Just incredible. Good answer that you gave ! Also you don’t feel any more like an addict does than someone with diabetes who has to inject insulin daily . The sheer IGNORANCE is INCREDIBLE .
Thee are some people who inject because it’s promised that B12 injections are anti-ageing and help weight loss . A load of nonsense of course . It’s perfectly legal for example for hairdressers and beauty salons to inject B12 here in U.K. as long as it’s not for medical purposes ! Also unbelievable!!!
What are the rules in Australia about recording calls/consultations with doctors?
I wondered if the PAS support group in Australia - New Zealand would know if you don't know. I think they'd be interested to hear about what the doctor said.
One of the problems is , that when you are suffering badly from B12 deficiency, you feel so terribly ill , and just don’t have the mental strength to challenge the , arrogance , rudeness and downright ignorance of such DOCTATERS ( No , that’s not a spelling mistake! )
What I want to know is do you roll your B12 into a splith to make a joint and smoke ? 🤣
If you were a junky you would be able to go to the Dr, get your drugs prescribed, pop down to the pharmacy to get your syringes and sharps for free in the uk !
I am thrilled to hear you asked the daft mare to show you the paperwork which of course she couldn't produce. 🤔
I think some doctors believe that they can get away with fabricating things and that we won’t challenge them. Ie making up all sorts of spurious connections between things to fob us off when basically they have no answer.
I too was told b12 was addictive in that ‘the more injections you have the more you want’.
Exactly! We are real people managing a medical condition and it's fallout in the only possible way. It's not as if any of us actually enjoy injecting ourselves, but we choose to do so in order to live our life!!! If there was an effective alternative then 99.9% of us would choose not to inject.
Do remember to point out that in the case of cyanide poisoning and smoke inhalation they will give you a 5g infusion and even repeat it a few hours later. This is the equivalent of 5000 of the 1mcg injections we normally.
This is the nice guidelines for the UK. Click on the show option under 'For Cyanokit®'
bnf.nice.org.uk/drugs/hydro... with cyanides for Cyanokit®&text=Initially 70 mg%2Fkg (max,of poisoning and patient stability
(The whole of the above paragraph is the link. Not just the bit this has highlighted)
I assume it will be similar in Australia.
With the amount of chemicals we come into contact with these days it is likely half our b12 is being used to detoxify us. It is one of our most potent detoxifying agents.
I did make sure to mention the cyanokit in my phone call this afternoon. I even took a chance and mentioned that other doctors also weren’t very knowledgeable about B12 and “maybe it was time for a group PD”
A bit too on the nose? Too cheeky? Maybe, but I felt I earned it after yesterdays load of cowdung
Thanks Sleepybunny, I wish my story was unremarkable but it’s turning into a bit more of an epic. Which I know a lot of wonderful people on here also have experienced.
The other problem with her comments is that a tolerable upper limit is not something that scientists "find out about". It's decided upon in a very involved process by expert committees in different organisations in different countries. In Europe, the EFSA do this. The decision is made based an an accumulation of evidence from sources from epidemiology, randomized controlled trials, case reports, meta-analyses etc. This accumulated evidence is sifted through to arrive at a decision on what the safe upper limit for regular intake should be. Upper Limit research documents are long, technical and involved. It's not a value that is just "discovered" out of the blue.
In decades of sifting through the B12 evidence base, no organisation anywhere in the world has come up with an upper limit for B12. Because the evidence for it is not there.
Science is always evolving - as such I think we can expect the B6 upper limit to change in future since there is no international consensus on the right number, but I can't see a B12 tolerable upper limit arriving any time soon, given the lack of any evidence-base to support it.
Her whole story is just implausible. It is either gross ignorance or she thinks she can get away with the story thinking you will not know enough to challenge her about it.
I’ve also had that thought. Mapping out the average rise and fall of an injection would be interesting.
I know that after about 2 months of EOD injections, I had a blood test that included b12 and the result was about 1500. The GP (my original one) pointed it out to me and I said “oh, I expected that to be higher, that’s interesting”.
I’ve just finished speaking to the practice owner. It was mostly positive.
General gist of it is: Dr S went home and realised she stuffed up, and was very upset when she got to work. She met with the owner to debrief and reflect, and wanted to apologise profusely and sincerely for the words she used and her behaviour. She also spent time looking up B12 on Cochrane and wanted to let me know that she has concluded that “while there wasn’t much benefit to B12, she could see that there was also no harm.”
I’ve asked for her apology in writing and will take some time to decide if I stay at this practice or not. I also noted to the owner that several other doctors that I had encountered there also didn’t know a lot about B12 and maybe it was time for a group PD.
At the moment I’m still mad and upset 🤷🏻♀️ and took great delight in my injection this morning, knowing that it was going to help me get through the day and that phone call.
