Can you believe this 14 hours before ... - Pernicious Anaemi...

Pernicious Anaemia Society

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Can you believe this 14 hours before my next injection?

GGourmet profile image

Dear Mr XXXXX,

I have been reviewing patients on B12 injections and note you haven't had a blood test for some time. Would you please book for a b12 blood test before your next injection and then a follow up appointment with me after (there will be a number of weeks wait for the appointment) to discuss whether injections are needed or whether there may be better ways to keep your levels up.

Thanks, Dr XXXXX

XXXXXC Medical Centre

59 Replies

I'm a bit lost here, and sorry for acting a little bit stupid here, is it meant to be 14 weeks before your next injection maybe? What will happen if you have just been 'topped' up recently with your B12 injection, and they decided to give you a blood test not long after you have received this injection, surely you'll have a false reading? And then you'll know what will happen then,your injections will be stopped, and they'll be saying your levels are perfectly normal and no more B12 injections, glad to see that the GPS aren't wasting time eh,NOT, when once you're on these injections, most people need them for the rest of their lives, boy, I can see why you might be getting worried ,its like running a car without any petrol ,it's doesn't make sense, I hope you can get things resolved, best of luck.

GGourmet profile image
GGourmet in reply to Cb1963

I’m turning up tomorrow for booked injection ready to make that formal complaint.

Sallyannl profile image
Sallyannl in reply to GGourmet

I assume you are well and satisfied with treatment as it stands. If so then I would turn up get your injection and then write to the practice. Keeping copy of the letter. Why would they want to change a tried and tested formular that keeps you healthy. They wouldn't change medication for other conditions if it worked well.

I have just gone back to your original post and remembering what an inspirational story it was and how it gave everybody hope.

Good luck tomorrow.

Cb1963 profile image
Cb1963 in reply to GGourmet

Ah,right, i understand,it seems so difficult, boy, what a horrible situation, I couldn't do without my injections, I know after around 8/9 weeks that I'm due a 'top' up,as my muscles start to twitch, and I feel like my heart is thumping in my chest, and I already have neuropathy, so I can't afford to even be taken off the doctors list,I have experienced other symptoms along the way, even needed folic acid tablets ,so one blood test,and your OUT, hmm,bet they won't do a repeat test to help you out in the future🙄,that's the most worrying part,especially if you've been a long term patient, more like a cost cutting exercise, perhaps they should start checking all their patients who have been on long term omeprazole, or who have had numerous general anaesthetics, this will keep the doctor busy, finding out patients who need to be tested for B12 deficiency as this is a common cause, rather than trying to dispute those who are already dependent on these injections in the first place,that's a more worthwhile cause I would say 🤔

Calypsoplus profile image
Calypsoplus in reply to GGourmet

Part of the oath they take in medical school , is Do No Harm, but they all forget to stand by this. I find it inhumane that they can treat a person with a med that keeps them well, then withdraw it. Give them hell xx

beginner1 profile image
beginner1 in reply to GGourmet

Good luck tomorrow. Do let us know how you get on.

Eloise81 profile image
Eloise81 in reply to GGourmet

Similar happened to me! Turned up on my injection day & told I had to have a blood test first, but did get my injection. Next injection (monthly) turned up & told I wasn’t getting it as my levels were “over the roof”!!! Long story short I eventually got to speak to a Dr. having sent 2 letters, 1 of which was ignored, then to have a fight to even get an injection every 3 months!!! Not once did anyone ask what my symptoms are! I’ve had this condition for about 20 years!! No, not impressed with GPs…lost any respect I’m afraid! Good luck!

Sleepybunny profile image
Sleepybunny in reply to Cb1963

"its like running a car without any petrol"

Your comment made me think of a blog post on B12 Deficiency Info website.

b12deficiency.info/the-tank...

