Thank you all for your advice . Had an appointment yesterday and despite feeling exhausted dizzy and having some pins and needles in my hand. (NHS website says 2_3months with malabsorption issues.) . I was told they cannot go against local NHS guidance and got to wait for 12 weeks for my B12 jab. I am awaiting an appointment since August to see a gastro Dr at the hospital( first appointment since coeliac diagnosis I also have diverticulitis). Can they override it? Is there anything else I can do? Do some of you go privately for the jab? seen that some pharmacies offer a B12 injection. Or is there something else i could take which is easily absorbed ? Really struggling from around week 9 when my energy levels drop significantly.
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Welshtoffee
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Have you considered self injecting ? I also have diverticular disease plus errosive gastritis. Like yourself I were refered to a gastrologist and waited over a year to be seen. When I were seen the consultant odered various scans, gastroscopy and a colonoscopy. All of which have now been carried out. Now waiting weeks, months for results albeit they found something abnormal ! It would be nice to know what and what treatment plan they intend - but hey ho the wait goes on and in the meanwhile the patient suffers.
Narwal10 might have some advice to overcome the barriers your facing but other than to self inject I dont know what to suggest. If they are not going to follow the guidelines we are bashing our heads on a brick wall. Private clinics and chemests are not cheap - I self inject.
Bless you, I know how miserable this situation is. 🤬
It is quite difficult to gage a person via the internet. Some people are extremely determined to have their GP prescribe and treat their PA/B12D as they need it which is generally a big fight. Whilst others believe it not worth the hassle of jumping through hoops. They know they can get support from the PA Society and information about self-treatment.
Me, I have always been of the opinion, Choose your battles wisely.
I managed with a battle to get my B12 injections changed from 3 monthly to 2, albeit a battle. I can no longer jump but will try to find a way through those hoops. Not all are well enough to self inject .
If it were me I would be batting a stiff letter to the surgery manager.
because of their Coeliac Disease and diverticulitis. However, there are so many variabilities from person to person and even day to day with flares of signs and symptoms.
I have a district nurse come out to administer my injection - if and when she turns up. I have literally just come off the phone chasing the nurse up to find out why they havn't ben out.
As for the flare ups - I have more than my fair share of those but the links might come in useful.
I tried tablets , under the tongue lozenges , patches, nose and mouth sprays , but to no avail , when my doctor would only let me have 3 monthly . Only injections work for me , but I am diagnosed with Pernicious Anaemia ( positive Intrinsic Factor Antibodies test )
I self inject ,which is the cheapest and most convenient option . That’s what members on this forum do to keep well . Also take a modest folic acid tablet as vitamin B9 ( folate , folic acid) works with B12 . A private injection is expensive. Beauty clinics offer them as anti-ageing supplements ( they are not allowed to offer them for medical reasons ) Self injection costs about £2.00 ….
You can inject by either Intramuscular ( I.M.) or Sub-cutaneous ( sub-cut) method .
If you wish to know about self-injection , you just need to enquire on this forum .
You might well benefit from high dosage tablets , so its worth trying . You cannot overdose on vitamin B12, which is good to know .
I too remember well after reading al I could the ampoules and hardware arriving here. . . . . . Wifey said no and ordered everything oral she could find. . . . . . But to no avail. . . . . Sublingual drop;s, sprays tablets, you name it.. . . . . . I just kept going down hill and she could see it. . . . We actually had a spray and the whole spray bottle was just shy of 1000ug so in my eyes after trying it all I'd call it a con even for those who could absorb such. . . . . The expense is also wild. . . . Now of late here we seem to have moved to B12 being available once per month for those with neuro etc problems but I dont avail simply because of the hassle and the expense to our health system . . . . . It is much faster, easier to SI. . . . . And anyhow. . . . . Like many, maybe even most I quickly discovered that once a week let alone once or month was not adequate so even the monthly is only ticking the boxes so I;ll keep going every three months and keep that box ticked . . . . .
The whole thing is ridiculous. . . . . . There are western countries where ye walk into a pharmacy and buy as much as you want. . . . . . Spain is one and every one of us can walk in and get it as and when. . . . They even load and supply the hardware if you wish. . . . . . These restrictions put upon other parts of the workd have people thinking that it is is some way worng or evil to SI. . . . . . There are people injecting heroin and other harmful substances every few hours and they are being handed hardware to do so but level headed more fortunates are led to feel bad about even considering such
Thank you. About self injecting where do you get your injections. Are they available in prescription? I'm in the UK.They did say that you can't overdose on vitamin B12 so presumably the 3 month rule is based on fiance.
