forum membership) to access above leaflet.
pernicious-anaemia-society....
Next article on same subject comes from a Dutch B12 website.
stichtingb12tekort.nl/engli...
Other PAS leaflets that might be useful are
"Treatment changed - What can you do?"
"Helpsheet for Patient-GP Discussion"
Two above can only be accessed by PAS members.
If it's IFA (Intrinsic Factor Antibody) test for PA...
might be worth pointing out that a negative result in IFA test does not rule out PA.
This is discussed in UK document "NICE CKS Anaemia - B12 and folate deficiency" which I suggest you find online.
Flowchart below from a UK health document mentions Antibody Negative PA
stichtingb12tekort.nl/engli...
Reviews of patients on B12 injections
I wonder if your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland are having a review of all people on B12 injections?
Your ICB/Health board will probably have a medicines optimisation team behind this.
It could also just be a review purely for your GP surgery. Might be worth asking GP surgery why there is a review of B12 patients.
It's possible to submit a FOI (Freedom of Information) request to ICB/Health Board or GP surgery asking for a copy of the review process for B12 injections.
Search online for "review b12 injections icb health board uk" for more info.
I think it would be helpful to track down the local B12 deficiency guideline used by your ICB/Health Board.
Search online or try searching forum posts or use a FOI (freedom of information) request to ICB/Health board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Like you I suspect cost cutting as the main incentive.
Unhappy with treatment?
How to write letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.
healthunlocked.com/pasoc/po...
You are not alone in facing this, just search forum posts for "B12 injections stopped".
Some UK forum members turn to self treatment when NHS treatment is not enough.
Some get extra injections from a private GP or beauty salon, some try high dose oral tablets (1000mcg or higher) but this doesn't work for some people and some as a last resort turn to self injection (SI). There is a pinned post about SI.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Excellent advice as always Sleepybunny.
Please consider writing to your M.P. This is because, if we all do so, then maybe we can purchase Hydroxycobalamin Over the Counter as other European countries.
Please raye-12, check out anaesthetic clinics before using them. You will find quite a few ex-NHS doctors and nurses who also have had enough of the organisation and have chosen private practice.
I recently attended one (for something else) and the doctor laughed at my tattoos. Across my stomach is Coeliac with my belly button as the O.
Best wishes
The test is likely to be much more expensive than the injection, so how do they save? Is it because the surgery don't pay themselves for the test, so they are happy to dump that cost on NHS? It sounds really weird. If people need to be tested before each b12 injection that will mean extra work and costs for someone.
So even considering only the cost (and not the suffering and risk for patients) it seems like a strange decision. How can it be cheaper to test people before each injection? At "best" the cost of the injection is replaced by the higher cost of the test. At worst (speaking of costs) the cost of the test is added to the cost of the injection. It's insane.
The blood form I was sent had serum B12 and IFAB test.If serum b12 test 'in range '
And IFAB negative
B12 injections would stop
My letter stated as could do me harm !
Not testing before each injection
You raise an interesting point. I only started my PA journey a couple of months ago but I have already got the impression that the NHS is trying to tightly control the number of B12 injections it’s giving. Trying to get anything other (more) than the initial 6 loading doses and then one every 3 months (2 months in some areas?) is challenging and I’ve not cracked it yet, but I’m exploring the possibility with my neurologist. My GP appears to have no authority to prescribe more even if neurological symptoms are evident as the NICE guidelines suggest.
My personal observation is that there are so many people needing B12 injections. It’s a constant stream at my surgery and I know it’s the same at other surgeries in my town. They are struggling to book all the injections. It begs the question as to whether these are all people with PA and need injections to live as they can’t get B12 any other way, or is the B12 deficiency lifestyle related? Or what is the split? It would be interesting to know, but my suspicion is that lifestyle related deficiency is the predominant category and that’s putting huge cost and resource pressures on the NHS. Would oral supplements be better than injections for those people? If they all have PA then this condition must be huge!
But whatever the cause, cost is no doubt having some impact on the situation.
Pa234aw,
Martyn Hooper wrote the book P.A. The Forgotten Disease. It is a chronic illness so like thyroid disease there is very little money put into it.