Cb1963 profile image
Cb1963 in reply to Sleepybunny

I fear we are slipping into a situation where patients are now being summoned by GPS and perhaps being denied these vital injections because of covid, another excuse not to see patients, but have managed to find time whilst they are looking for something else to do,either they don't understand these conditions, or are being told from health authorities to cut down on these treatments, either way it's a dangerous and slippery path that's now being trodden, the health problems it can cause is detrimental to many individuals, and could be fatal, I can't understand why these situations are now being driven by various practices,its unsafe, and quite worrying for many folk,its not as if you can purchase these products in the UK, boy,what an almighty problem, and we are the ones who can see the problem ahead 🙄

Sleepybunny profile image
Sleepybunny in reply to Cb1963

"patients are now being summoned by GPs and perhaps being denied these vital injections because of covid,"

PAS news items about B12 treatment during Covid pandemic

pernicious-anaemia-society....

There is also a push across UK to put more patients onto high dose oral B12 as an alternative to IM B12 injections.

pernicious-anaemia-society....

While some on this forum can manage their B12 deficiency with high dose oral b12 , I think from responses on forum there are many including myself who can't.

Gloucestershire has already has a treatment algorithm where most patients seem to be put on high dose oral rather than IM injections.

b12deficiency.info/blog/202...

I suggest to any UK forum members that they keep an eye on local guidelines on manangement of B12 deficiency for their CCG/Health Board to check whether injections are being replaced by oral tablets. Local guidelines get reviewed every few years and some have a section on treatment during pandemic.

PAS news item on contacting NHSE (NHS England) about treatment concerns during pandemic.

pernicious-anaemia-society....

It includes a statement by NHSE that suggests that patients can complain to their local Clinical Commissioning Group or regional office of NHS England & NHS Improvement if they they are unhappy with the care they are receiving.

Not sure of the equivalent process in rest of UK.

I was told having a blood test would just give a false reading as I am on b12 injections. I wanted to get out of injections as I'm phobic of the doctors. They basically told me I will be on them for life.

GGourmet profile image
GGourmet in reply to Helper123

Absolutely 100% true. Thicko doctors who cannot follow NICE.

beginner1 profile image
beginner1 in reply to Helper123

A GP who knows his stuff! I thought they were an extinct species.

Cb1963 profile image
Cb1963 in reply to beginner1

😆lol

Helper123 profile image
Helper123 in reply to beginner1

😂

Unbelievable I'm expecting similar as my gp service under new management .

I've already been asked to have an intrinsic antybody test.

Bit late hey.

If negative another excuse to stop treatment even though only picks up 50% of those with PA.

I'm hoping while my present Gp still there treatment will continue.

Even if its yo keto me off her cases !

They also do not acknowledge that once put on b12 injections many many need levels to be kept above reference ranges.

So what they start must continue.

Once on injections

No further testing shoujd be done as a waste of time snd money .

Grrr

Keep going

At least yiu well enough to battle

Should not be happening

Why csnt they leave successful treatment alone??

Gambit62 profile image
Gambit62Administrator

Suggest you refer GP to BCSH and Nice guidelines - both of which say that further blood testing after treatment has started is unnecessary

GGourmet profile image
GGourmet in reply to Gambit62

Thanks. Shall do. What is BCSH?

Gambit62 profile image
Gambit62Administrator in reply to GGourmet

British Council for Standards in Haematology. Last published guildeines can be found here

onlinelibrary.wiley.com/doi...

GGourmet profile image
GGourmet in reply to Gambit62

Thanks. It looks instructive and appears to rebut the text message my GP sent.

GGourmet profile image
GGourmet in reply to Gambit62

British Committee for Standards Haematology?

I hope you get your injection. Despite telling my doctor that I didn’t want a b12 test as I’d recently had an injection they tested me anyway and then told me off for having too high levels and said I had to stop b12 as it was dangerous.

I hope you complained.

Honestly I’ve given up.