I self inject . The 3 monthly is based on ignorance. Different people need different regularities of injection Anything from daily to 3 monthly . Based on what keeps your symptoms at bay . No treatment or under- treatment leads to irreversible symptom or symptoms . We need a lot more research on B12 deficiency / pernicious anaemia
Here’s how to obtain B12 ampoules
The following German online pharmacies will deliver B12 depot single use ampoules to U.K. .
apohealth.de. ( in Munich) Site is obtainable in English (Union flag, bottom left on my device ) also deliver World wide.
versandapo.de ( in Leipzig) Site is in German . Use Google chrome to obtain translation . This pharmacy is usually cheaper than apohealth
In German . Use Google chrome if you need translation . Also deliver to Australia and New Zealand .
When filling out the address form , you will see that the country is already filled in with GERMANY / DEUTSCHLAND . You must first change your country to “ Vereinigtes Königreich Grossbrittanien und Nord Ireland “. UNITED KINGDOM , U.K. VEREINIGTES KÖNIGREICH however expressed .on the drop-down list . Do this so that your post code and then the rest of your address will be accepted , .
Other wise you will be unable to order,! and will start tearing your hair out !!!
Amazon.de also sell Pascoe and Hevert , but you can’t use the pharmaceutical references to order
The following brands are obtainable
Panpharma ( formerly Rotexmedica ) b12 depot 1mg x 1ml ampoule ( depot indicates Hydroxocobalamin) ref no 16199653. This is the most popular ampoule used by PAS members .
It is the best value , but sometimes /often is out of stock . You can then opt to be emailed to be told when it is back in stock .
If the Panpharma b12 depot ( Hydroxocobalamin ) is out of stock , you may like to consider the Panpharma Cynocobalamin . B12 The pharmaceutical reference number is 16199707 .
Cynocobalamin may need to be injected more often .
Pascoe B12 depot 1.5mg x 1ml ampoules- Packet of 10 ref no 07568672
Pascoe b12 depot 1.5 mg x 1ml ampoules-10 packets of 10 ampoules (100)
Ref no 07568695
The Pascoe are much cheaper per packet if you buy the offer of 10packets .If you inject weekly , or more
that would cover you .
But if you inject less frequently, the ampoules may become out of date .
Pascoe Cynocobalamin b12 Reference number is 03262634 for 1 packet (1mg x 1ml)
Pascoe Cynocobalamin B12 Reference number is 03262657 10 packets 100 ampoules ( 1mg x 1ml);
Hevert b12 depot 1mg x2ml ampoules packet of 10
Ref no 06078368
Hevert b12 depot 1mg x 2 ml 10 packets of 10 ampoules- ( 100)
Ref 06078380.
Use the pharmaceutical reference numbers to order , much simpler than using brand names , and then you know you are ordering Hydroxocobalamin, not Cynocobalamin , which the companies also sell . But some patients like Cynocobalamin B12 . It is the B12 of choice in the USA , and cheaper than Hydroxocobalamin It’s just called B12, NOT B12 Depot
When filling out your address form, do fill in your country first of all . “Germany”/ Deutschland : will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich Grossbrittaniens , — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that !
PLEASE BE AWARE OF THE FOLLOWING
Also do remember that now the U.K. has left the EU , there is a limit to the value of goods that we are allowed to import, before tax is due on items coming from the EU . Tax is applicable if the value exceeds about £132.00 , but I’m not sure of the figure , so please look it up . On top of that there is a charge of £8.00 made by Royal Mail for processing it. I’m also not sure of how much the tax is . But a member has been shocked by what she had to pay when she ordered over the limit . . So please be aware of this , and check . I believe that even the cost of delivery charge is included in the total . It was when I ordered something from USA .
Very best wishes .
Please also be aware that we need to be glad that the above pharmacies deliver B12 ampoules to U.K. .Because strictly speaking they are not allowed to send any item to a country where that item is prescription only . B12 ampoules are prescription only in U.K. ( but not in Germany ) But I suppose they do this because they know that B12 injections are totally harmless, indeed , life-saving to P.A.patients , unlike many other prescription medications .
For good measure a bit more information
Causes of vitaminB12 deficiency.
