I’ve been self injecting for over 3 years. The doctor that put me on weekly B12 injections has retired a couple of years ago.
My levels went down to 134 or thereabout and I felt awful with a lot of symptoms. When my doctor put me on weekly injections after a good few months when I felt better and joined healthunlocked I tried to lower the frequency of injections to what I need.
I tried once monthly and had return of symptoms, then 3 weekly I still had symptoms and found that 2 weekly is the right frequency for me with no return of symptoms so symptoms only start in week 3.
My doctor has been giving me 10 ampules every 5 months (10 ampules for 20 wks)..
This time I requested the injections she said no. She’s normally ok with me but she said your levels were too high in last blood test >2000 and it can be dangerous. To cut it short, I explained everything to her and about Martyn Hoopers and Sally Patchaloks “Could it be B12?” book.
She said they’re not doctors !
She said where do you get your references?.......tell me a doctor who says it’s safe and non toxic and I will write you the prescription !....(firmly) 😡
So basically I would like to know if there’s “A DOCTOR” if you join the PAS who can intervene on your behalf because that’s all my Gp wants....A doctor to tell her that it’s safe to have 1 injection every 2 weeks and it’s non-toxic. So I’m not giving up on this !
She said have a blood test and if your levels are low then I can give you the B12, but she also knows the fact that I inject every 2 weeks so how can my levels be low. It doesn’t make sense.
Although I purchase B12 from Versandapo as a back up and had to give away lots last year to people on here as they were spare, the fact that my Gp says that it’s DANGEROUS and TOXIC and get a Doctor to tell me that it’s not. (Meaning I’m a doctor and know better and don’t tell me what to do), I would really like to know if there’s a doctor on PAS if I join it to tell my Gp, who will then give me a prescription without argument.....(end of story with her)
I’ve heard of a Dr Chandy but I don’t know if he’s from PAS. I know he does deal with B12 but is he able to intervene on your behalf and tell the Gp that it’s safe and non toxic to inject 2 weekly.
Sorry I’m a bit angry from yesterday’s chat with my doctor but I really need someone’s help to direct me to a doctor (whether I have to join PAS or other) as my Gp has to keep her word and just to let her know that it’s not Dangerous or Toxic.
Thanks everyone....
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Ryaan
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So frustrating. There is information for doctors from PAS
Also it's in the bnf guidelines about not needing a blood test.
Although I'm on 2 weekly b12 injections. My gp now wants me to try tablets to get a bigger gap. I haven't a PA diagnosis. Had the tablets so just playing ball at present . I dint think im absorbing a thing.
Ask your doctor to quote you the references that state that B12 can be dangerous and toxic . There must be scientific studies and papers if that is true . It would be quoted in official medical guidance for the treatment of Pernicious Anaemia / B12 deficiencies , Your Doctor is muddled .
It’s such a load of nonsense . It just shows us that doctors have poor knowledge of the treatment of P.A. , which many of us know , to our cost .
If she were a good doctor she would know and show you the references . But she can’t . because they don’t exist . I’ll be interested to hear what she says when you can produce the evidence . She will have a get -out response at the ready , I’m sure .
When we go to the Drs' we tend to treat them as Gods and bow to their every word. This is not a safe position to be in from a mental or physical stand point! Just, for safety's sake, remember EVERYONE is fallible!
How about going in, knowing that Drs are just human beings with their own set of misjudgements and personal problems instead? (Many have relationship difficulties, alcohol abuse, health and weight problems, etc, etc, just as anyone can).
They are just gatekeepers to NHS funding for treatment and the NHS treats them as such. (Eg My Dr ordered an X-ray for me but when I went to get it I was told I couldn't have it on the request of a GP and had to get a referral from a physio, who, despite less training overall, is accepted as having more targeted knowledge).
As tax payers we fund their wages and so in effect we are their bosses.
Those who have gone into their profession with the genuine primary desire to help people, without any personal issues, become excellent Doctors and are great to have. They research around each subject and are the first to hold their hands up and say that they cannot know everything.
However, imagine that you have a slightly controlling personality but aren't quite as good as your peers or other family members (Eg you are forever being told "your Dad was a 'marvellous' consultant"!) and so you can't quite hack it and control your world as you would like (even without a rebellious teenager at home!) . You've done umpteen years training and now you feel it's "payback time" (Cue - dramatic music!!).
