B12 Deficient.

Hi, I've been diagnosed with B12 deficiency and I'd like to know what options are available to me as far as buying and self-administering injections goes. What is the estimated cost and are there likely to be any side effects? Thanks in advance.

[Nackapan]

If you've been diagnosed with b12 deficiency I would strongly advice you to recueve your loading doses at your gp surgery .It's safer in a medical environment for first few injections incase of a rare bad reaction. (Anaphylaxis l

Often it's the maintenence doses thst are difficult to get if a higher frequency thsn 2- 3 mother is required .

Thats when alot top up

German pharmacies online hsve supplies at different prices

It csn be as littke as a £1-2 per injection with needle snd syringe.

[Hidden in reply to Nackapan]

Thanks very much for your help. I'll see whether I can persuade my G.P. to help.

[Sleepybunny]

Hi,

Are you getting any treatment from your doctors?

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF (British National Formulary) treatment info in book is out of date.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I have written some very detailed replies on other threads which may be worth searching for.

I am not medically trained.

[Hidden in reply to Sleepybunny]

Thank you, this is all really helpful.

[Sleepybunny in reply to Hidden]

Hi again,

Some more info that may be useful...

If you're in UK, I suggest you get hold of the local guidelines on treating/diagnosing B12 deficiency for your CCG/Health Board and compare them with BSH, BNF and NICE CKS links in my other reply.

Try an search of forum posts with term "local guidelines" or name of your CCG/Health board as some of these local guidelines have already been posted on forum.

Or try an internet search with "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a link to or copy of B12 deficiency guidelines being used in your area.

Some of these local guidelines are not helpful so worth knowing what you are up against locally. See blog post below.

b12deficiency.info/blog/202...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

Best piece of advice I ever got was to always get copies of or access to all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Some UK forum members end up treating themselves as they cannot manage on NHS levels of treatment. I feel this is a last resort but I was forced to when NHS refused to treat me.

More about misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(from Dutch b12 website - units.,ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Links below are to forum threads where I left more detailed replies with lots of B12 info which you may find useful eg symptoms, causes, more B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.

There may be some details in the links that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.

[wedgewood]

Side-effects for you of injecting B12 ? Improved health and well -being ,and getting rid of the horrible symptoms are the main side effects ! Some patients get a little acne , but not usually , and it will subside . The cost is really minimal when you think of the benefits ,About £1.50 everything included — less than a cup of coffee !

Here is how to obtain B12 single use ampoules from some German online pharmacies . No prescription required in Germany .

German online pharmacies that will ship to U.K.

Brexit has caused problems for German online pharmacies that were supplying vitaminB12 ampoules to the U.K. They now have to register with U.K. customs and collect any VAT for them and have extra paper work , customs documents etc because we have voted to leave the single European market .So many of those pharmacies have given up shipping to U.K. . Some , thank goodness,still do

The following are the various brands that are supplied..

Panpharma ( used to be called Rotexmedica) have 1mg x1ml B12 depot ampoules

Hevert have 1mg x 2ml. B12 depot ampoules .

Pasco have 1.5mg x 1ml B12 depot ampoules .

versandapo.de has now resumed deliveries

to U.K. . Large and reliable pharmacy . Charge €9.00 for DHL delivery . Accept payment by Paypal and Bank Transfer . You can earn points when you purchase . Always have fresh ampoules .

bodfeld-apotheke.de. A large and reliable pharmacy , but they now only accept payments from U.K. by Bank Transfer . Simple and free of charge if you have mobile/ internet banking.They supply the information you need to make a transfer . Otherwise it’s a trip to your bank and a charge of £25.00!

Courier costs €9.98.

apotheke-marienbrunn.de Delivery €12.95

The drop-down list of countries on this site calls the U.K.

“Vereinigtes Königreich Grossbritanniens und Nord Irland”

( The United Kingdom of Great Britain and Northern Ireland in case you don’t recognise it !)

shop.apotal.de courier €19.95 takes PayPal and cards

apohealth.de. click on American flag for English(!)

Courier €14.90

pharma24.de

curavendi.de. Courier €19.34

Amazon.de ( German Amazon) Obtainable in English

At the moment they are not stocking Panpharma b12 Depot . They have Hevert B12 Depot , but they come in 1mg x 2ml ampoules . Panpharma come in 1mg x 1ml ampoules . Reasonable delivery charges .

——————————————————————————

Search for Panpharma B12 depot ( Hydroxocobalamin)

These ampoules are 1mg x 1ml

But if you use the following reference numbers , you will get the ampoules you want.

For packets of 10 and multiples thereof — 16199653

For packets of 100 — not available at the moment

This is correct for September 2021 . Can be out of stock sometimes , but only for a day or two "

If a site is only in German , use Google Chrome or a translation app.

Hevert also have B12 depot ( Hydroxocobalamin) ampoules They are 1mg x 2ml though -same strength but more saline Also more expensive

Pascoe make 1.5mg x 1 ml ampoules .

Needles, syringes ,swabs and yellow sharps disposal boxes are obtainable from-

medisave.co.uk

exchangesupplies.org. ( Needles and syringes)

Intra-muscular injection needles 25G x 1inch

Sub-cutaneous injection needles 30G x 1/2 inch

Withdrawing needles 21G x 1 1/2 inches.

Blunt ended needles with or without a filter are also obtainable.( to withdraw the solution out of the ampoule ) using the injection needle for this will make it blunt (Ouch!)

[Hidden in reply to wedgewood]

Thank you so much, this is great!

[Hidden]

I think alot depends on how you plan to self administer

- How often do you plan to inject B12?

- Will you do loading doses to start off with?

- Which muscles will you use?

- For how long will you continue?

For example, 1ml is the max your deltoids can handle. 2ml is OK in the legs, but regular injections may be too much for the muscles to handle.

[FlipperTD]

Scientist, not medic.

You say you've been diagnosed as B12 deficient. There's lots of very good advice on here on how to address this with self-injection. Whilst there's absolutely no doubt that injections will address this issue, there is also the possibility that oral replacement can helpproviding the dose is high enough.

It's important to address the loading doses by injection, and also to have them in the GP surgery.

It might be worth considering the oral route once you're B12-replete. It might not help you, but it just might.

Repeated measurement of B12 levels is worthless once you've started injections, and at best can be confusing. As for idiots who suggest that it's possible to overdose on B12, well, show us the evidence, folks!

Good luck.

[Hidden in reply to FlipperTD]

Thanks very much. G.P. is useless, as usual though.

[FlipperTD in reply to Hidden]

Dear Emma-Peel

Good luck on this one. It's complicated so it's hardly surprising that our medical colleagues don't have every answer to every problem. The wise ones admit that.

I always advise folks to follow their GP's advice, but if you're not happy with that, perhaps it's time to consider a change.

The human body is awfully complex, and the interactions are considerable. If you are B12 deficient then that needs addressing, and needs addressing without delay. As I said before, good luck.

B12 tablets won't do any harm. Any excess will simply be 'flushed away'.

[Hidden in reply to FlipperTD]

I can't change, we're lumbered with no choice in this country because we're allocated doctors based on where we live. It's ridiculous. As for it being complicated, they're supposed to be trained professionals. The lack of care for thyroid patients is shocking. Thanks anyway.

[FlipperTD in reply to Hidden]

Sorry to hear of your difficulties. But at least you're doing something! Good luck.

[Sleepybunny]

Hi,

What does GP think has caused your B12 deficiency?

This could affect what treatment you receive from GP.

[Hidden in reply to Sleepybunny]

The G.P. doesn't care, I'm hypothyroid and address that myself, too.