In the U.K. , the most common cause is Pernicious Anaemia . This is one of about 100 autoimmune conditions.
The body “turns on itself” and produces antibodies that destroy the parietal cells in the stomach . These cells produce stomach acid and a glycoprotein called the Intrinsic Factor, both of which are needed in the process to absorb vitamin B12.
A positive test for Intrinsic Factor antibodies in the blood is proof of Pernicious Anaemia.But about 50% of Pernicious Anaemia patients test negative. Doctors must realise this, and make judgements according to the patients symptoms , and by ruling out the following other causes of B12 deficiency.
Diet is important, as B12 is only found in meat , fish , dairy products and eggs .So vegans and strict vegetarians must supplement with tablets.
Stomach operations can prevent B12 from being absorbed .e.g. Bariatric surgery
Certain medicines , like Metformin, Proton pump Inhibitors ( PPIs) antacid preparations
and many other medicines also hinder the absorption of B12 .( look up the possibilities )
Helicobacter Pylori bacterial infection can also cause B12 deficiency.
Certain diseases eg Crohns and Coeliac disease and other diseases can cause B12 deficiency
Abuse of Nitrous Oxide ( laughing gas )
Infestation of fish tapeworm ( different to meat tapeworm) caused by eating raw or insufficiently smoked fish
The elderly can also be vulnerable to B12 deficiency because as they age,they produce less stomach acid , which is vital to the absorption of B12.
Pernicious Anaemia must be treated with life- long injections of B12 because it cannot be cured. Tablets are NOT
the answer .
Initially 6 injections are given over 2 weeks .Different patients require different regular maintenance of the injections to keep them free of symptoms ( anything from daily to once every 3 months) .
In the case of neurological symptoms , every other day injections are needed until no improvement occurs .
Delayed treatment can result in irreversible symptoms .
I was told they cannot go against local NHS guidance and got to wait for 12 weeks for my B12 jab.
Many of us in the U.K. are told this. I do hope you are a member of the P.A. Society, they give sound advice.
To answer your questions, some people do :-
1) Seek private Health Care. I have had a private GP ring me in advance and ask whether they needed to order the Hydroxycobalamin in.
2) Attend Aesthetic (Beauty) Clinics and if you explore them properly first you will find some who are qualified nurses and doctors. I have explained before that they have simply had enough of working for the NHS and left.
3) Unfortunately, the wait for the gastroenterologist is unpredictable. In the meantime, you still need treatment for PA/B12D at week 8. The gastroenterologist too may have very poor knowledge of P.A./B12D. They have specialised and then you will find they have specialised again in say 3 particular areas such as Eosinophilic Diseases, Ascites and gastrointestinal stromal tumours (GISTs), MALT lymphomas and neuroendocrine (previously known as carcinoid) tumours basically Stomach Cancers. They will know about Coeliac Disease and Diverticulitis. However, they will have Researched and written lots of Papers on say Stomach Cancers.
If you have an absorption issue there is no point taking something orally which is one of the myths of PA. There are people who can take very high doses but it is very hit and miss.
Recently, I was talking to a man who had facial surgery due to a Road Traffic Accident. The doctor was not discharging him from hospital until he ate a sandwich. The man tried to argue with the doctor. Another Health Professional had to come along and explain to the doctor that as part of the surgery, the man had his mouth wired shut. It was impossible for that man to talk, let alone eat a flipping sandwich.
It is very important to learn about PA/B12D because doctors are not trained in it. As a qualified Midwife, I was not either. Many of us, do what we have to which is self-treat.