You are unlikely to be able to help yourself to NOT Lord it over your hoi poli patients, and if one comes in asking for non-standard treatment (that you don't know much about and hence reminds you of how inadequate you are), that you know will make your practice managers (who have done less training than you but even THEY have control over you!) ask questions of you, you are going to take your frustrations out on the annoying patient before you! You know you can say something to shut them up and make the problem go away so you do - and can finally put a big tick in your "I've controlled someone" box! "Next patient, please..."
So, please, next time go in with your copy of clivealive's information AND point out that on her shelf she has BNF guidelines that say to give extremely high doses of hydroxocobalamin for treatment of smoke inhalation, and tell her to look at the package information insert in every pack of B12 ampoules which says that they are for every other day use... AND THEN ask her for her WRITTEN evidence to support her claims that it is dangerous and toxic!
I have been asking on here and in other places for this written evidence from Drs for nearly 5 years and so far not one person has managed to get said information from any Dr to backup what I am starting to believe are just spurious claims.
Don't let the "little darlings" put you down and remember even the best of us make mistakes sometimes.
If it's so dangerous and toxic how come I have improved beyond what I ever thought possible on 1.5mg (1 and a half normal dose rate) every day for 4 and a half years? And some people have been on daily jabs for decades - to good effect! And you are so much better now than you were?
Grrrrr - there are lots of people who would like a fat salary for being incompetent!
Thanks denise but unfortunately I don’t know why but most Gp’s think they are infallible.
I’m quite firm with my doctor now and she doesn’t like the “facts” I tell her.......the response is “I’m not sure” and “where’s this from”...but damn I’m POSITIVE if you’re not sure.
(Thanks to being on Healthunlocked for about 4 years)
She said ok, take a blood test and if your B12 is LOW I’ll give it to you.
How is my B12 supposed to be low if she knows I inject every 2 weeks and they’ve been supplying the injections since 2017 !...nearly 4 years!....and suddenly it’s NO MORE FOR YOU ! That’s a stupid request to have a blood test.
I had a great doctor before they replaced him who put me on weekly injections without a fuss as he asked about symptoms, but he was one of a kind, They don’t make them like that anymore.
When I said he put me on them, she said well he’s retired!.....I seen my old Gp around not too long ago and told him how we’re all being treated by the new Gp’s (husband and wife) and even he said he regrets getting them in to replace him.
The male doctor is far worse and arrogant...I don’t like arrogance.
Continuing with the B12 conversation she said every time you come “I feel pressurised in giving you the injections“ and she feels I’m putting “a gun to her head”......👀
Unbelievable......like I said I have my own B12 which I order online from Versandapo but that’s not the point, doctor’s should not be doing this. I’m fed up of their attitude honestly! They act like the Pharoahs of Egypt, like you said, bow down to them when you walk in and walk out the room backwards when you’re leaving without turning your back to them!
I’m furious at this point and taking NO MORE.
My mind is just rushing with the anger so sorry about the long reply.
Thanks very much for the info you’ve provided and I’m going in when i have it together.....I only need 1 page for her.
The link from Clivealive has excellent info for doctors but I found some “Gold” on B12d.org A book especially for Gp’s on Treatment and diagnosis, should they consider to read it.
The book is called
“Vitamin B12 deficiency in clinical practice” (subtitle) “Doctor you gave me my life back” by Dr Joseph Chandy and Hugo Minney PhD which you can request with a small donation of £6.19 (printing cost) by B12d.org for a 299 page book which is especially for doctors on treatment of B12, or for yourself. I only need one page of that book which states B12 is “non toxic at any amount.”
Here’s a link to that excellent book which you can download for free or just read or download parts needed by headings provided.
I feel everyone on this site should take a look at least.
Yes he was banned from prescribing B12. (I googled him).
Thanks for letting me know, I didn’t know but you did tell me he was threatened with sanctions by BMC.
So I’ll use your link article and the link clivealive provided below. That’s enough for my Gp and I’m not going to argue over something clearly stated in writing in these articles.
If she doesn’t allow me to have then she’s just being a bad doctor and I can’t force her.
Dr a handy is the quite elderly doctor who created the b12d site - he is quite elderly but a wonderful guy, he even talked to me at length on the phone. The society has meetings but they’re mostly in the NE. He provides b12 ampoules for people who cannot get hold of it easily.
I heard that this had happened and wondered why - do you know? Was it because he supplied both b12 and encouraged self injection - I can see why the medical profession would object to that given that it makes them look Neanderthal both in their knowledge and treatment of b12.
It’s because he diagnosed every single person who he spoke to with a B12 deficiency. He told them that they can be secured with megadoses of B12.
We had one person on HU who had been diagnosed with MS. This doctor spoke to him over the phone and told him that he did not have MS, but a B12 deficiency. Yes - he diagnosed somebody without even seeing him and gave him dangerous advice.
