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Pernicious Anaemia Society
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About to order B12

This is my first post, though I've been a member for a while. For the last 5 years my GP has administered 12 weekly injections , however last year I was called in to the surgery and told they had been directed to transfer all patients who's B12 readings were just slightly abnormal onto tablets!! I was dismayed but didn't know how to respond. My GP is a lovely woman but said....'well I just presumed you wouldn't want to be having injections for the rest of your life ' . My reply was ... surely that's the point, we do need them for life. Anyway because I'm not very forceful I agreed to go 6 months without then get my bloods checked. At the end of this period I was in a dreadful state, and lo and behold .... my bloods were in the normal range! ( my GP did give me an injection tho) I then did a further 8 months....bloods again...they say are normal and wouldn't treat someone with normal results. It is now a year since my last injection and I'm pretty much struggling on all levels with all symptoms. The most annoying is my pins and needles and aching joints. I push on through the fatigue, but that is now getting so bad my husband and family are pushing me to self inject ! Well my mum is a nurse so will do it for me! Sorry you have probably heard all this before....my main reason for posting is for help on ordering my stuff. I have in my basket at the German site 100x1ml individual injections. I presume if I also get single use syringes I can simply load that from the ampoules and inject ...like GP does? How often should I inject? I've noticed a huge variance with you all...some every day/ weekly / monthly.??

Thanks for listening and your advice....😌

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Have you had your active b12 tested? As the total b12 serum can have up to 80% inactive b12 in the result I'm sure I read. Which means that your test results can not be very accurate.

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I don't know πŸ€—..... my intrinsic factor was negative 5 years ago. Last year they said it was a full blood panel test? I was low in folic ... they suggested a multi-vitamin.

Thanks for replying so quickly .... I suppose I should look into it.

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Patients who have PA can usually only benefit from injections, and they have to be administered for life .Some people do benefit from sub-lingual lozenges and nasal sprays . But not straightforward tablets . You can buy 100 ampoules at a reasonable price , but would you need as many as that ? I do because I find I have to inject weekly I found this out by trial and error . The ampoules usually have a shelf life of 2 years at least. We're you keeping well on the 3 monthly regime ? After a break of a year you will need some loading doses - say one every other day until there is no improvement in your symptoms . Then try 3 monthly . If you start to deteriorate before the 3 months are up, then inject earlier . It would do no harm to order 100 as they are much cheaper then . You know that you cannot overdose on B12 , so there's nothing to worry about . Is so reassuring to have a good supply . I f you buy in 10s you still have to pay 8Euros P&P the same as for 100 ! Best wishes !

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I live in the uk and have a gp that won't give me more regular jabs. I feel very unwell all the time. Please can someone tell me a safe way for me to order online b12 and syringes for me to self inject I simply cannot live my life like this

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Dear Skipping . I do empathise . I've been there ,where you are now , and it is horrifying . I still find it hard to believe that our doctors are so ignorant and cruel . I have my ideas as to why this happens but I won't go into it here . You can improve your life no end if you self inject . And it it relatively cheap . buying in bulk, about Β£1 a shot !

I buy my ampoules of B12 from

versandapo.de in english

You will get straight through to their site in English . Otherwise if it comes up in German , scroll to the bottom and click on the Union Jack !

a German online chemist, very professional and reliable .

You will need to register for your first purchase

I use 1mg x 1ml ampoules . You can search for vitamin B12 , and all their b12 products will come up . OR Search for ref no PZN 3862305 for 100 ampoules costing 55 euros.

Or PZN 3862297 for 10 ampoules costing 8 euros , or multiples thereof .

The courier charges are 8 euros whatever you buy .

You can pay with a card or PayPal . Takes about 4 days .

All other stuff you can buy in UK at Medicare uk .

You need 2 needles for each injection .

Withdrawing needle-- I use

Terumo Agani 21G x 1 1/2 inch

Injection needle

Terumo Agani 25G x 1 inch ( nice and fine !)

Syringes , Medicare swabs and a yellow sharps disposal box .

Look online for videos demonstrating injecting into thigh .

Keep a record of injections .

