Its odd healthcare workers recognise B12 issues from drug abuse but not PA patients…..
bbc.co.uk/news/health-64718233
Feel like printing this one out to give the GP and ask why the young are treated and we are refused help.
”Nitrous oxide: Laughing gas users ri... - Pernicious Anaemi...
”Nitrous oxide: Laughing gas users risk spine damage, say doctors”…..
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RoseFlowerDew
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Hi,
I'm puzzled too.
Maybe you can raise some interest in your local newspaper/other media or talk to your MP.
Link to a thread on Patient Safety, has useful links for those who've had difficult health experiences.
That's probably a really good idea.
When I became deficient and couldn't get a proper blood test, the Doctor said he had to ask me if I abused nitrous oxide. But I was a 43 year old man. So that is pretty unlikely based on the data, right?
That showed to me that my Doctor had absolutely no knowledge of B12 at all. He assumed that 'because we're seeing alot of B12 deficiency from nitrous oxide abuse' that it should apply to me. Rather than actually consulting my file and coming to a reasonable conclusion that someone who has just had a colonoscopy and then surgery (where he potentially received Nitrous Oxide) could well be a candidate for B12 deficiency.
And then he went on to admit to me that he didn't know much about B12. And that felt like he was asking me to help him to do the right thing about it. So the whole thing was a disaster since neither of us knew what we were doing, the lockdown was in full swing so it was taking weeks for any action, and even at the surgery I was told 'we're not doing blood tests mate', even though i was told to get to the surgery for bloods.
Utter utter shambles. I am not surprised Junior Doctors are walking out. Who would want to be a Doctor these days? You can earn more money as a YouTube influencer. And you may even get more respect.
I think these kids are being treated because its always a severe B12 deficiency and it's linked to a 'danger' of drug abuse.
Doctors cannot seem to fathom that the same or similar experiences could happen with b12 deficiency from other means. They haven't been trained in nutrition. This is completely shocking really.
What is the point of a Doctor? I really don't know if there is one these days.
For me PA is already severe by the time balance and walking changes start. How is that different from a drug abuser? For me it was major gynaecology surgery that was the likely trigger.
But sadly I couldn’t be diagnosed even when I couldn’t keep awareness or walk. (Collapsing every few months) In fact I was left on an A&E toilet floor having collapsed and unable to walk back to the toilet contemplating crawling back but worried that I would frightened others. I had to grab stuff to pull myself up the wall and drunkenly fashion go back. (Sorry for the rant but I’m still traumatised)
Sorry to hear that. But I don't mind rants - I think they're necessary for healing.
What I've learned from my own deficiency is that I no longer care about the impact on others. If they see me at my worst, they see me at my worst. It's a hospital. It's where people are at their most vulnerable.
The fact that the BMJ guidelines issued last year clearly state that primary care puts patients in need of urgent care for B12 deficiency at risk of undertreatment or delay, then why should only Noz abusers get urgent treatment and no-one else.
When deficiency strikes with anemia, surely that warrants a visit to AnE or ER for an instant blood test, instant injection, and then primary care picking up the pieces after that in consultation with neurology.
Waiting around for a GP to identify the problem is clearly a problem. Balance problems need assessment by neurology, same as any numbness, tingling, etc. But since that's a three month wait a least, patients need primary to do a blood test as three months could put a patient at risk of serious harm if they are B12 deficient.
Perhaps it's because hospital treatment is more expensive that they don't encourage it. But with Noz, the effects are usually severe and come on fast. But also there is a clear cause. With the rest of us, there isn't always an obvious cause. And the deficiency is slower to build.
So the onus then is on GP's to be better educated about B12. And they're not.
All I guess we can do is hope that the measures they're putting in place for Noz abusers means more attention is given to the severity of B12 deficiency symptoms by the medical community.
It basically seems as if no-one knows what they're doing with it. Which, based on all our experiences, is quite true.
An interesting point about urgent treatment within 3 months. I was given incorrect medication for the symptoms for first 3 years because they didn’t have a clue about PA. Sadly medical research has shown that the first 3 months on the medication caused the most damage to important brain cells (called I think ogliocytes) responsible for repairing damage myelin sheaths. The research was so damming that it was sat on for the previous 12 years!
I think it is an interesting point to consider levels of urgency.
Young people who've inhaled whippets may find symptoms appearing in a few weeks. Those symptoms are likely to be severe due to the high ingestion of a chemical that will inactivate B12 supply.