But it matters not one jot why he was sanctioned. If you use him as a source with your doctor then it will not take long for your doc to find out that he was sanctioned. And that will make anything Doc C might say worse than useless.
Yes I believe you are right . The medical “powers that be “ won’t listen to him , although he is a great man with huge knowledge of B12 deficiencies . He doesn’t conform .
You could try one of my favourite documents, the treatment of B12 and/or folate deficiency recommendations from Hull and East Yorkshire NHS trust where they say...
“Vitamin B12 does not accumulate to toxic levels. ”
If someone says that B12 is non-toxic because it is water soluble, they are making a huge mistake. fbirder identified one extremely water soluble substance that is extremely toxic in very small quantities.
It is NOT the water solubility of B12 that makes it non toxic.
(However, the fat soluble vitamins can more readily accumulate and, having accumulated, tend to remain in excess.)
“Just because something is water soluble doesn’t mean it’s safe”
Dear Ryan,
Here Is a qualified doctor who believes in B12. Dr. Hajo Auwerda. He is a Dutch haematologist. A few years ago he set up a B12 clinic in Amsterdam. He initially intended to split his work between that and his regular hospital work. However within 3 months if it opening, he had a 6 month waiting list. He also sees people from all over, not just Dutch folk.
He has attended and spoken at two PAS conferences and held one of his last year in Rotterdam that Martin Hooper spoke at. You can here him talk on the PAS website . 2016/2019 conferences.
He has the same trouble convincing Some Dutch Doctors as in the Uk.
One milligram of B12 would usually contain 1000 micrograms of B12.
When injected, the full dose gets into the bloodstream.
When taken orally (e.g. a 1000 microgram tablet), it is unlikely that more than 10 micrograms will be absorbed even in those who have no absorption issues.
1ml is not the same as 1mg! Millilitres are a liquid measure only . Milligrams are a measure of weight !
You can obtain B12 ampoules that have 1 milligram of B12 in 1millilitre of liquid = 1mg x 1ml - Rotexmedica supply these through certain German pharmacies.
Hevert supply 1 milligram of B12 in 2millilitres of liquid =1mg x 2 ml
Pascoe supply 1.5 milligrams of B12 in 1 ml of liquid = 1.5mg x 1ml
I had information from my late husband who was a very respected endocrinologist. However at some point he told me to stop the B12 as I had enough in my system. I did not need more for a number of years .I had a problem with the injections I think from the solution and now take tablets.
I had a nurse at my hematologist office who said the same thing. I got a new hematologist. There is no way to overdose on b-12 injections. What you don’t need with go out in the bathroom! Get a new Dr!
Which type of B12 injections are you taking? I did some research and selected Hydroxycobalamine, it's absorbed better than any other type of injection, it's very safe. But I am not sure about Cyenacobalamine because it has minute amount of cyenide in it and also it's synthetic. Methylcobalamine is not stable in liquid form. Hope this helps.
Gambit62 and Foggyme have just made corrections about "synthetic" and "natural" in the closed thread linked below. I was using them erroneously. Gambit also added pertinent information about the safety conversation about cyanocobalamin, facts and misconceptions.
Foggyme's ending post has extensive information regarding b12 choices.
(@Foggyme and @Gambit62 if it is against board rules to link closed threads, obviously let me know and delete. I just think that that thread contains critical and valuable information)
I also think this article is interesting nkindia, regarding cyanide and cyanocobalamin - how it all works. And how it is completely safe.
Yes, when injected all forms of B12 are 100% absorbed.
The definition of ‘absorption’ in this situation is ‘the amount of the drug that enters the body’. For this definition the gut is considered to be outside the body.
It took me 6 years to persuade my mother's GP to reduce from 3monthly to 2monthly injections. She's recently been on a cocktail of Lansoprozol and various antibiotics. Now very confused. I think B12 has been depleted. They think I'm an absolute nuisance. Now up for another review (I know it will go back to 3monthly) I'm at my wits end. Now looking into care homes because she's so depressed and lonely. It makes me think, the millions of pounds it would save the NHS if B12 deficiency was understood and not tossed aside. Perhaps GPs get bigger bungs for pushing drugs for symptoms B12 could solve far more cheaply.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Which form of B12 is best to SI?
Gp stopped my b12 injection and Iv had pernicious anemia 11 years , is this allowed apparently due to new research says my gp
GP advises against going on forums such as this as most people on “these types of forums” are likely to be mentally ill 😳
Neurologist says there is no scientific reason to inject more frequently 
