Pernicious Anaemia Society
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Going private for b12 injections

My mum was diagnosed with P.A last summer since then it's been downhill all the way! The doctors will NOT have it that she needs injections more frequently than 8 weeks despite her, literally, becoming a liability to herself. I dread to think what would have to happen for them to realise we have a point and to take us seriously. We have told them until we are blue in the face (that is if we get to see/speak to the doctor - got to get past the receptionist first!!) So anyway we are now looking at the paying privately option. Can anyone recommend anyone in the Fareham/Hampshire area that doesn't charge silly money. Any advice gratefully received, still new to this disease! Thank you

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You will find that there are many people on this forum who have the same experience as you - me for one.. You can try going to a private hospital like the Nuffield and talking to a GP there . I do not know how much it would cost , but it's not cheap. . Or do as I do, and many others on this forum, and self-inject . This is the cheapest option obviously . I have been doing just that for 18 months, and it has changed my life . Hydroxocobalamin can be obtained at very good reliable German online pharmacies at a very reasonable cost . Needles and syringes can be obtained in UK . An injection need not cost you more than £1.00 in all , if you buy in bulk . You can watch videos on U tube to see the best way to inject (into the thigh) I know it sounds daunting , but it's important to get enough B12 asap . also important to get enough folic acid / folate . Think about it and get back to us here if you need help in ordering what you need. You would be surprised how quickly it becomes routine and totally painless., and , best of all the improvements in health and well-being.

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Hi Wedgewood, thank you for replying. Yes it does appear that there are lots and lots of people in the same boat which I find disgusting. We have talked about the self injecting but neither myself or my sister are 100% confident about administering. My sister has a friend who is a nurse so we may ask her. Please can you let me know where you buy your supplies from. Do you still get injections from the doctors or have you given up on that, also did you have to tell your doctor that you were going to be doing it yourself?

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Hi!

So know what you mean and sympathise. I SI daily and my Dad needs more treatment than I can get for him.

For more information, including sources of supplies you could look up my profile by double clicking on my name and see my post "My Experiences".

Good luck!

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Having a nurse show you how to do it is the way to go. I self inject and admit that I was terrified at first, but a nurse friend sowed me how. Now I don't even think about it...so easy and doesn't hurt at all. I still go and have my 3 monthly injections to stay on the system , and have not told my GP, but did tell my consultant. He was perfectly OK with it, saying that I could not overdose as I would eliminate any excess .

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You cannot imagine how nervous I was ( and I am 80 years old !) I had a large gin and tonic the first time!

It honestly becomes routine I did tell my doctor who disapproved.said I would get adicted and would want more and more ! I don't bother with the doctor anymore . In a way I wish people would say that they are supplementing with injections . People who have one injection every 3 months at the surgery , and self inject , lead the doctors to think that is sufficient .when it isn't .

Google " versandapo.de in English" and in the search box type" vitamin B12 depot "then up will come the choices of ampoule . I use Rotexmedica 1mg/1ml . You can buy 100 or multiples of 10 ampoules. Much cheaper to buy 100 and the postage is the same no matter how many you order . Always enlarge the carton to read the type of B12 . You want Hydroxocobalamin . Don't forget to take folate as well .

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I agree with you wedgewood - gps think we are okay when in fact we are si... however, my experience was when I told my gp she sent me out of the room - she was in a rage. new doctor now, and keeping shtum.

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Excuse me for my ignorance but how do you take the folate and is that folic acid? Can we just buy that off the shelf? Thanks

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You get natural B9 (folate ) in green leafy vegetables and peas . Folic acid (also B9 ) is the artificial version which you can buy in health food shops , supermarkets and from Amazon .

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That's very encouraging to read. I have bought ten ampoules and am friendly with an ex nurse. I will arrange a few with her first. Are ampoules ok for a while if kept out of light ?

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Yes ampoules are fine kept at room temperature ( unless you live in a tropical country ) but must be kept in the dark. When newly purchased they have a lengthy use by date printed on each ampoule .