PA or Autoimmune gastritis is an absorption problem rooted in a dysfunction in the stomach, generally. So could this result in a slower, more insidious but obviously more harmful in the longer term condition?
And could that be the same for vegans and vegetarians?
Whereas onset could be more pronounced in the case of intestinal bacterial problems, where B12 is scarce and more likely to be deprived. This could set off a severe and toxic B12 deficiency that isn't harmful long term but could be in the short term if not treated properly and quickly. Like Noz abuse.
All of these eventualities don't seem to help anyone really. I wish that the NICE guidelines just said 'everyone must received every other day injections until no further improvement', regardless of whether the problems are neurological or not neurological.
One blanket rule could help everyone understand there is one way to treat B12. But the issue here is the urgency factor and the need for immediate recognition and treatment of symptoms. So if GP's aren't spotting the signs early, many people are being diagnosed late anyway.
So if it's clearly a late presentation, with delirium/confusion, neurological problems and hematological problems, GP's should really refer patients to AnE. They should be telling them to go straight to the hospital for a blood test and, if it is B12, they can instigate treatment and the GP picks it up afterwards and continues with EOD injections until no further improvement.
The paper suggests a 'plateau' but I honestly have no idea how anyone would know when that happens.
But maybe, because there are such variations in presentation of B12 deficiency, it's why the GP's never assume it could be that because they've been trained to only recognise it with anemia and as a late anemic presentation. Hence why you were put on inappropriate medication. Whereas if you'd presented with anemia (of course not always present in severe cases) they would've gone straight to assume it's B12 deficiency.
It really is a minefield of significant proportions. Naming the condition 'Pernicious Anemia' is also just so not helpful to medics who have to think about whether that means actual anemia or autoimmune gastritis.
Let's hope the November NICE guidelines step thing in the right direction. The Noz thing is obviously quite a problem now since the Government are banning the sale of nitrous oxide whippets in the UK. I guess prohibition is the only way to stem the flow and reduce the burden on an NHS that doesn't know how they should manage it anyway!
🙄
I’m beginning to have my doubts re new NICE guidelines that I am so desperately hoping will change the situation for us. Reading through the minutes of the meetings released on the website there is nothing indicative of real change. I hope I am wrong and have missed or misunderstood….
If anyone reading this wants to read the Minutes you refer to...
Click on links under heading "Committee meetings" in link below.
nice.org.uk/guidance/indeve...
I share your concerns RoseFlowerDew but still hoping the new guidelines are helpful.
Pickle500
"And could that be the same for vegans and vegetarians?"
I think up to a point. For example on a whole food plant-based diet it would be normal to get 2.5 times the folate RDA. Ordinarily this wouldnt be a problem but this excess folate masks the anemia that is sometimes (incorrectly) expected with B12 deficiency. So neuro problems happen exclusively at least for some time, and until they get really bad are easily dismissable by doctors - oh patient is anxious/depressed, imagining all kinds of sensations, the pins and needles is probably just the normal pins and needles everyone gets stuck in a position too long,.. memory issues, linguistic issues could be imagined or stress. Everyone gets "aches and pains" and fatigue sometimes etc. We all know the gaslighting. Until very severe damage happens and can even be found on an MRI..... by which time the damage might not be fully correctable...
But a big difference I think with dietary B12 deficiency is, provided intrinsic factor is still being produced and gut can be repaired (even if it takes months), then quality of life can be quite different since no need for frequent injections after some time and with enterohepatic recycling working, B12 should be more stable/available than in PA. So in the long run, as long as the gut and intrinsic factor recover, those with dietary should have improved outcomes, but still any damage present from the deficiency period, if it was a long time, may or may not be fully corrected.
yes, Oligodendrocytes ,they form the protective myelin sheath in the central nervous system. Schwann cells do the same in the peripheral nervous system.
I note the following from the guidelines: pn.bmj.com/content/early/20...
Standard treatment regimen
As soon as N2O-SACD is suspected in the emergency department, patients should start alternate daily intramuscular injections of 1 mg hydroxocobalamin without delay, continued for at least 2 weeks. This treatment regimen is derived from the standard B12 course for traditional SACD. In practice, we give the first injection in the emergency department, and subsequent injections as an outpatient on Mondays, Wednesdays and Fridays (figure 1). It is often difficult to organise vitamin B12 injections in primary care, especially at short notice, with real risk of treatment delay or incomplete treatment. In rare cases where a patient needs admission due to loss of functional independence, alternate day injections can start as an inpatient and switch to outpatient after discharge.
