Hi
I have been having B12 injections for many years now and have them every 10 weeks. Obviously with the Covid19 virus they have been stopped and I have been given Cyanocobalamin 50mcg tablets twice a day. Just wondered if these tablets will do the same job as the injections. Are there any side effects with them as there wasn’t an instruction leaflet with them. I do have the ampoules however not good at s.i. Any information would be appreciated.
Stay safe all.
Personally these tablets did nothing good for me. I have PA and cannot absorb which is why injections were prescribed.
When my gp pushed me onto them about three years ago I became very ill again and ended up in hospital before my injections were reinstated by the consult.
I never want to feel that ill again so now have my own supplies and SI
If you scroll down and read some of the posts you will find many many posts about this.
We are all different but if you have PA you will have absorbsion issues.
Thank you for your reply.
Its been suggested 1000mcg tablets may help.
I took 2 ×50mcg b12 tablets prescribed between injections to try and get a bigger gap. I have 2 weekly injections at present.
For me they didnt do anything.
Good you have ampoules of b12.
When you say not good at si.
Do you do IM?
I now have my own supplies and do subcutaneous injections. That might be an option for you?
Yes thank you. Yes IM but only once my husband did it and it was so painful. Will have to see how things go taking the tablets.
Help for Pernicious Anaemia/B12 deficient patients and others wanting to self-inject .
ALWAYS MAINTAIN ABSOLUTE HYGIENE WHEN SELF-INJECTING .
B12 ( Hydrocobalamin) single use ampoules can be obtained from some German online pharmacies . B12 ampoules are an over the counter item in German pharmacies. These pharmacies are strictly controlled by the German Ministry of Health , so no cause for concern. No prescription need in Germany . ( how enlightened ) . Many members of our forum obtain their B12 ampoules from these pharmacies , and they are very reliable .
bodfeld-apotheke.de ( site in German , but can be obtained in English from a drop-down list at the top right-hand corner of the
site) About €9.00 courier no matter how many you order .
versandapo.de ( site in German only , so you might need a translation app , or use Google Chrome .) Also about €9.00 courier no matter how many packs
mycare.de is obtainable in English . The courier charges are higher with this pharmacy . ( This pharmacy is only shipping to German postal addresses during the pandemic)
counterapo.de click on Union Jack at bottom of site to get English .€12.00 shipping.
You can pay using PayPal , amazon pay or cards .
It’s a really good idea to register with the pharmacies . It’s so much easier then when you reorder .
amazon.de ( German Amazon ) -available in English. The disadvantage here is that the several pharmacies who supply B12 ampoules through amazon.de , do not all ship to U.K. You need to trawl through until you find one that does .
Search for Rotexmedica B12 depot . Don’t forget “depot” , because you could accidentally order Cynocobalamin, which Rotexmedica also manufacture .Cynocobalamin would also work . but the NHS uses Hydroxocobalamin. Cyno is cheaper . The ampoules are 1mg x 1ml
Hevert , another company produces 1mg x 2ml ampoules .
Pascoe manufactures 1.5mg x 1 ml ampoules .m
The ampoules do not need to be refridgerated, but should be kept under 25 celsius. If temperature gets higher , put them temporarily in the top of the fridge.
Every German pharmaceutical item has a reference number printed on the packet . It is called a PZN. You can search for your required item by using this number . It takes you straight to the item . For 1 packet of 10 ampoules , or multiples thereof , you can use the number 03862297 . For a pack of 100 ( 10 x 10) use the number
03862305 . These numbers are for Rotexmedica Hydroxocobalamin ampoules only . You cannot use these numbers when ordering from amazon.de.
Needles , syringes , swabs and sharps disposal boxes are obtainable from medisave.co.uk
I buy long withdrawal needles 21G x 1 1/2 inches . The withdrawing process makes the needle blunt when it touches the bottom of the ampoule ( ouch!)
I use a 25G x1inch needle for injecting .
Open the ampoule using a swab wrapped around it , to avoid nasty cuts . The weakest spot on the ampoule is marked with a spot on the neck .If you have a problem with this procedure, a device called an ampoule opener , about £4.00 is obtainable from amazon.co.uk
exchangesupplies.org also supply needles and syringes .
To inject Intra muscularly (I.M.)
I use a 2ml syringe , although the ampoule is 1ml. This ensures that I can get every last drop of precious B12 into the syringe . Flick the ampoule to ensure that the B12 is in the bottom , and break it open at the neck, where the weak place is marked with a spot . . I then pull out the plunger on the syringe , and inject the air SLOWLY into the ampoule . Then , when the plunger retracted , every last drop of B12 is in the syringe . Now the injection needle is put on the syringe and all the air in the syringe is expelled by pressing the plunger , until a tiny bead of B12 appears on the tip of the needle 💉. Now you are ready to inject into the middle outside third of your thigh , where the muscle is nearest the surface ( Vastus Lateralis ) . Inject at an angle of 90 degrees .
