B12 deficiency due to Ileostomy

I have been forced to self-inject because symptoms of B12 deficiency return after 10 days without an injection . I have Pernicious Anaemia . I had to get the diagnosis from a private doctor , as my GP saw nothing wrong in my low B12blood Serum reading of 150 . with many symptoms - dizziness , breathlessness, palpitations anxiety , totally numb feet ( “idiopathic”) I was only allowed a three monthly injection . I told my GP that I was self-injecting , so received no more injections at the surgery. This what happens if you are frank with the doctor . If you don’t tell them , it reinforces their view that 3 monthly injections are adequate .for all ( well they are for some — we are all different .) The GP told me that no B12 patients at the surgery received injections more often than 3 monthly , and didn’t request more .I knew that at least 2 other patients there had asked for more regular injections , not got them , and had been forced to self-inject , but did not tell their doctors . So that the dilemma you face when you need to self-inject .

Self-injecting is relatively cheap . I buy in bulk — 100 of everything, and one costs about £1.30 - which I consider cheap , when a cup of coffee in a café costs more ( well not at the moment during the lockdown !) So that’s the choice until the medical powers that be come to their senses . The cost to the NHS of the lack of / under treatment of B12 deficiency is enormous , all for the want of a cheap injection . Patients become very unwell and develop serious complications

If you are interested in self-injecting , I will post you a help sheet , Best wishes .

Marrob• in reply towedgewood5 years ago

Thank you Wedgewood, I would be interested in self injecting, could you post a help sheet? Same situation as you, GP won’t budge from 3 monthly injections so think I’ll just have to help myself! Thanks for your help, keep well!

wedgewood• in reply toMarrob5 years ago

I really know how you feel , having been three myself . Self-injecting was the best thing I’ve ever done for my health It’s not expensive , well buying 100 of everything , works out at about £1.30 a shot . You will be able to find out how often you need to inject to keep the awful symptoms at bay . It’s good to know that you cannot overdose . I wish you all the very best .

Pernicious Anaemia/B12 deficient patients and others wanting to self-inject .

ALWAYS MAINTAIN ABSOLUTE HYGIENE WHEN SELF-INJECTING .

B12 ( Hydroxocobalamin ) 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)

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

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 .

The information on supplies applies to UK .There are different sources for U.S.A. mycare.de. used to supply to USA , but I don’t know if they still do . They are only delivering to Germany during the pandemic anyhow .

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SUPPLIES FOR USA .

An Australian company, vitaminb12online.com will ship Cynocobalamin , Hydroxocobalamin and Methylcobalamin kits ( I.M. & Sub-cut ) and single use ampoules, to anywhere on the globe .

vitaminquick.com in Florida supply Methylcobalamin ampoules , but are closed at the moment ( April 2020)

buy-otc.com in Canada , supply Cynocobalamin ( Sandoz , in 10 ml vials , but not in single use ampoules .) They also sell needles and syringes if you have bought injectables from them

biosenseclinic.com in Canada ,. supplies Cynocobalamin vials .

allegromedica..com supply needles and syringes .

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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 . Help for Pernicious Anaemia/B12 deficient patients and others wanting to self-inject .