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Thank you

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Hi wedgewood, I would like help ordering what I need. I may also have a nurse willing to show me how to SI. Thanks

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To order Hydroxocobalamin online Google " versandapo.de in English " yes ,type out all that and you will get the site translated for you . Then in the search box type "Vitamin B12 depot " then up will come the choices of B12 ampoules. You can get 1mg/1ml or 1mg/2ml -I use Rotexmedica 1mg/1ml you can buy 100 ampoules( cheapest option ) or multiples of 10 . Whatever you buy ,the Postage is the same . Prices are in Euros . These are the very ampoules which are widely used in U.K. doctors surgeries . Always enlarge the packet to make sure that you get Hydroxocobalamin, as Cynocobalamin is supposed to be inferior ( I don't know if this is true , but the UK has stopped using it for some years. )

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What about needles and sharps box etc? Thank you.

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I get all the other stuff on Amazon ! No problem at all -Syringe 1ml -withdrawing needle 21 gauge and 1 1/2 " inches long ( to draw liquid out of ampoule , which can bluntbthe needle ) for injecting 25 gauge (thinnest possible) and 1" long . Sharps box from same source and also.swabs .

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Thank you, I know this sounds like a strange question, but here goes: have you really noticed a big change in your health and energy levels. How often are you sI.?

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Yes a huge huge improvement I'm back to normal . A lot depends on how long one has been deficient I think . Also we all vary so much . You see there's been no good research done into PA / B12 deficiency . We are doing it ourselves really . I self inject once a week now but it was more often previously . It's all guess work really . But I never allow my symptoms to start returning . It's too awful a memory . There is no interest in the medical profession in PA . Big pharma is only interested in drugs that they can patent . There are the big bucks ! Vitamins are unpatentable .,You can draw your own conclusions . I'll say no more !

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Hi wedgewood, I've just order B12 ampules from Versandapo. I'm now looking at needles Amazon. I really don't know what I'm doing. Can you send me a link or info on exactly which syringes/needles I need . I'm gonna do subQ. Thank you so much.

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I'm so sorry . I use IM I don't know what you need for sub Q . Put out a general alert and someone will let you know . Best wishes

I've heard people talk about a sort of injection pen for sub Q

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Hi, do you do your own IM jab or got someone to do it for you?

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Sorry about delay in replying. I do my own SI . I inject into my thigh, alternating between legs . It should be into the outside middle third portion of the thigh , in order to get the muscle . I watched some videos on u tube before I did the first one . Of course I was scared to death the first time . After 18 months , I don't turn a hair !And neither will you !

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I buy needles etc from Medisave UK Ltd great to deal with and pretty quick.

For SC I use SYR285 - BD Plastipak Syringes 2ml x 100 - 1

ND304 - BD Microlance 3 Needles Yellow 30g x 0.5" x 100 - 1

AN-2138R - Terumo AGANI Needle 21G Green x 1.5" x 100 - 1

Hydoxycobalamin from Verso as others have mentioned.

An ampoule snapper is a useful little tool too ebay.co.uk/itm/Glass-Ampoul...

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Sorry to butt in - what's subQ and IM? I'm on my loading dose at the moment but imagining I'll have to self inject after that (given the three month thing).

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SubQ refers to the Sub Cutaneous injection into the skin. IM is intra -muscular - so deeper ....

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Thanks, Marz! So which is best? What are the pros and cons? I'm terrified at the thought of self injecting, so SubQ sounds like a better option to me. Any advice gratefully received!

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I am not an expert 😊 I do self inject IM into my thigh. I have read that IM lasts longer in the body. I do not feel the needle going in - just the liquid at times. Keep it warm and give yourself plenty of time and RELAX 😊

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Thank you!

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Hi März I have just ordered B12 ampoule and looking for needles.... would these be any good?

amazon.de/Einmalspritzen-Kanüle-Tuberculinspritzen-einzeln-Romed/dp/B01BRTS1SA/ref=sr_1_9?ie=UTF8&qid=1509289094&sr=8-9&keywords=1ml+luer+syringes

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Sorry link didn't work for me :-(

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How do I know how much folic acid I need and i can't make out which syringes to buy on Amazon. Can u give me precise details please? Many thanks

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My question to those who buy online and self inject is, where/how do you dispose of your needles/sharps box?

