B 12 injection

[Anonom]

I get a B12 injection every 6 weeks due to a malabsorption problem. My GP reception called me to tell me that I would not receive my injection I explained that I experience quite bad symptoms when it is getting towards being due. I am waiting to see the consultant which has also been postponed to discuss having it changed to monthly. The receptionist when I explained this to stated “Medically you can do without it for a few weeks”. I asked for a phone consultation with the GP only to be told by this “Medical Expert” that there are no phone appointments available. Where to go now?

[JanD236]

Self injection is one option.

There’s been a lot of posts on this subject over the last couple of weeks and if you scroll down through them you’ll see advice given. The PAS has advice (some of the replies give links to this) too.

[wedgewood]

I’m sending you the following information , in case you would like to go down the self-injection route in these very difficult times .

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 inside Germany during the pandemic )

apomex.net

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

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 .

[Jamlady]

I too had my Apt cancelled on Tuesday and was told that I should go to Chemist and buy B12 Tablets, I explained that I have Crohns Disease and a Malabsorption Problems and she said that was ok, so on Tuesday I rang my surgery and asked for my GP to contact me, she did so and was fuming that they had done this, saying that they obviously had not read my notes, so I had to go down in the afternoon and have my injection, and the nurse told me that for the next time it’s due in 6 weeks they are to be told to read my notes.

[Sleepybunny]

Hi,

I copied this 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....

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....

Support meetings are cancelled during pandemic.

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.

[lbtabby]

I am fortunate to have a GP who is teaching Patients to self inject, I’m very grateful as you can imagine.

[Cherylclaire Forum Support in reply to lbtabby]

How wonderful ! It is, to me, the most sensible and safe solution -to maintain treatment for a condition that has no cure. Treatment that has proven to be effective, not "go online and buy some tablets and see how that pans out for you" -which, judging from this forum, seems to be the more popular option !

Anonom : wedgewood and sleepybunny have given you all the useful advice and links you need. There is a youtube video made by another supportive GP, demonstrating self injection. It can be found in a link from Galadriel1 - in response to a post from distractonaut "Picking up where I left off".

[lbtabby in reply to Cherylclaire]

I was told by my Gp that they were going to stop them, but we’re strongly advised by the Haematology Dept at the Hospital it would be detrimental to do so.

I wish it was the same for you all

[Cherylclaire Forum Support in reply to lbtabby]

Mine were stopped by a GP because I self inject, so now I just continue doing what I think is right for me. Reinstatement of NHS injections was dependant on my following their regime. I was certainly not willing or able to deteriorate again on one injection every 2 months, just to prove that that is what would happen.

Where would I be now, if I had ?

So I did write to the surgery practice manager to ask that they continue to treat those who have B12 injections on the NHS during this crisis, after reading all these posts from people here who have had them suddenly stopped.

Awful situation- but better solutions to ongoing patient care not impossible.

As you know !

[Gaudygoat]

One thing you could try is in our surgery you can always bypass the 'Expert' receptionist by telling them it is for a follow-up discussion or appointment.

If it's for an ongoing treatment then it's not untrue!