You cannot overdose on B12 , I would have a loading dose to start one every day for 2 weeks at least . -Then see how you get on .

Yes you will be nervous the first time . I had a large gin and tonic the first time . Perhaps have a friend around .. I've been doing. S.I .for 2 years now .It has changed my life ' Don't forget you need plenty of folate ( green leafy veg , peas etc ) or folic acid supplements together with B12 . They act together . VERY IMPORTANT! Just relax . A new life is on its way. Don't be impatient . It might take time . We are all different . Very best wishes

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wedgewood any idea if the Brexit is going to adversely affect buying B12 from Germany in future?

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Apart from cost (i.e. pound against euro), the biggest issue seems likely to be customs. If there is a split and all items need to go through customs, we can expect delays and possibly extra cost. It cannot be assumed that the existing Β£15 limit for non-EU imports would apply to UK imports from the EU. Anything could happen.

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This is a big concern.

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I personally don't know 100% , but I don't think it will . All parcels will have to have a customs declaration form stuck on , like it was before we joined the EU .But it's only a vitamin for goodness sake ! We are affected a bit already by the drop in sterling against the Euro . I'm keeping my fingers crossed . As Brexit is going to take some time , maybe we will have made some progress with getting better treatment or that B12 ampoules will be obtainable over the counter here, by the time that we have left EU !

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And yes your.B12 would have been in the normal range if you were taking B12 tablets . The important thing is that your symptoms need treating asap !

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Wedgwood ! Thankyou so much for replying...I cannot believe the kindness of people responding so quickly! At one point in my 5 year history a kind nurse put me up to every 8 week because she recognized my symptoms deteriorated ... when she retired ..the GP put me back up to 12 weeks....saying there was absolutely no advantage 😑. Incidentally they wouldn't give me the loading doses right at the beginning either! This is despite knowing my father has PA!!!

It is comforting to read everyone else seems to be struggling to get somewhere with the medical profession ( I mean that in the nicest possible way.... it's awful so many of you live life frustrated and ill πŸ˜ͺ)

I think I will order the 100 .... do a loading period, then perhaps monthly. See how it goes. My dad could probably benefit with more too....his GP will only administer 12 weekly!!

Thanks for a very informative reply...much appreciated !!

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How often should you inject?

As often as you need to keep the symptoms at bay, and no more often than that.

But how do you find that frequency?

How were you doing on 12 weekly jabs? If you were feeling fine then there's no real need to inject more frequently. Otherwise, you will need to experiment.

First you need to keep track of your symptoms - especially those that respond best to your injections. For me it was fatigue - I felt totally wrecked a few days after a jab was due.

I started monitoring with jabs 4 weeks apart. It was obvious that my fatigue was coming back after around 10 days. So I moved to fortnightly jabs - which still weren't enough. Weekly worked OK - most of the time. But sometimes I'd feel rough on the due date, and sometimes I forgot.

Now I inject every Monday and Thursday and that seems to work well.

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Thanks fbirder! I think I will see how it goes and experiment....my husband is convinced I need it every few weeks, but that I'm so ' used' to feeling how I do I don't realize until my symptoms mean I can't function! In the past I would just push on until I literally ground to a halt then try and sneak my injection a bit earlier!! In an average 3 month period I would feel much like my normal self for two weeks ( tho seemed to take a week after injection to feel improvement ) after injection then pretty rubbish ever after!!! Suppose that says it all really.

Thanks for help....sometimes just writing it down helps to clarify the reality!

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Yes, I've found that others can be a better judge of when I need a jab than I am. Before the twice weekly routine I'd often hear "When did you have your last injection?" If I were a day or two late.

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It's helpful to keep a record of your injections. I'm assuming you will use your thighs . Just alternate . Your quality of life will improve no end when you find the right dosage .

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are you a member of the PAS?

pernicious-anaemia-society....

Assuming that you are based in the UK I'm appalled by what has happened to you - particularly as the treatment being offered, whilst it may be effective for some people and is licensed in other countries, isn't licensed in the UK. Appalled as well because this treatment is obviously being applied to others and sure that the PAS would be interested to know about the practices at the surgery and interested in getting to the bottom of why this has happened. However, they may need to be dealing with members in order to be able to intervene.