One GP has publicly stated that he was fined for going against policies and procedures with regards to Hydroxycobalamin. Integrated Care Boards and Trusts are Businesses. They can laugh NICE guidelines out the door.
Yes, there are ALL those people who need B12 injections. There are vast reasons why we can suffer this disease/condition from a primary autoimmune disease, triggered by another autoimmune disease like Addison’s disease or hypoparathyroidism, gastric cancers, malabsorption illnesses like Crohn’s, colitis, coeliac disease, low stomach acid called hypochlorida, abdominal surgery, genetic conditions like Imerslund-Gräsbeck syndrome) and transcobalamin II deficiency, parasites, gastrointestinal infections, COVID-19 has also been linked, HIV, medication induced vitamin B12 deficiency such as PPIs, metformin, nitrous oxide, antibiotics and many more.
Martyn’s book is worth a read as is Dr Joseph Chandy’s Vitamin B12 in Clinical Practice. The latter also describes how that lovely caring doctor was nearly struck off the medical register for treating people with the disease as needed.
In Europe you can buy Cyanocobalamin/Hydroxycobalamin over the counter in pharmacies. The U.K. have all these bureaucratic crazy rules. The NHS really is not what you think it is.
Narwhal, On your last comment - I know! Having spent the best part of year seeing consultants from almost every ‘ology’ I’ve yet to find anyone that has given me much confidence in the NHS, definitely not when it comes to PA, but for other matters too. My expensive experiences in the private health sector haven’t been much better either, other than being able to get an appointment quicker (although that’s getting harder as so many people are now going ‘private’). Most private practitioners also work in the NHS and have the same level of knowledge anyway. I was told that over 7 years of study to become a doctor, just half a day was spent teaching the effects of vitamins on the body. That may be anecdotal but it makes you think. I currently find myself being bounced between neurology and haematology in the NHS with neither (yet) taking a lead on my PA, with my GP watching in the wings!
BTW, I’m currently reading Martyn’s book.
You are correct about half a day. Pa234aw, why are Consultants, nurses, ambulance drivers and junior doctors striking ? It is not just about pay, it is the working conditions. They are exhausted, fed up and unsupported. In one region, there was 1 neurologist to 80,000 patients. That doctor has a phenomenal work load. Do those in their ivory tower care ? It starts with N and ends with o.
A good doctor just does not have time to learn ‘new’ stuff because they are literally fire fighting.
"My GP appears to have no authority to prescribe more even if neurological symptoms are evident "
GPs are allowed to use their professional judgement to prescribe off label if they feel it would benefit their patients.
I suspect that many GPs cannot face the hassle from practice manager and ICB/Health Board if they prescribe outside of guidelines.
Articles about prescribing off label
gov.uk/drug-safety-update/o...
gmc-uk.org/professional-sta...
"but my suspicion is that lifestyle related deficiency is the predominant category"
I've read that PA is the most common cause of B12 deficiency in UK but there are so many possible causes eg coeliac disease, Crohn's disease, lower stomach acid levels in older people, various drugs eg metformin a diabetes drug, nitrous oxide inhalation etc.
I worry that dietary B12 deficiency might become more common as more people cut out animal products.
I don't have a confirmed PA diagnosis but without regular B12 I quickly deteriorate.
I suspect that many people have multiple factors affecting levels of B12.
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
"my suspicion is that lifestyle related deficiency is the predominant category and that’s putting huge cost and resource pressures on the NHS."
Doubt it. Why would anyone do an injection when a supplement could work just as well? PA is if anything under rather than overdiagnosed. Given the difficulties with testing, many PA patients never even get an official diagnosis and end up self-treating.
From what I've seen of forum posts, many GP's start by recommending tablets, only reluctantly prescribing injections or doing so on the back of confirmed antibody tests.
That someone with a suspected dietary deficiency would not be told to try tablets but put straight onto injections first is implausible. If anything, the NHS is keen on taking as many people off injections as possible, even those who absolutely require injections.