If you are needle phobic , there is help in the shape of a device called an Auto-injector costing about £100.00 at the moment ( 2020) This is available at a Danish company - unionmedico.com
I don’t use one , but I’ve heard good reports .
If you do want to order one , be aware that the device takes a specific size of syringe etc. So wait and find out before you order any from medisave etc
Also if you are needle sensitive , a numbing cream can be used ( Amazon)
I swap thighs each time I inject .
The above method is I.M. ( Intra -muscular ) and you can find videos about it on Utube . Some OK , some awful.
You can also inject sub-cutaneously ( sub-cut) A shorter needle is used . I know nothing about it , except that it is an accepted way of injecting B12 .
If you are having a B12 injection for the first time , you should have someone nearby , in case of anaphylactic shock . This is a very rare reaction , but I feel obliged to tell you .
Do not worry about overdosing on Vitamin B12 -you cannot . It’s a proven fact.
I have been self -injecting for 4years now , but I do remember how very nervous I was the first time . I was shaking like a leaf . I don’t turn a hair now . It has changed my life . Don’t be impatient . Also some people feel worse before they start to feel better .
Remember to include vitamin B9 in your daily diet ( also know as folate in food -green leafy vegetables, peas etc. ) In tablet form it’s known as folic acid . A modest 400 mcg tablet daily would be good . It cannot be stored in the body for long . B9 works synergistically with B12
If you have Pernicious Anaemia, it’s a good idea to take a multivitamin and mineral tablet , as you will have low or no stomach acid . Hypochlorhydria/Achlorhydria, because the P.A. antibodies interfere with stomach acid production as well as Intrinsic Factor . So absorption of vitamins and minerals can be inhibited .
P.A.patients might also benefit from probiotic -rich foods like organic raw sauerkraut, kimchi , kefir, real yoghurt and kombucha drinks as lack of stomach acid can upset stomach flora and lead to gut problems , which probiotics can help with... Failing that a probiotic preparation — capsules etc.
Chewing really thoroughly and taking smaller meals more often can be beneficial for someone with low stomach acid . The enzymes in saliva can get to work on starting to break down the food .
Pernicious Anaemia patients should also be aware that it is an auto-immune condition, and as such , rarely comes alone .The most common “ companion” is a thyroid condition . But there are many more.
Very best wishes .
Thank you very comprehensive reply. I have the auto injector but just useless at doing it. Husband helped, once, but so painful.
I will see how I get on with the tablets. I believe my practice is going to keep to the tablets as a replacement to injections.
I am a long time member of PAS.
Thank you for all of the info.
Susan
If you have P.A .you won’t find tablets helpful . Otherwise , P.A. patients would all have tablets instead of injections . Injections by-pass the stomach , which is where absorption takes place . But it doesn’t happen in P.A. patients because they lack the Intrinsic factor and stomach acid , due to damage caused to parietal cells in the stomach , by antibodies .
isn’t B12 deficiency and P A the same. So if I don’t have P A but B12 deficiency, then the tablets will work. Why have they given me injections for the last 20 plus years I wonder.
Susan
No it’s not quite the same . P.A. is one form of B12 deficiency Its an autoimmune condition ,which cannot be cured , and you need B12 injections FOR LIFE !
B12 deficiency can be dietary if you are a strict vegetarian or vegan ,when tablets would do the trick .(Vitamin B12 is only found in animal products ); If you have Pernicious Anaemia , you have to have injections. You cannot absorb b12 through the stomach . I’m sure you can get more information from Mr Google - Just amazing that you have been treated for so long with injections ,and now tablets should suffice! Best of luck with it all .🍀
So I believe then according to what you have said that I have PA, my late father had it also, I am not vegetarian or vegan, I eat liver to try and boost etc. I recall when first diagnosed how unwell I was, and how tired, suffered with tinnitus and other symptoms applicable to B12 deficiency/PA.
Therefore if my understanding is correct these tablets are not going to help me at all and i should go back to injections as soon as I can.
Best
Susan
Yes , those symptoms you mention are all typical for P,A, But there are many more . We get allotted a mixture of usually 5 — but it varies .And yes it is very often genetic . Does your doctor know that your father had it? But I’m afraid that most doctors are really ignorant about it . I once did asked a doctor if he remembered learning about it and he said -yes -it was one Friday afternoon ! You need your B12 injections .
"I have been given Cyanocobalamin 50mcg tablets twice a day"
The 50mcg tablets that you have been given are only normally recommended for dietary deficiency.
See guidelines link below.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
I am doubtful that 2 x 50mcg tablets will provide you with enough B12.
If they are trying you with these, I would have expected them to tell you to take more than 2 per day.