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Most chemists will take your sharps box when full . You can always find out by googling the question for your area . About 90 % of the chemists where I live accept them , including Boots .

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Thank you, unfortunately where I live in Hampshire it appears to be a big issue. No one will take them! The only way we can get them collected is with a GP referral. It seems crazy that no one will help someone trying to dispose of clinical waste responsibly.

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That is really ridiculous ! That will only encourage irresponsible people ( Drug addicts spring to mind) to dispose of their needles in a dangerous way , but perhaps they are catered for ...... . Can't think what to suggest . Perhaps if you ever go further afield visiting friends etc, google to find out chemists who do take the boxes there ! What about sending them anonymously by post to a local chemist ? I know that the local 'civic amenity sites' ( tips or dumps in common parlance) do not take sharps boxes. Hope you solve this problem which shouldn't exist .

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Of course, it would be unethical, immoral and careless to wrap your sharps container, plaster it with clear warning labels, then re-wrap in a second layer and post to the council healthcare waste department. Which is a shame as, if they were inundated with such parcels, they might feel the need to make alternative arrangements.

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My council will collect for a fee but I need GP letter to access that service.

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Hi there, not sure if you'll get this as your answer was a year ago. I'm looking at getting the hydroxocobalamin from that German pharmacy website but it doesn't seem to be on there. Have you been on recently? Am I missing something?

I'd be very grateful if you could help.

Best wishes

Andrea

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I don’t remember what I wrote a year ago! But the German online pharmacy I use is still in operation , but it has changed hands , and doesn’t have a site in English anymore . It offers the cheapest Hydroxocobalamin ampoules , (Rotexmedica 1mg x 1ml) and for that reason I suppose , keeps running out of stock . B12 injections have unfortunately become very fashionable at beauty clinics for weight loss ?! I’m refering to versandapo.de . If you google that you will get onto it, albeit in German . If your German is not up,to it , try getting the google Chrome app , which will translate it for you . You need to enter the full Internet address not just versandapo.de . Another possibility is mycare.de which does have a site in English , but the ampoules are dearer and the shipping very expensive . You can also try Amazon.de —- They usually have both sorts of ampoules that I’ve used .The Rotexmedica depot ( that’s the Hydroxocobalamin 1mg x1ml and Hevert which is 1mg x 2ml ampoule) I choose 1mg x 1ml as it’s quicker to inject . . They also have a site in English and the shipping is reasonable .

It’s worrying isn’t it when things change ?. I’m already worrying about what will happen after Brexit . ....... Best of luck and good wishes .

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Hi Kazj0302 do you have any idea what your mother's Folate level is as this helps process the B12 she is having injected?

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Hi clivealive, tks for your reply. I only know that the level is low.

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"We have told them until we are blue in the face"

Have you and your mum considered writing a letter to GP outlining concerns, symptoms, extracts from relevant UK b12 documents? My understanding is that letters to GPs have to be filed with medicla records so are a record of issues being raised.

link about writing letters to GP about B12.

b12deficiency.info/b12-writ...

UK b12 treatment

I assume that as she is having injections every 8 weeks, she has neurological symptoms. In UK it's maintenance injections every 3 months for someone with b12 deficiency/PA who does not have neuro symptoms and every 2 months for someone who does have neuro symptoms.

Link to PAS Symptoms Checklist

pernicious-anaemia-society....

When she was first diagnosed with PA what loading injections did she get?

In UK, for those without neuro symptoms it's 6 injections over 2 weeks.

For those with neuro symptoms it's a loading injection every other day for as long as symptoms continue to get better,

I was wondering if she had had the necessary loading injections?

Info on UK B12 treatment

1) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box.

I'd recommend reading the whole BSH Cobalamin document.

Link to flowchart in BSH cobalamin and Folate guidelines

stichtingb12tekort.nl/weten...

2) BNF (British National Formulary) Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

"I only know that the level is low."