On a personal level, is your handle due to your love of toffee ? And/or wyt ti'n siarad cymraeg ? [ translation for others : Do you speak Welsh ? ]
I have a dietician in the house. . . . Got her Honours Queen Margaret Edinburgh and she was taught precious little about pernicious anemia. . . . . She says ye will be lucky to find a GP with any notion of this in the UK anyhow. . . . . . And she is the one who should have been taught and spent countless months on vitamins alone. . . . . Certainly the GP;s where I am are clued in . .. . . I am not sure if this is country wide here or the fact that 2 of them are interested in the subject . . . .But I gave met several sufferers here whereas in nhs land I know no one. . . . . . If the screen says give it to dementia patients then so be it and that is about where it stops for most . . . . . . . . . My sons woman is a anesthetist going on to be a consultant. . . . . She has long since out studied a GP on many fronts and she says ye could could count the hours spent on vitamins and nutrition. . . . . All our food is fortified and these things cant happen is more or less the line . . . . . . The UK's health minster not so long ago stood up in the big house and quoted the UK's leading Haematologist as having advised that once loading doses were complete ye should never need further shots again. . . . . . . It looks like to me that running after Doctors is all but a waste of time . . . . . If ye find one that sorts you out you have won the lottery but in the UK from what I read here it'll only be a matter of time until some scrounger appears and cuts ye off again. . . . . Self help or no help seems to be the norm
Some BigWig in the political field said Broccoli was a great source of Vitamin B12 - e-jit. Welshtoffee may or may not struggle with Oxalates which are found in Spinach, Broccoli and Soy. Coeliac Disease can trigger other severe intolerances to foods, toiletries, alcohol, E numbers, pollen, dust due to the integrity of the gut wall.
It is really awful. . . . . . Here the GP's have to obey the screen also. . . . . I ask if I could have more jabs 5 1/2 weeks after loading as I had crashed as in wifey was driving me there. . . . . GP consulted with the screen and said they could give me 3 more over 3 weeks. . . . . . That was a roller coaster time that shocked me. . . . . . Shocked me into finding this web page which led me eventually to SI. . . . . I had taken antidepressants prescribed on the NHS of all sorts for years and havnt taken any since my B12. . . . . . I also have several bottles of brandy sitting behind my head that I received every xmas. .. . . . It looks like they have started a family. . . . . . I was drinking a bottle every two nights or so at the last . . . . I had used it as an aesthetic for years but no further need. . . . . Alcohol is a good anaesthetic but the more you use it the more you need and it is poison . . . . . . The UK politicians really dont care and the doctors????. . . . . I dont know what too say about them. . . . They are under resourced and ignorant of this at best
Yep what the Screen or Interface says. Although, the Software Engineer who wrote all the thousands of line of coding can have PA/B12 themselves and/or Coeliac Disease like Welshtoffee. They are working from their bathroom.
Great about antidepressants and brandy. People can be dragging themselves around, everything is a mammoth effort which makes them miserable. They can be in so much physical pain, all they want to do is knock themselves out.
I dropped a bit if info which got me asked about the need to SI. . . . . . I replied that is was simple . . . . . It had taken me half a lifetime to get that sick but in an instant it was reversed. . . . . Then I crashed. . . . . .. Then I rollercoastered for 3 weeks. . . . . I told her that getting sick slowly was one thing. . . . . Getting a whole lot better was great but getting sick again more or less overnight was another completely different animal. . . . . . I went on to say that all of a sudden I knew the battle I was fighting and that without B12 I would never survive or win that battle.. . . . . The rest is not for writing here. . . .
Yes, the relapses OldmanD, is something we should all be acutely aware of. Getting thwacked by a cold, virus, an operation, life events such as new job, moving home, new addition to the family, all impact us.
PAB12D is a chronic condition, it needs good management. There is no cure. It is learning to live with it. The acceptance of it.
Yes it is not a constant. . . . . . I use several things as a guide to my intake especially these spots I hate and being unduly tired. . . . . . When I take ill which has been way to often of late I can take increased amount of B12. . . . . . The body is working hard and needs all it can get I think. . . . . I agree stress s a big factor also. . . . . The first year I thought there has to be a point somewhere where I get settled on how much to take but it never arrived . . . . . If ye get tired take more it seems . . . . . . And it is not a slow reaction either .. . . . Thanks for all your answers. . . . . . .
Thank you for all your comments and suggestions. It sounds like many others are suffering the same as me. It is very frustrating and I find the last 3 weeks before the next injection very exhausting and GP's are reluctant/unable to help. Do many of you self inject B12 ? if so are they available from Dr on prescription private or otherwise? Seen that since pharmacies offer B12 as well. If you go down that route do you have to get all your injections through them or o lt the extra doses? Thanks sorry to ask so many question all fairly new to me
I self inject after following a facebook group called Pernicious Anaemia/B12 Deficiency support group. lots of good advise and where to source supplies. I feel so much better
UpdateThank you all for your help and suggestions. Did my research and went back to see another GP explained how difficult it is for me during the four week period before the next B12 injection and for up to a week afterwards .He agreed to let me have my B12 injections every two months for a trial to see if the symptoms improve.
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