Thats bad they tested it anyhow

When my GP wrote and asked me to attend for s blood test I asked why? I explained about skewed results and although blood would show high B12 it cannot be converted. He then gave me injection to do at home at my request. Good luck.

swimfitswim profile image
swimfitswim in reply to

Hi Teresa, can you share where you get your B12 injection supplies and how you are getting on with self-injecting. My GP also order blood tests....they don't like that I'm on 2-monthly instead of 3-monthly and they've come back as 'normal'! I've also sent the link to the NHS website showing the unreliability of the tests but I fear they are going to say I don't need the B12 now as my blood test showed 485ng/L [taken before my B12 injection] so within the 'normal' range. I think I'm going to have to go down SI route. Thanks

in reply to swimfitswim

I have been self injecting for approximately one year it has been very easy with the support of this group. I source my B12 from Germany and my needles from medisave good luck today.

Nackapan profile image
Nackapan in reply to swimfitswim

That's not high at all b12 injections They shoukd know that!!

I'm concerned the medics will assume all going okay if we all direct to self inject.

Mps need writing to again

PAS need informing

So blood tests are being done.

There was a shortage of vials

swimfitswim profile image
swimfitswim in reply to Nackapan

The blood tests were 13.08.21 [so just before the 'we've run out of vials situation' but only just got the results this week [I had to ring and the receptionist just told me 'normal' despite my emailing them with the NHS link stating the unreliability of the blood tests as there's no way of establishing whether it's active or inactive vitamin B12.....I have a telephone appointment with the GP on 28.09.21 so will gear up with all the information. Thanks.

Nackapan profile image
Nackapan in reply to swimfitswim

Goodness what delays .Hope it goes okay

Make sure you ask them to give you a copy of your blood test results.

Just having a shower ready to go get the injection. Let’s see what happens.

Sallyannl profile image
Sallyannl in reply to GGourmet

👍💉

swimfitswim profile image
swimfitswim in reply to GGourmet

Keep us updated as I'm going through a similar experience. My blood tests came back as 485 ng/L so I'm within the 'normal' range. Thanks

So far I’m here and my appointment wasn’t cancelled. First hurdle done with.

Great news. I got injected and the nurse said she will resolve issue with the GP. Phew! She even insisted I have my flu jab sooner rather than wait for my next B12 in 2 months.

Sallyannl profile image
Sallyannl in reply to GGourmet

Great news, just a shame doctor wasted time and money on the letter and caused you anxiety.

GGourmet profile image
GGourmet in reply to Sallyannl

Yep

Nackapan profile image
Nackapan in reply to GGourmet

Oh thats good news. Stress though

Hi,

Glad you got your injection and that nurse is going to speak to your GP.

Some more links that might be helpful in future for you and others reading this thread.

PAS article

TESTING B12 DURING TREATMENT

pernicious-anaemia-society....

PAS have a useful leaflet "Treatment Changed - What can you do" with suggestions.

pernicious-anaemia-society....

You would need to be a PAS member to access it.

Possible that PAS might be interested in hearing about your individual case.

There could be others in your area getting similar letters/messages.

pernicious-anaemia-society....

Person who runs B12 Deficiency Info may also be interested.

b12deficiency.info/

Have you checked whether your CCG/Health Board has updated its local policy on treatment/diagnosis of B12 deficiency recently?

Search forum posts for "Local guidelines", as some have been posted on forum, try an internet search or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy of local guidelines on B12 deficiency.

It's also possible to submit a FOI request to GP surgery but very likely to irritate them.

Blog post about B12 injections being stopped

b12deficiency.info/are-your...

Petition to make B12 ampoules available over the counter in UK

change.org/p/dr-june-raine-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MPs and devolved representatives may be worth talking to.

A few go to the press....

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

GGourmet profile image
GGourmet in reply to Sleepybunny

Thanks Sleepybunny.

I told the nurse of my medical past and she knew I’d been through the mill but also told her that this was pretty much a nail in the coffin for me, receiving the message late at night before next treatment on the back of dealing with the deaths of 18 close people in the last 18 months, then just learning of number 19 going into a hospice last Friday. It’s like they think this is the only thing going on on in your life. No bedside manner.

Sleepybunny profile image
Sleepybunny in reply to GGourmet

I'm sorry to hear about so much loss in your life.

Sending a virtual hug.