Your mum is entitled to get copies of all her blood test results. GPs can only refuse if they feel giving the results could cause harm to the patient.

nhs.uk/NHSEngland/thenhs/re...

I learnt to always get copies after finding out that I had some abnormal results after being told everything was "normal".

PAS (Pernicious Anaemia society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Some people on the forum join the PAS. They are helpful and sympathetic and in some cases can intervene on behalf of members. There are several local PAS support groups in UK.

pernicious-anaemia-society....

Pinned posts

Lots of useful info in pinned posts. I found fbirder 's summary useful, link to summary in third pinned post. Lots of quotes from mainly UK B12 documents.

Sublingual b12

Some people on the forum get good results from using sublingual B12, placed under the tongue. I use these, but find I get a better response from injections.

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Hi I'm in Warsash-having the same problem - I'm now looking at SI. I was on one jab every month, then my Doctor at the time very understanding retired. Now new Doc is a nightmare and has reduced my jabs to every 8 weeks, I'm now struggling.

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Don't struggle any more...just do it. So easy and quick. See my reply above. It is also useful to be able to do it yourself when traveling too.

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You could check if there is a Spire Hospital near you. I think they are a bit cheaper than Bupa. But the best would be Wedgewood's - get your nurse friend to show you how to self inject.

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I really need to get this sorted ASAP. My mum fell tonight and knocked her head. All of this because of P.A.( she is v unsteady on her feet and not thinking straight came down stairs carrying a blanket, stepped on the blanket and away she went!) She has another couple of weeks to go before the NHS deems that she is worthy of having another injection. I had to phone 111 as she hit her head and the doc that phoned back asked why we weren't getting more frequent injections and said how short sighted it was of them to not spend the money on this little jab when they could be forking out a hell of a lot more on a broken hip . They just don't seem to look at the bigger picture and it is so wrong that people are having to make their own arrangements in order to feel ok. Being new to this I am very much at the anger/disbelief stage!!!!

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Hi Kazj0302

Have you considered ringing the PAS(Pernicious Anaemia Society)? I'm sure they would be interested in your mum's story.

The PAS are a good source of information about PA/B12 deficiency.

PAS tel no +44 (0)1656 769 717

PAS office open from 8am till 2pm every day except Sundays. There is an answerphone.

There may be stories on Martyn Hooper's blog that are relevant to you and your mum eg of older people affected by PA.

martynhooper.com/

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Thanks I will do that

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I can't believe people are having this much trouble ftom their Drs. about B12 injections. In the blood work they should run tests for instrinsic factor antibodies thry run so many GD tests. I have been self injecting for over a year. I inject in my deltoid muscle...first time was hard but now i don't feel it. Sometimes Drs. Do more harm than good. Find one that will listen.

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You can buy B12 online cheap and watch youtube videos on how to inject B12.

That is the best option, the first time self injecting is hard but after that it's easy

You may need 1 1ml injection a month and take some Folic acid as they work together.

I inject in the thigh after watching YouTube videos and it's very easy.

Paying to get an injection is silly prices.

Google this,

" versandapo.de in English "

Search "B12 depo"

It's a German company and is very good. Fast delivery. It will cost about £50 for 100 x 1ml B12, or you can pay roughly the same amount to get 1 or 2 injections.

You can also buy smaller amounts.

1 injection per month will do the job.

Wish you well.

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I take my folic acid in a multi vitamin/ mineral capsule . If you take yours separately , take 400 mcg per day . That is 100% of the daily recommended dose . On Amazon uk , search for 1ml luer syringes if your ampoules of B12 are also 1ml . Search for 2 ml syringes if your ampoules are 2ml . I would buy 100 at a time . It works out so much cheaper ! Best wishes .

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Hi wedgewood,

Do you have direct link to IM syringes you buy please? As well as everything else you need for IM injections? I would not like to make any mistake when ordering it please :-)

Concentration of my B12 will be 1mg/mL.

I am planning to self inject either to deltoid or thigh muscle. I am not sure whether any in particular would be better?

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Kaz i just read the answers they same questions i asked any luck.anyone think it gold dust so unfair

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