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Hi Gambit, yes in U.K. My GP told me I hadn't been singled out, the nurse was given a list of patients they felt should be moved on to tablets. 😳. There are several doctors in the practice , the one I try to see now is a nice woman and seemed a bit bamboozled by it all! Didn't change anything though! I presumed this is getting rolled out across U.K. ?

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occasionally things crop up in specific areas around use of tablets. There was a whole thing in Cornwall a couple of years ago. As I say, it isn't a licensed treatment and it sounds as if it is probably something that is going on in a specific practice or area and I am sure that the PAS would be really interested to have some details.

pernicious-anaemia-society....

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Wedgwood's order details are almost identical to mine, a real how-to, order away & get started! Use the frequency that suits you - in every other day for more than a year. Be warned though - if you're cross now about how you've been (not) treated, wait til you feel better, you will be Livid! That something so simple & cheap can transform life & yet denied to us... Grrrrr

Good luck.

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* I'm not in above - auto correct!

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You can edit your own posts and responses!

support.healthunlocked.com/...

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Yes!! Ordered yesterday.... the site works exactly as Wedgewood describes. You need a PayPal account so it's super easy. Today I'm going to order the Syringes. I couldn't have done this... even taken the decision to just get on with it , if it wasn't for the advice on this forum and the great advice from you guys. So thank you very much for taking the time to respond. X

Skipping 😟 My heart goes out to you! It's hard to describe how demoralizing it is to get nowhere with doctors. Although desperate for my injection, I dreaded going to the doctors because the nurse would give a little 'tut' and say 'you can't keep doing this , trying to get it earlier!, OR if I managed to go slightly longer, a little smile and 'oh well you seem to have managed this time'. I would go home and cry. All they kept saying is evidence shows anymore than 3 months is unecessary...makes me want to scream! I know it's a bit pathetic, but battling it out every 3 months and feeling like my surgery thinks I'm just putting it on, ON TOP of feeling so ill for the majority of the time, has just nearly finished me off. I can't do it anymore !! Hence my decision to bite the bullet and get ordering. I will let you know how I get on! Hope you get sorted and take care xx

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Spagettihoop

Please see me recent post "Trouble with The Medical Profession". Blood levels of B12 are NO MEANINGFUL GUIDE to your requirement for B12. None!! The medical profession are wrong to use that as a yardstick to measure adequacy. My post sets it out in some detail AND contains a paper with scientific references that prove beyond reasonable doubt that this is the case. NICE are ignoring the science (probably for cost reasons).

You may have insurmountable difficulties (as I did for ,my wife) getting the medical profession to function properly. They often will not transgress NICE guidlines regardless of patient symptoms and the degeneration of their health. At least this has been my experience and it sounds like yours too.

I have been injecting my wife with 1mg of methylcobolamin every month for years. This allows her to function properly and lead a normal life. If you choose to do this don't forget to take folate. The amount of B12 you need may vary. Dose to remove symptoms. Realise that YOU are ultimately responsible for your health - not your doctor - because you have to live with the consequences, not her. Treat the symptoms, not numbers on a piece of paper. You cannot overdose B12 no matter how much you take.

I started my wife off with 1mg shot every week for a coupe of months and then eased it out to one a fortnight when she started to feel better. I gradually eased it out to three weekly and then a month and left it at that rate. However - it would not be good to replace NICE guidelines with another set of guidelines. You need to treat to the symptoms. As you are obviously in a very deficient state you may choose to have an initial loading dose of - say - a shot every day for 10 days, then rake it out to a week etc as above. You can vary this depending on how you feel.

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Aw thanks Jonathan! It was actually reading that post of yours that galvanized me into action yesterday ☺️

Made me realize too, it's not just about me! This affects my husband too...like you he is amazing and it will mean the world to him if I can get my life back ! Don't get me wrong I have a really busy life with work, travel and I also help care for my disabled father. But because I do all of it basically in a fog and walking through treacle......it makes the people I'm with feel bad, guilty and worried to see me struggle on.