"No bedside manner"

I think one of the hardest things about the years when I was fighting for treatment was the uncaring attitudes of my GPs at the time, it felt like they weren't interested in finding out what was wrong with me and got quite annoyed when I tried to find out myself.

I have nicer GPs now....not perfect but okay with that.

A bit of kindness goes a long way.

HelloI am fairly new to injections. My B12 was below 150 before I started and my MMA and homocysteine were alarmingly high. (more than 2-3 times what they should be). How do I find out if this B12 therapy is working if I can’t have any labs done while I am taking injections? I realize my serum B12 could be artificially high but could looking at how much MMA and homocysteine has changed be accurate, as they indicate activity at the cellular level. (I think). I was going to do 6 months of injections, wait a month and then get these 3 labs tested. The doctors were quite alarmed at my levels so I need some reassurance that the B12 is working as I am experiencing worsened symptoms since beginning. I have several confirmed genetic mutations that affect B12 methylation. Thank you to anyone who can help me understand.

GGourmet profile image
GGourmet in reply to EiCa

Hi EiCa

Can I suggest that you repost this in the main section, as it has appeared in my comment and probably won’t be seen by those who need to see it, if it remains here.

I don’t have the experience to help you other than to say that severe B12 deficiency can take a very long time to recover from and in some cases damage is permanent. It’s taken me around 3 years to go from neuropathy - mostly visual - to no neuropathic symptoms but I really hit it hard and had some great specialists along the way.

Sleepybunny profile image
Sleepybunny in reply to EiCa

GGourmet has made a good suggestion. More people will see your story if you start your own thread with it.

Click on the blue pencil icon at top of the screen to start your own thread. If you need help then you could contact one of the forum Admins.

healthunlocked.com/pasoc/me...

EiCa profile image
EiCa in reply to Sleepybunny

Thanks Sleepy. I know better. Just made a mistake. 😯

Sleepybunny profile image
Sleepybunny in reply to EiCa

I don't think you made a mistake ...just wanted you to get the best help possible.

Pleased that you found the forum. It has helped me immensely.

Good luck with finding answers.

Have you read this blog post from B12 Deficiency Info?

b12deficiency.info/a-b12-se...

Another article on Testing B12 during Treatment from Dutch B12 website.

(units, ref ranges and treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

GGourmet profile image
GGourmet in reply to Sleepybunny

No, but will do now. Thanks.

Oh I am so sorry. I did not mean to sabotage your post. I may have been responding to something someone said in the thread.

GGourmet profile image
GGourmet in reply to EiCa

That’s quite okay, so long as you get the help you need.

😀👍

I can very much believe it. The level of understanding [or lack of it] in our medical community is hard to comprehend. It would be interesting to know quite how many of those letters have been issued by the surgery in recent times, and who started the process, but I doubt they'd tell you.

It would be akin to asking your butcher if the chicken legs they have in the window are front legs, or back legs. If the butcher doesn't know the answer then I'd go somewhere else. However, I'd be able to find another butcher in less than 14 weeks.

Keep smiling, as it disturbs them.

Good luck.

Sallyannl profile image
Sallyannl in reply to FlipperTD

The one thing I cant understand is why when a patient is well as in ggourmet case as well as many more of us on b12 treatment doctors stop injections only for us to deteriorate and have to revisit time and again. Not only does it make our lives pretty much unbearable, we cant plan anything and live each day (some in a lot of pain) as it comes. When we could carry on with b12 with a normal life. Its ruined many peoples lives and livelihoods and basically the nhs/doctors are responsible for that.

Is it the pharmaceutical companies brainwashing doctors into believing there treatment is as good. We will never know.

FlipperTD profile image
FlipperTD in reply to Sallyannl

I appreciate the situation and the dilemma that doctors face, but at the same time the problems that deficient patients face too.

In the defence of clinicians, it's a hard one to call. There's evidence that mega-dose oral B12 can be absorbed by many patients; even those who can't absorb normal dietary levels of B12 as they have no functioning IF, but some will definitely need to be maintained on injections.

