I have U. COlitis and PA for long time, on B12 / 3 monthly with persistent symptoms.
Today I visited my lovely switched on GP, she had a letter from the Heamatologist , to avoid a visit to him and he suggested her trying the same dose B12 every 2 months instead. NOW SHE INFORMED MY THAT THE NHS is most likely to gradually move away from injected B12 as a way of long term treatment. NEw scientific evidence is proving very regula intake of oral B12 will give a small passive dose even in mal-absorbtion cases and there is medical research proving it. Where as no proven medical scientific benefits are supportive of more than 3 monthly injections. We know systematic inprovments seem to be evident from our patients on this web site. Another reason for the medical shift is the swing effect patient of coming down ,symptomatic when needing the next shot, this is regarded of the b12 jab undulation , however frequent is causing the swing effect. So oral long time is going to replace . I can not Waite to here your comments , go check it out , ask your Gp if this is going to be a rolling out treatment plan. NHS moving away from injection B12!
Written by
Bobonuts
To view profiles and participate in discussions please or .
Hi Bobonuts I've been having B12 injections for 46 years (for P.A) and I don't much care how I get it as long as it keeps me "clivealive" and over 75. I had two thirds of my stomach removed at the age of 17 and I cannot imagine how B12 will "passively" pass through my gut and into my bloodstream.
i just read the research doc you linked to here. I didn't see any new research indicated that tablets of B12 taken daily as a small passive uptake is being considered as a replacement of 3 monthly or more regular 1 mg injected B12! THat is what was indicated today at GP's. IN my case, although the haematologist has said if nuralogical symptomless persist to ( as per protacol ) He can increase to 2 monthly 1mg IM injections. I was told that NHs is going to try moving away from all B12 injections and go for tablets. A small passive B12 will be absorbed even in Malabsorbtion patients. This is the worry . So between now and my next B12 jab I am to supplement with 50 micro g daily and record symptoms. And go back in 2 months to discuss . So rather than have the jab more frequent, oral not sublingual top up.
I'm loath to go against your medical advice Bobonuts, would not presume to tell you what to do and stress that I am not a medic but can only relate my personal experience:
I was told by a GP friend three years ago that her surgery was not allowed to give B12 injections because they were afraid of being sued so, forgive me if I doubt this new research or why so little has been heard of it? It has also been discovered that many GPs are 17 years behind in latest research. They are generalists, usually with little time these days to give to a patient's history and symptoms, and it's mine and other forum members' experience that they are often told their blood tests are normal when they are not, with symptoms dismissed or treated as of little consequence.
Combining all the above with your history of colitis and PA with neurological symptoms and knowing that B12def/PA is a complex disease with serious and permanent neurological consequences if not treated adequately, I personally would prefer the established treatment recommended by the BNF, - as you probably know - injections with Hydroxocobalamin every 'other day until no further improvement'. Tablets with 'only a small passive dose', seems inadequate and too risky, in my personal opinion.
bloodjournal.org/content/1/...
PS. I've been self injecting every other day for six months with slow but steady and continued improvement in neurological symptoms.
Thanks Polaris, I read many posts on here I wonder if you or anyone knows the cost a GP Has in treating 1 patient with 1 Mg B12 injection .Is this whole thing about Money. Or pure lack of backed up science. ?As evidential sypmption improvement in so many inderviduls doesn't count. Excuse me " it must be plocibo effect they say" and even IF oral b12 in form of cyanocobalamin ( needs to be 1 absorbed and 2 converted to Methyl ) to works perfectly , big IF for many PA diagnosed people, what is that cost ? Because it's not free. Also does the old medIical history of Gp using B12 in large doses as a well being tonic and nothing more , having no real place in the medical treatments field. I must say I find this ironic. Is was used widely , it did improve many symptoms but no one knew why!
All i can say is the study is floored. When I was first diagnosed I asked my doctor if I could go down the oral path, he didn't want me to and recommended I had the injections. But he aloud me to trial it my level was 104 so 2 months on I had my levels tested and was 122 my doctor said no way my body wasnt absorbing well enough and I had to start injections or I would become very poorly.
Thanks KATIE, I hope you are well now and not symptomatic. This approach for you seems very reasonable. Together you tried oral ttreatment then at his advice with not enough improvement went on to injections.
Thankyou. I'm only symptomatic 2-3 weeks before my injection is due which is today so as you could imagine it feels like my birthday waiting to open that present just like when you was a child. I hope you to are well 😀
The process for reviewing treatment guidelines is quite long and complex and involves input from patient groups such as the PAS.
There have been several cases of surgeries in the UK announcing that they are moving to tablets but this seems to be local initiatives and the PAS has intervened to reverse the situation in a lot of cases.
There are quite a few studies suggesting that oral B12 can be very effective in treating patients with B12 absorption problems but they also show that it doesn't work for everyone.