So they admit that arranging B12 injections at your surgery is usually difficult and poses a real risk of delayed or incomplete treatment. That was my own experience, since when I called 111 (A useless service) the Doctor suggested I had anxiety and that 'it didn't require AnE, you can just go along to your surgery'.
But it did require AnE. And it took me another week to talk to a Doctor, by which point I was losing my mind, and then it would've been 1 month before I would get treatment. 1 month to lose your mind because the GP on 111 didn't have a clue what was wrong with me.
Key points
Serum B12 is often normal in N2O-SACD; functional B12 testing with methylmalonic acid or homocysteine can help to establish the diagnosis.
Oh right. So it's OK to assume Noz abusers may have functional B12 and use MMA or homocysteine test? But it's not something they're ever willing to do in primary care?
Intramuscular B12 injection is a low-risk, high-impact treatment and should be given as promptly as possible once N2O-SACD is suspected.
B12 injections should continue until improvement reaches a plateau; abstinence from N2O is crucial to recovery and allows B12 injections to work.
How can we measure a plateau?
Successful treatment of this condition requires a clear and smooth set of connections between the emergency department, ambulatory care and outpatient neurology.
LOL!!!!! 🤣🤣🤣😂😂😂😂😂😂
In a serious way and as a serious response I did lose my mind and given medication that not only mask b12 deficiency sanity changes but masked the underlying condition progression which at the same time created further B12 levels dropping. It took 3 years to be partially diagnosed and this remaining 7 to get it clear how damaging PA has been.
In some circles there are stronger views about this kind of medical uselessness.
My GP DID suspect functional B12 deficiency, when I was not responding to the usual B12 injections regime and continuing to deteriorate.
She DID get MMA tested from a primary care request (it took attempts at three hospitals to get that accepted).
She also DID request three B12 injections a week when MMA test result was raised. Nurses only ever actually provided two, telling me they were too busy - but in reality, a lot of anxiety expressed as this was a completely unfamiliar regime for them.
She also DID review this frequency with me - and was delighted to see improvements finally and so continued treatment at this frequency.
I never reached a "plateau" stage. Injections continued at twice a week.
It was only when I got worse again, six months later, that she told me that this had gone beyond the remit of primary care and referred me to haematology. Later, she organised referrals to neurology, gastroenterology, dietician, ENT, oral medicine and adult Inherited metabolic diseases etc.
Haematology tested my MMA four times - despite all the B12, it was still raised. The haematologists were very anti-B12, calling it "toxic, carcinogenic and highly addictive" - imagine my unsurprise then when they told my GP to reduce my B12 injections to "no more than" one every two months. Obviously, the report did not include the above allegations. They decided that raised MMA was "my normal".
Only it wasn't.
I would have been right back to square one at this point had I accepted their opinion and suggested regime. It took three years of very frequent (self-injected B12) to bring MMA back down to within range.
I could not have had better primary care, but you can see that this was not straightforward. Despite treating me exactly as medical guidance suggests, my GP was facing barriers: hospital laboratories inadequacies and reluctant or suspicious nurses being the very least of them.
You mentioned "when I was not responding to the usual B12 injections regime". The prescribed injection routine for people with B12 deficiency and neurological symptoms is injections every other day or twice per week. What most B12 patients with neurologic symptoms on this forum seem to receive is widely-spaced injections, once per month or even less frequently, which might be appropriate for people with only hematologic symptoms and no neurologic symptoms, but is maltreatment for patients with neurological symptoms because people with neurologic symptoms are apt to continue deteriorating, to the point of spinal cord degeneration and serious loss of function and needless degradation in quality of life.
Just to add that some people (including myself) don't even get the usual B12 injections regime despite severe neuro symptoms. In my case I got one set of 5 or 6 loading injections then nothing.
I had to resort to treating myself but did eventually get some NHS treatment years later.
I do think in my case it was maltreatment and I was lucky to avoid SACD.
The loading dose injections did not seem to be doing anything. So I asked, during the fifth injection appointment, what happens after the sixth one, the nurse told me.
"You have an injection every 3 months, but it will be up to you to book the injections then with reception".
When I asked how long this was for, she looked surprised. "For life."
So yes, you were maltreated.
I agree.
By "usual" B12 injections regime, I meant what people generally receive initially in UK, which still seems to be 6 loading injections then an injection every 3 months. This despite medical guidance making it clear that there is a different regime for neurological symptoms, as you say, which is to administer injections every other day until no more improvements can be gained - and that NICE guidelines have altered general maintenance regime to every 2-3 months, and with neurological symptoms that is every 2 months thereafter.