GGourmet profile image
GGourmet in reply to FlipperTD

The use of high dose oral B12 does several things. It’s not within the NICE treatment regime, which might invalidate life assurance claims. It also pushes the lifelong cost onto the patient, as the NHS does not pay for sublinguals, according to my GP.

There is a recognised treatment plan by NICE that works so, why meddle?

I’d rather he had contacted me about things that do concern me such as my hearing loss that they had been helping with but forgot when they changed my GP 6 weeks ago.

FlipperTD profile image
FlipperTD in reply to GGourmet

Your points are very well made, and I agree with you.

However, many folks choose to self-inject because they believe it helps them, and they're saddled with that cost themselves.

Some patients don't feel that the usual approach fits their circumstances, and I respect that too.

I'm not clinically qualified, and can't pass judgement one way or the other.

I hope they, and you, get your situation sorted out!

Good luck.

"or whether there may be better ways to keep your levels up"

My understanding is that the evidence that oral B12 treatment is as effective as IM (Intra-muscular) B12 injections is of low quality which suggests to me that a lot more research should be done before high dose oral B12 is regularly prescribed as an alternative to IM injections.

Oral B12 articles saying low quality evidence that oral is as good as IM

cochrane.org/CD004655/ENDOC...

pubmed.ncbi.nlm.nih.gov/295...

smw.ch/article/doi/smw.2017...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

The Conclusion of above article states that there is no proof in large double-blind studies that oral treatment is as good as B12 injections in reducing symptoms of B12 deficiency.

I did find this study that suggested that oral B12 could normalise B12 levels

bmjopen.bmj.com/content/10/...

PAS news item on Oral Tablets

pernicious-anaemia-society....

Link aimed at health professionals about oral B12 available in UK

sps.nhs.uk/wp-content/uploa...

Mentions a 1mg oral cyanocobalamin tablet available to prescribe in UK from May/June 2020

Informed Consent and Ethical Approval

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 medical professional) this means that GPs should discuss the pros and cons of the change in treatment with patient, make sure they understand the issues and get patient's agreement (preferably in writing) before treatment is changed.

Patients unhappy with a change to oral treatment who have not previously consented to the change, might want to point out in a letter to GP that they have not given informed consent for the change in treatment.

Of course a GP surgery could argue that a change from IM injections to high dose oral is not a major change in treatment. I personally would argue that it is a major change especially when the quality of evidence supporting such a change is low.

Keep copies of letters from GP surgeries in a safe place.

It might be useful in case there is a need for formal complaint in future.

If the change to oral treatment is part of a study the GP surgery or CCG/Health Board is taking part in, worth asking if the study has got "ethical approval".

Patients told about a possible change to high dose oral B12 might want to ask if they will be taking part in a study and if they are, they might want to ask further questions about whether the study has "ethical approval" from an ethics committee. If told that I was part of a study which does have ethical approval I would ask, in writing to GP surgery and possibly CCG as well, to see proof of the ethical approval.

I suggest putting any questions about changes in treatment in a letter to GP and practice manager as probably harder for them to ignore.

Most studies involving patients need ethical approval.

BMJ article on ethical approval from 2009

bmj.com/content/338/bmj.b450

Responses to recent BMJ article

I found some of them worrying - oral B12 treatment is mentioned

bmj.com/content/369/bmj.m13...

As I said in another reply, there is one UK CCG I am aware of whose treatment algorithm puts most patients onto high dose orals instead of injections....there could be others that I am not aware of.

If my GP surgery said we are changing our patients on IM B12 injections to high dose oral tablets, I'd say, "Show me some high quality evidence that it is as effective". They won't be able to at moment.

I tried for a long period to manage my typical B12 deficiency symptoms with high dose oral tablets (5mg) because my then NHS GPs refused to treat me but they did very little for me and I had both dementia type symptoms and symptoms affecting my spinal area. For me only injections made a real difference to symptoms.

See Point 8 in letter writing link below if GP wants to change treatment to low dose cyanocobalamin tablets normally prescribed for dietary B12 deficiency.

b12deficiency.info/writing-...

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