This information is most useful, because if there was a widespread move to change treatment guidelines the PAS would know about it by now. So local initiatives seems to be a strong possibility in my area. I am curios as to cost a Gp has in its treatment for PA , injections verses prescribed oral tablets. I can not understand the Huge reluctance to make patient symptom free.
cost is really a knee jerk reaction and is being taken in a very narrow context. The main cost of B12 injections is actually the time to administer the injection (including all the paperwork that goes with it. This could be reduced by showing patients how to administer injections (and not fixating on the injections needing to be IM).
High dose oral tablets aren't currently licensed as a formal NHS treatment - only 50mcg tablets for use in cases of dietary deficiency. A phial of B12 costs less than £1 - tablets cost a fraction of that but its difficult to really do the maths because its so variable on just how frequently people really need injections as opposed to the frequency in the guidelines.
If you are aware that oral is being pushed in your area please contact the PAS to make sure that they are aware.
On the context - the maths needs to also take into account the costs of not treating - potentially taking someone out of employment or reducing their earning capacity and the cost of treating complications but getting to some objective measures for that is going to quite difficult because consistent information on the costs (including loss of tax revenues) just isn't available.
Thanks again, during these posts today I just signed up as a gold member of the PA society . I intend to keep abreast of the situation and will surly let you know of any developments .
Nor can I Clivealive, if your treatment is working and you are not symptomatic fab, you didn't say have much or how often , I can not see the removal of injected B12 at primary care. Even if it's only 3 monthly . But that is how I understood the new thinking is going.
Treatment = if it isn't Brocken don't try to fix it. If the fixing isn't sufficient do more fixing. Don't Re invent the wheel.
Surely, if the NHS has any intention of moving patients onto high dose oral, there simply MUST be a licensed product? And a definition of "larger". And the word may needs to be replaced by a positive statement.
Looking that up [the BNF bit], I noticed on the same page:
Vitamin B12 is also needed in the treatment of megaloblastosis caused by prolonged nitrous oxide anaesthesia, which inactivates the vitamin, and in the rare syndrome of congenital transcobalamin II deficiency.
They give no further information as to treatment after prolonged nitrous oxide anaesthesia. One shot? Loading dose regime? Low dose oral? And falls into the same old, same old, trap of taking megaloblastosis as the only assessment of B12 insufficiency.
Vitamin B12 should be given prophylactically after total gastrectomy or total ileal resection(or after partial gastrectomy if a vitamin B12 absorption test shows vitamin B12 malabsorption).
Anyone know what they mean by "vitamin B12 absorption test"? Is such a test available and reliable? A quick Google finds pretty much only the venerable, and unavailable, Schilling test.
yes, its probably a hangover from the days of the schilling test. The only way of doing it in the absence of the schilling test would probably be to constantly monitor B12 levels looking for a downward trend - but reality is that this will probably lead to a longish period of deficiency before the problem is correctly identified.
When I last went for my diabetes six-monthly consultation the nurse was looking to see what drugs I was already on, just in case I had to go back on medication. She saw my prescription for B12 injections every two weeks and seemed surprised.
"Are you still on this?" She asked. "We're supposed to be cutting down on B12". I just gave her one of my sternest looks and said "well, that's not going to be happening".
I've spoken to my GP three times since then. He hasn't mentioned anything about it. I'm still sure he'd rather have me injecting good, clean NHS B12 rather than that dodgy stuff you get on the Internet. Little does he know I'm doing both.
That statement alone says pretty much everything - "We're supposed to be cutting down on B12"
To have an aim of cutting down prejudges the case. To ask the question: "Is this patient having more B12 injections than necessary?" should be a standard part of medicine - but better put as "Is this patient being treated properly for B12 issues?" And the answers should allow: "No, in fact they need more injections."
Still a worry, Fbirder, the nurse stated we are supposed to be cutting down on b12", she got that from a practice inisative to cut back . She didn't make it up. So even in your lucky 2 weekly Jabs, others in you surgery may not be so lucky. I can see me needing to go down the self inject root very soon. This should be of the utmost concern because what we need is to reduce the NHS costs etc by pushing to take control at home self inject, Many illness do including Diabetics. Unless we fight for this we face a bleak future. And I for one seen my father with PA poorly managed even latter in a Nursing home he needed a blood transfusion for ignorance in managing him. I don't want that.
I see purchasing and managing our PA injections as a strong possibility it may wall become private care not NHS primary care in a few years.
My haematologist told me that oral B12 doesn’t get absorbed into the liver which is why we must have loading doses. I know that I take oral overlaying the two monthly injections. If we cannot absorb oral B12 to the liver then my haematologist says that the loading doses will only last 2-3 years before those liver reserves are exhausted and you are back to square one.
I would love to know how all that is squared with this new approach.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Gp 4th update 
B12 advice for a friend 