I am pleased you got an apology, hope you do get it in writing.
However the ignorance is unbelievable. “while there wasn’t much benefit to B12, she could see that there was also no harm.” maybe the case for the majority of healthy people who get their b12 from their food daily.
As usual they have forgotten that vitamin means 'vital amine' that we NEED to thrive or even live. Once you are unable to absorb sufficient b12 from food for whatever reason then you NEED b12 via injection at whatever frequency your body NEEDS. In the early days or if a vegetarian then oral treatment might help. I think part of the issue with b12 deficiency is that for many people it is a slow progressive problem.
I think it might be an idea to send them the link to the video about the paediatrician that was close to death and has been left permanently on crutches because neither he nor his colleagues recognised his b12 deficiency for you long. It can be found on b12info.com/films/ , you want the 'Documentary on B12'.
Good that you got an apology. But I still wonder where that story came from about a B12 upper limit being newly discovered. Was she just confusing it with something else she read?... ok mistakes can happen but when you're advising on dosage/safety you shouldn't be going off what you happen to remember about an upper limit, and if your memory of it is vague you shouldn't be stating that with confidence to a patient off the top of your head. You could endanger the patient depending on the substance involved. Her behaviour causes me some concerns...
This is personal to me because my deficiency was as severe as it was, and I ended up on this forum because of the misplaced confidence of a doctor who thought they understood enough to advise me on B12 dosages when they did not. The consequences of doctors confidently advising on things they do not understand can be extremely serious.
Yes, I brought that up in my discussion with the owner too. The fact that she stated with such confidence these “facts” - what if I didn’t have the level of understanding that I do, what if I didn’t have my nursing background or all the research of B12 (and this wonderful group!).
And unfortunately when she’s done it once, how can I possibly trust anything she says in the future, knowing that she essentially lied straight to my face.
Good on you. It's absolutely shocking how many of us have experienced this kind of treatment from GPS - the arrogance of them is off the scale. I am still chipping away at my complaint with my own surgery here in the UK, have the Parliamentary Health Service Ombudsman helping me but their responses to anything I pull them up on (such as sending me away with an oral B12 prescription after loading doses despite admitting that my diet was not the cause of my deficiency...pretty basic failings) they just say they were right and have done nothing wrong. If they would just admit they need to be educated and made an error, I would drop it. At least you have some acknowledgement that they messed up! But do get that apology and then please post it (if you can without data breaches) so we can all enjoy your victory! It takes so much emotional and mental strength to fight them, which we don't have that much of when we're ill.
Well that Dr really showed herself up for what she really is Ignorant!
I've not been accused of being an addict....yet!.....just of in danger of poisoning myself. My last GP surgery apparrantly had mutiple meetings about my b12 jabs.....imagine the waste of money they spent cogitating on b12.....bext GP.oractise told me....doesn'show w on my notes. There must be a hidden array of it all that didn't appear on my SARS request The trouble with this nonsense is that they show themselves up for what they are.......poor doctors.
All that revelation has done for me is that I don't trust a word they say anymore. Its not just crass comments over b12 jabs but other conditions too that leads me to think do they actially know anything? Why are we paying so handsomely for these idiots?????
I think Wez has it wrong about bringing back the family doctor......he should be kicking them into touch! Save a bomb!
I think B12 being sold via salons is giving it a bad name and coming across less as a medicine and more of a "fix" or energy boost etc.Having said that, the doctor was obviously wrong in their insinuation.
Is your GP currently providing you a B12 prescription and how frequently? I reckon most GPs will have a negative view of their patient self injecting, even if they don't openly admit it.
Living in Australia, B12 is available at the pharmacy openly but doctors will still give a script and get you to come back for the injection itself.
Last June (July? Who knows), I advocated to be put back on weekly injections after coping badly on monthly and my dr (not this lady but at the same practice) agreed and then I pushed my luck and said I wanted to self-manage the injections since I was an ex-nurse and it was wasting my time and hers to come in for an injection each week. She agreed readily and after a week, I started increasing my frequency to see what helped.
I feel very fortunate in comparison to my UK friends here who have to fight for the prescription or ship it in from overseas.
Also, I’d like to add - doctors should always be advocating for patient ownership over their treatment. B12 would be an ideal one to hand over the reigns really
But it's not a medicine! It's a vitamin! We definately don't want it labelled as medicine. If you lived in Germany you could buy it over the counter or pop into any beautician and have a jab.
It's a vitamin that for some unknown reason the powers that be wont allow us to just buy it. It has no known level of toxicity. It's a madness.....and they cause harm by limiting it!!
It's been placed in the blackhole really. Neither in the control of patients or the doctors as they've not been trained on its use.Either they need to treat it simply as a vitamin and make it otc or make it a controlled drug where the doctors are told of its importance and actually know how to spot deficiency and treat it properly.