There had been some research that suggests that about 1% of oral B12 is absorbed through the gut by passive diffusion.
I'm not sure how many patients took part in this research though; I'm not convinced this is reliable for every patient.
NHS uses hydroxycobalamin injections 1mg
1mg = 1000 mcg
So close to 100% of 1000mcg B12 getting into the blood compared with a possible 1% of 100 mcg.....
Keep the GPs informed if you start to see an increase in symptoms, a return of symptoms you used to have or new symptoms appearing.
I'd also suggest talking directly to PAS.
Thank you. I was given hydroxocobalmin injections, every 12 weeks and then last year it was increased to 10 weeks. I will certainly talk to my doctor when things settle down. I did have a blood test a short while ago to check my B12 as I was feeling quite tired again.
Hi,
I copied most of the info below from a reply I wrote on another thread.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
From PAS website
pernicious-anaemia-society....
There are lots of comments under the posts as well.
From B12 Deficiency Info website
b12deficiency.info/blog/202...
Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.
b12deficiency.info/blog/202...
Most recent blog posts/news items about stopped injections
b12deficiency.info/blog/202...
PAS statement published 11th April
pernicious-anaemia-society....
If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice for doctors during pandemic.
b-s-h.org.uk/about-us/news/...
Click on General Haematology tab in link above
then
Click on BSH Advice on Supplements tab
I feel that some of the details in the BSH advice are concerning, there is a recent thread on forum which discusses this.
I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
Have you considered joining PAS?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a telephone helpline for PAS members to ring.
PAS support groups in UK
pernicious-anaemia-society....
Have you also considered putting any concerns about treatment into a brief, polite letter to GP?
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See Page 2.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
I am not medically trained.
Thank you for all of the information I will try to take it all in. A lot of information. I am long term member of PAS.
Best wishes
Susan
Hi. I use Sublingual Vit B12 Powder as a booster and it really works. Because it is absorbed under the tongue, it byepasses the stomach and it's cheap! Available online.
Hope it works for you.
Patsy Howe
I got by on these type of tablets but sublingual for about a week, maybe ten days before I started feeling very ill and had to start injecting myself again .
Only use them inbetween EOD injections now .
Dose prescribed is wrong for anyone with an abosorption problem. very high dose oral can work for some patients with absorption problems including PA but the dosage needs to be higher than 1mg = 1000mcg per day.
I do take my own supplements on top of my injections but I take 1000 tablets twice a day, I know I will absorb only a little but 50 is very low. I have PA. It's such a difficult time, but there are many knowledgeable people here that will advise you, wishing you well xx
Why have your injections stopped?
As the consequences of stopping can be neurological damage they should continue. Mine did - and I did not have to argue- just had to get the GP (by phone) to tell the administrators he approved and book me in. I had to go to a deserted surgery and the nurse in PPE gave me the injection, (She did have to take her glasses off as they kept steaming up!)
I have had pernicious Anaemia since I was 27yrs old, I am now 73yrs and I was really ill before they discovered what was wrong with me. They did a sternum marrow Test which consisted taking Marrow from my breast bone, glad they don’t do it now as it was a very sore procedure. This was what they did to diagnose P.A. at that time. I was hospitalised right their and then as doctor said I was literally dying. I started on injections every day until just over two weeks and started to pick up.
I asked my doctor if I could take VitB12 orally, and he explained why I couldn’t take it this way. I didn’t want to have injections all the time, but he said the intrinsic factor in my stomach did not absorb vitamin B12 from food I ate so I had no choice. I am a retired nurse so it’s not a problem for me to self inject. Over the years it has been proven it is a hereditary problem for me and my family. As my dad, an uncle, and 2 cousins had it, they are now deceased not because of P.A. Now my 3 adult daughters all have it and all on injections, although none were as young as myself when it started. I also have thyroid problems and have taken thyroxine for years, as does one of my daughters. So I think P.A. and Thyroid problems could go hand in hand too.
Ellie 13
Depends why you are being prescribed vitb12. I do not absorb it well in digestive system even though i don't have PA. So tablets don't work for me.
Having PA means the intrinsic factor in my stomach does not absorb any Vit B12 from the food I eat. I therefore need to get it right into my blood stream via injection. As it is necessary for the body to have healthy red blood cells to keep a body healthy. As I have said above this is a hereditary health problem in my family.
I find this so confusing. 20+ years ago I was told I had to have B12 injections. I was given the loading doses at that time and prescribed injections every 12 weeks, last year the doctor altered it to every 10 weeks because I was struggling. My late father also had to have injections for B12.
I am not a vegan or vegetarian and therefore it is not caused by that. As I understand it, I have PA because I am unable to absorb B12 through the normal means.
So why else would I be prescribed B12.
Susan
Cyanocobalamin 
Tablets
B12 Tablets
G.P. changed husbands B12 injection to tablets