But this feed has given me a boost...I'm feeling much more positive today and back in control!!

Now did someone mention Gin & Tonic

Oh....it's only 10:30......that ll be another coffee then 😬

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In the case of low numbers I would have to agree with you. High numbers are a different matter. They can mean a number of things. Defective liver and various diseases or an inactive form of B12. However - getting a doctor to treat a reading of 60pmol/L is NOT a problem. The problems arise when the readings are within or above the reference range and the patient is still symptomatic. That is the thrust of what I am trying to overcome. I asked the GP for MMA and Homocystein tests. This has the potential to confirm B12 inadequacy. I was told that they cannot be ordered by a GP. Furthermore as her B12 levels were within range that my wife could not be referred to a specialist who might be able to order these test. Perhaps you can now see why I lost patience with the NHS and sorted the problem myself.

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I'm so sorry I gave you the wrong address for the site for needles etc It is

www. medisave .co.uk Many apologies !!!!

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I'm so sorry you've had problems getting your injections but glad your mum will inject. Personally, as you've been without for long periods and now have pins and needles, I would start off by injecting 'every other day until no improvement' as per the BNF advice for neurological symptoms, to ensure you don't have permanent damage.

If you read the Dutch pinned posts here, it is essential to have early and adequate treatment for good results.

I order B12 from: mycare.de/en#

The site is easy to use - just press Union Jack for translation

Search for 'hydroxocobalamin' and select: B12 DEPOT ROTEXMEDICA (10x1ml). Pay through PayPal.

Syringes, needles, sterile wipes and Sharps boxes from Medisave:

medisave.co.uk/instantsearc...

BD Plastipak 2ml syringes

TErumo Agani 21G x 1 1/2 " green needles to draw the solution up into the syringe

BD Microlance 23g x 1.25 "Blue needles for the IM injection

or

BD Microlance 26G x 3/8" Brown needles for sub cut

..........,

I hope all goes well for you now.

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"they wouldn't give me the loading doses right at the beginning either! This is despite knowing my father has PA!!! "

Having a blood relative with PA is a risk factor for developing PA

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

"my intrinsic factor was negative 5 years ago"

Is your GP aware that it is possible to have Antibody Negative Pernicious Anaemia (PA where Intrinsic Factor Antibody IFA test is negative)?

Flowchart below from BSH Cobalamin and Folate Guidelines outlines when PA and Antibody Negative PA can be diagnosed in the UK.

stichtingb12tekort.nl/weten...

My understanding of the flowchart (I'm not a medic) is that if someone is symptomatic for B12 deficiency, with all other possible causes of B12 deficiency excluded and they respond to B12 treatment, they can be diagnosed with PA if IFA test positive and Antibody Negative PA if IFA test negative.

Martyn Hooper, the chair of the PAS, tested negative more than once on IFA test before testing positive.

If you're in UK, I'd recommend reading the whole BSH Cobalamin and Folate Guidelines. I gave my GPs a copy.

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

If you suspect PA is likely in your case, it may be worth joining PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

There may be stories relevant to you on Martyn Hooper's blog about PA and B12 issues.

martynhooper.com/

Link about writing to GPs about B12 deficiency (mainly UK info)

b12deficiency.info/b12-writ...

Point 8 is about GPs stopping injections and replacing with oral tablets.

Point 1 is about undertreatment of B12 deficiency with neuro symptoms.

It seems such a shame that so many have to resort to self-treatment.

"My dad could probably benefit with more too....his GP will only administer 12 weekly!!"

Does your dad have neurological symptoms eg tinnitus, tingling, pins and needles, balance problems, memory problems? Are you in UK?

If yes to neuro symptoms, in UK, people with B12 deficiency with neuros ymptoms are supposed to get a loading injection every other day for as long as symptoms continue to get better then injections every 2 months.

Lists of Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Uk b12 treatment

BNF Chapter 9 Section 1.2

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

cks.nice.org.uk/anaemia-b12...

UK GPs will have a copy of BNF on desk or bookshelf

Uk treatment info also in BSH CObalamina nd Folate Guidelines, about a quarter through document.

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