I prefer the former option. The doctors have had mutiple meetings about my b12 jabs.....and its seems a group of them could t figure it out....so they then had MDT mtgs still confused. My neurologist knew and wrote yet again....so they had to allow them.... So yes over the counter ampoules please!! 🙏🙏
Thank you for highlighting this story, and for standing up for yourself confidently. We know how hard that is to do and I am sure you have inspired others. The Pernicious Anaemia Society has a health care professional membership for doctors and nurses and other carers from all over the world and it is free for them to apply. There is some encouragement that at least the doctor reflected and came back with a slightly different viewpoint about B12 even if still not an informed view. Maybe your GP practice would consider signing up to PAS, pernicious-anaemia-society.... Feel free to pass on this link. We are at the forefront of research and information and that surely would be a good place for their practice to aim to be, to help their patients.
The only issue I have is that I don’t have an official diagnosis of PA. Just chronically low iron, vitamin D and then the significant drop in my B12 that eventually led to me collapsing 🤷🏻♀️ apparently I’m still a mystery
I was told by a haematologist on my first appointment that B12 was toxic, carcinogenic and highly addictive. I must have asked for the research evidence from her three times, the third time saying that it was a matter of urgency as I needed to relay this new information to the Pernicious Anaemia Society......
yet each time she managed to change the subject.
She asked me a lot of questions, not allowing time for any of mine. She decided that my dizziness, memory loss, word loss and cognitive confusion were due to being an ex-smoker, smoking causing lack of oxygen to the brain. Even my GP raised an eyebrow at that one. The haematologist took my detailed list of symptoms and copied them "for her records". She promised that at my next appointment she would answer all of them - but of course I never saw her again. She'd got what she wanted. I was given a locum instead.
Having waited months, I had taken care to prepare well for anything she might ask (given the above problems, not an easy task), made sure all was backed up by reputable scientific research evidence. I thought all bases had been covered - and really had not anticipated it being such an utter and devastating waste of time.
My GP had already seen how much I'd improved once I'd been restarted on a higher frequency - injections twice a week - so much so, that she had continued with this frequency for 6 months. The locum's report told her to keep the frequency down to the guidance rate of 1 injection every 2 months - I already knew that at that rate, I would never get back to work, so started self injecting and told my GP the day after I'd done my first injection.... and with support from her and from my employers, I finally got back to work on a phased return.
Not as I was - but the locum's advice, had it been taken, would have made me completely unemployable.
Plenty of bloods were taken - no doubt my B12 was immeasurably high - yet still no-one suggested stopping B12 treatment altogether. So much for "toxic, carcinogenic and highly addictive".
This vitamin is used, in massive amounts, to flush out poisons from the bloodstream - and that is the only link I could find with toxicity. Also found, by the way, one of the practice nurses had made a similar search, because she was concerned that injecting me twice a week might have been damaging. She was fully on board once she'd checked and that's fair enough.
I'm now in my 8th year of twice a week (self-)treatment, as a previously-advised successful frequency. This still works for me.
Still here.
PS : I was last at "about a thousand" in 2016, to my knowledge. 860 ng/L to be precise. This was while I was obviously struggling on the "usual" frequency of 6 loading injections then maintenance injections every three months. My GP kept looking. Two months later, I was diagnosed with functional B12 deficiency, as my MMA was raised - and my frequency altered to twice a week.
It makes me so sad and mad hearing about all of these stories!!
I’ve decided I will ask to record future appointments (with whoever I see). Sometimes I feel so flustered and they talk quickly or gloss over questions. The app that I plan to use provides a transcript and a list of action points at the end. At least this way no one will be able to say “I never said that” and maybe if they know they’re being recorded, they’ll be more cautious with their words!
I have undisputed PA with a serum b12 level of 58 on diagnosis with positive IF and PC antibodies and so many symptoms.
The first GP I saw said they had just caught it in time, this was literally true, I really felt that I was dying. After a few months my symptoms had recovered or were getting much better and my b12 level was now high, she then suggested that I was now cured!
I saw another GP to ask for more frequent injections as my symptoms were returning after being told that they were now to be given 8 - 12 weekly. He said people who thought this was true had become addicted to the injections and it was just a placebo effect. He wrote to a neurologist to ask for his opinion and the neurologist wrote back copying me in to the letter. He said that he had seen others who have said the same thing about symptoms returning before the next injection was due and that in his opinion with most it was a placebo effect. He said that if my b12 was now over 1000 my injections could now safely be spaced out to 3 monthly.
You can argue against the statement of “placebo” since B12 has a therapeutic effect. Placebo has to be a substance that will do literally nothing (ie sugar pills or water etc). So if you’re getting benefit from B12, it cannot be placebo.
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