The 3-month maintenance routine is what the practice nurses expected to be asked to do, and what is "usual" for them. 2-month a slightly unusual GP request. Injections 3 times a week after the first six ? This was unheard of, which was why they were so nervous, reluctant - or suspicious.
I cannot remember now if, in the beginning, I was asked about neurological symptoms or not, Once B12 deficiency was found, I was passed onto the nurses to book my six injections. At this point, I had no idea what B12 was, or that I would need any treatment at all after the 6 injections.
This seems to me to be a common enough experience in the UK, from what I have read here on the forum.
It would be interesting to know how many patients with B12 deficiency in the UK were/are given EOD injections from the start until "plateau" stage - and how this plateau was determined.
It sounds like you had a very strong connection with your GP who was on board with your treatment. And no doubt learning with you.
But my point was more around serum B12 testing on presentation.
"Serum B12 is often normal in N2O-SACD; functional B12 testing with methylmalonic acid or homocysteine can help to establish the diagnosis."
The Nos guidelines suggest Serum B12 often shows up on the first instance as normal. So a young person who feels like they're dying and can't feel their legs then finds it almost impossible to get someone to believe they actually have a B12 deficiency. So the recommendations made in the report suggest hospital staff conduct two other tests to help establish the diagnosis - if it shows within normal range.
Perhaps you had a proven low B12 on serum results? Then you received very good care since you had a GP who believed you. It sounds like your GP did everything to support you in spite of generalized ignorance elsewhere in the profession.
But my personal experience, perhaps as someone falling out of the usual demographic, was that I was not believed. The GP was kind but not on my side or believing me on presentation. I was told from the off 'we're seeing alot of somatic issues at the moment'.
But that is nothing to do with me? And what should I do with that information? Leave you alone and deal with it myself? Well, that's what happened.
Because I then supplemented due to confusion and when I did come to the test I was definitely not believed. I did have a low meat intake and high folate on blood tests, so it's possible the folate masked the B12 deficiency. But it probably wasn't - it was most likely my self supplementation in a haze of panicky paranoia and confusion.
But the point is that B12 serum is stated as insufficient to rule out B12 deficiency in a hospital setting for Noz abusers. And two further tests should help.
But this benefit of doubt was not given to me. And so I spent thousands trying to self treat and losing my income because I couldn't work. And all because Doctors didn't belive me 1 year before, and barely believed me at the point of desperation.
So basically, it's a lottery if you're believed.
But, carrying out MMA and homocysteine as part of B12D diagnosis SHOULD be a matter of course. It should be part of the diagnosis - not a flimsy B12 serum which eveyone knows is unreliable.
So it's progress. But for kids who are running to hospital, not for adults who 'shouldn't have any reason to be unwell' according to a GP you spoke to over the phone and had never met before.
Speaking of Nitrous Oxide. Is this not also given sometimes as anaesthesia? And I think causes major problems with PA B12 balance? I wonder how many health care providers know this if I’m right, and it so where are the warning bracelets likethose worn by diabetics, those allergic to aspirin etc etc?
yes, I had a hernia op last September and my PA symptoms came back with a vengeance. Fortunately I was on EOD but I had to add my methylcobalamin spray everyday. Took two months to feel better, but it triggered my spinal degeneration to finally show up and it’s getting worse now.
very sorry to hear that Scott-rock. The lack of will in tackling this issue is deeply troubling.
what’s really annoying is I told the anaesthetist I had PA in the theatre waiting room. And we discussed it before I went through.
Negligence then. If he/she went on to use nitrous oxide. Did they mention so after the op? Even more worrying. I really hope things improve for you as more time passes.
told my surgeon a month later at my check up.
She went “oh no!”
I’m due more surgery so I’ll make sure they know about it at the pre operative check up.
Certainly in A&E it’s a question always asked when one arrives as well - the allergy question. Also, thinking of getting a medi bracelet though I’m sure there will be none for PA. Have to get my own carved no doubt.
I worry about women in labour who have long exposures to nitrous oxide. I suspect this was part of my issues.
NHS page on pain relief in labour says gas and air mix (which contains nitrous oxide) has no harmful effects for those giving birth or their babies. What about those giving birth with low B12 and PA?
nhs.uk/pregnancy/labour-and...
Nitrous Oxide
gov.uk/drug-safety-update/n...
NICE guidelines Nitrous Oxide ( see side effects section)
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