I stopped getting prescriptions from my surgery about 6 years ago because the doctor changed me from cyanocobalamin to hydroxocobalamin when hydroxo doesn't work for me at all. After explaining that it didn't have an effect the doctor allowed me to have a cyano injection and booked me in for a blood test 4 days after the injection. When my results came back high I was told that I needed to have regular blood tests as she thought that I was producing enough b12 on my own. I explained that the levels were high because I had a injection 4 days previous but the doctor wasn't having any of it so i decided to buy my own. I think they have been trying to stop prescribing b12 for years and we just haven't realised it.
"she thought that I was producing enough b12 on my own"
Humans dont produce B12 and the only bacteria that do so inside us are located too late in our digestive track to be useful to us. B12 serum results are meaningless once treatment has started and testing them in order to titrate injections accordingly is nonsensical, foolish and ignores advice from best practice on B12 deficiency treatment from the most qualified and experienced experts in the field.
The same has happened in my area; I was told that everyone on injections had to have a blood test. I told them that I had been diagnosed with PA in 2017 and that a blood test was invasive, unnecessary and therefore harmful. After some debate they looked back through my notes and agreed that I had a formal PA diagnisis (intrisic factor test). It is definitely cost cutting and can be challenged. 'Do no harm' should be the starting point and no invasive procedure should be carried out if not needed.
You only find what you look for - so many here were not tested prior to B12 treatment, nor have been since or else told that, since the treatment would be the same whatever the cause for B12 deficiency, there would be no point.
Now, it seems, there is a point. Except this really isn't the right one.
A formal PA diagnosis from an Intrinsic Factor antibody (IFab) test will only pick up about 40-60% of those who have PA. So, for that reason alone, it cannot provide the dividing line that GP surgeries appear to be looking for. Other reasons include all the other causes for B12 deficiency.
The percentage of patients who have PA or other non-dietary cause for B12 deficiency remains unknown. GP surgeries need to bear in mind that a similar percentage of vegetarian/vegan patients will also have non-dietary B12 deficiency problems. Maybe more. Who knows ? Who even asked ?
Lastly, those who have a functional B12 deficiency caused by hereditary B12 transportation problems that have been identified by DNA specialists need two B12 injections per week for life. These DNA specialists have told me that, even though their report explains this to GP surgeries, some patients will inevitably return to them having had this treatment frequency refused. It really makes you wonder why those GPs bothered to request a DNA test at all.
So, given all of the above, I fail to see any effective and safe cost-cutting in operation here. All I see here is a mess, and far more people suffering needlessly.
So tired of all of this.
I completely agree; I spent years deteriorating with numerous tests carried out and following severe illness and eventual diagnosis was dismissed and under treated. I believe I have functional b12 deficiency but don't think I will ever be offered tests or a diagnosis.
I think that there are many points at which the transport of B12 can stall/malfunction. I don't think that all of them can currently be identified.
It's a complex process, that starts with sufficient Extrinsic Factor (B12 in food), then sufficient haptocorrin in salivary glands, ability to pass through saliva ducts (not a given!)..... and we're still an awful long way from cell /tissue level.
I was devastated that the DNA experts were unable to help me find a genetic cause for my continuing raised MMA -but took heart from the fact that they were so apologetic. This was the end of the line in my search, but I had already got a confirmed functional B12 deficiency diagnosis from my GP and the testing laboratory quite early on, one which no-one else along the way has ever had the confidence to dispute or ability to offer an alternative - so that's that.
I am now absolutely fine about self-treating - but NEVER become reconciled with the suspicion, dismissiveness, arrogance and downright lies I've had to face over the last seven years. Just what on Earth is that all about ?
I'd far rather hear "We don't know yet."
Honesty is the least we deserve.
Noooooo! Not again! If you have PA you need supplementation for life. Your blood test should be fine or high if you are supplementing. The guidelines say do not test for B12. Don't go too long without B12. It will damage your body. You might have to self-inject like many of us. My husband gives me my shots and it is a lot easier than going to the doctor when I need them. I can control the frequency which makes it easier to get enough.
Writing to my doctor
GP surgery wanting to remove my B12 injections after 2-3 years ??
Terrified 
Searching for B12
Can you just recover from a B12 deficiency?
