I was getting help with my b12 for every 2 months and all of a sudden my gp has changed her mind and I’m due my shot in 3 weeks but I’m bearly living at the moment.
I have had b12 tests and it says my b12 is “normal” some how I don’t believe the results as I am still suffering with the symptoms, I’m very run down I can not function my nerves are hurting so bad.
I wrote a post about buying the things to do my own shots, I know this is a hard time at the moment but the post that had all the links do not work and I’m wanting to order the items to do this asap as I feel I can not live like this anymore.
I would very much appreciate any help
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LittleA
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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 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.
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.
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.
I hope that this information helps you . I assure you that these links do work . I ordered B12 ampoules yesterday without any problem It is best to register with any of the German online pharmacies . It is a bit difficult to negotiate the sites first time . But persevere and you will get there . Have you got someone to help you , if you are not feeling well due to lack of B12 ?
I wish you all the best .
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
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.
Just been onto Bodfeld , and no problems at all . I am registered with them , and it’s a definite advantage to be . I can only suggest you try that .you do that. Down the right hand side of the first page is a box marked “Log in “ click on that and you will be taken to the place where you can log in or register .
Well I’m at a loss to explain that . Have you got a friend who could help you with it ? bodfeld-apotheke.de. Search for Rotexmedica vitamin B12 depot , or just put in the reference number 03862297 Did you register ?
I know the feeling. I was told my B12 level was normal and did not need the shots but that is untrue. Levels can be 'normal' but it does not mean we do not need our shots. I am about to start to self inject. So much help on here is wonderful. Good luck
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