Struggling with 12 weekly B12 injections

[Nat_8]

Can my doctor give me my B12 jab more frequently than every 12 weeks? Every time my B12 jab is due, I take really sick just before it. I get numbness in my feet, recurrent colds and chest infections and feel flu like. It starts with extreme tiredness and the inability to walk any distance without becoming very breathless. I also get a deep tightening gnawing feeling in my chest. Then comes the sore throat, cough and aching joints. Last time I ended up on antibiotics, steroids and inhalers and feel like these frequent illnesses are starting to take over my life :-(. I have taken up trying running over the last year and wonder if my body is using my B12 up quicker due to the increase in exercise? I am not able to progress very far with my running journey because every 10-12 weeks I am getting really sick. I am sick again at the moment and am getting my jab next week. One time I was 3 days early for my 12 weekly jab and the nurse really told me off and told me I should not be there before the 12 weeks exactly. I felt humiliated and it has put me off questioning the doctor. I am going to make an appointment to see him next week as I am feeling really down with these recurrent chest infections and want to know the facts before I go. Any information on any one else's experience or on how regular I can get my jabs would be greatly appreciated. Many thanks

[RosieClark]

I've found this forum really fantastic - I found out I had a low b12 in January this year - like you I had loads of symptoms including chest infections and extreme fatigue

After a lot of research I now self inject - I travel a lot so this is best for me

I KNOW I could not possibly last more than 1 week without symptoms returning

Sounds as though you need far more frequent b12 injections

It's difficult I know to confront those in the Nhs that don't understand - my advice is to keep on and on until you get the treatment you deserve

BE BRAVE - you have the support of this forum behind you

[Nat_8 in reply to RosieClark]

Thank you Rosie. I will let you know how I get on. Am currently wide awake, unable to sleep and coughing continuously even though I am exhausted. It's great to have this forum with people who too are sufferers and understand what each other are going through

[wedgewood]

You must try to get your injections more often than 3 monthly . If you have any neurological symptoms ( tingling , numbness) you should be having an injection every 2 months . I had no luck with my doctor , but some GPs are knowledgeable about PA . I had to resort to self injection to keep myself well. That's a possibility if your doctor won't help . But do try to get him/ her to agree to more frequent injections . If you are a member of PAS , they will intervene for you , often with success.

If it comes to S.I. , it is very cheap if you buy in bulk . Cost - only about £1.00 a shot . ( includes needles , syringes and ampoules of B12 .

Come back here if you need more help . We are your friends .

[Nat_8 in reply to wedgewood]

Thank you. I had been googling the option of buying online but was worried in case it did me any harm. I will come back to you for more info if I get no joy from GP. Knowing where other people get it from and knowing they are okay is a big relief

[Gambit62 Administrator]

assuming that you are based in the UK.

B12 is only licensed in the UK for use at frequency of 8 weeks or more - this is just a quirk of the licensing procedures which mean that the manufacturer needs to apply for the licence and they just haven't bothered to apply for more frequent dosing.

in other EU countries the frequency for maintenance dose with hydroxo is 1 month.

there are no issues with toxicity with more frequent doses but the fact that there is a licensing restriction can make GPs very reluctant to provide it more frequently than 8 weeks even though they are supposed to be using their professional judgement in treating ... However most would rather not risk anything that is outside the norm, even though there is actually no scientific evidence supporting 2 monthly for maintenance.

Have you tried supplementing with very high dose oral/sublinguals - some people find it effective but it doesn't work for everyone?

nurse obviously had poor people skills if she made you feel humiliated - and quite likely very little knowledge of B12 beyond licencing regs.

[Nat_8 in reply to Gambit62]

Hi. I have tried the sublingual spray this time around from Holland and Barrett but it hasn't made any difference. I have still ended up really sick. I bought it to try and see if I could supplement myself between jabs. Are there better ones out there?

[Gambit62 Administrator in reply to Nat_8]

- there is no guarantee that any sublinguals etc will work for you - they work for some people but not for everyone. You could try using it more frequently than - though if it contains B6 as well I'd be a bit wary of doing that as you can overdose on B6.

I buy my supplies from a firm called detox people

- am guessing that the spray is cyanocobalamin. you could try other forms of B12 to see if those work better - or you could try high dose sublingual tabs.

but really you need to see your GP and point out that maintenance shots should be every 8 weeks if you have neurological symptoms per NICE and BCSH guidelines. The numbness you mentioned in your post would count as neurological symptoms.

links to guidelines

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

onlinelibrary.wiley.com/doi...

[clivealive Forum Support]

Hi Nat_8 you may need to get your Folate level tested as Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

If you are having neurological symptoms the N.I.C.E Guidelines say that the doctor should "administer hydroxocobalamin 1 mg intramuscularly every 2 months"

For the full guidance click on the link below, then on "Scenario: Management" and scroll down.

google.co.uk/url?sa=t&rct=j...

Do you have a diagnosis of Pernicious Anaemia?

I had the same "fight" as you in getting my "one size fits all" doctor to increase the frequency of my B12 injections.

Make a list of your symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and (perhaps) even restart you on loading doses "until there is no further improvement".

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had P.A. for over 45 years and know what a struggle it is at times.

Don't forget to ask about your Folate.

​I wish you well and hope you get the treatment you need and deserve.

[Nat_8 in reply to clivealive]

Thank you Clive. Yes, I was diagnosed with pernicious anaemia a couple of years ago. The first year I was getting sick, I just put it down to coincidence and bad luck but it is only recently that I noticed how this is happening every three months. It is really getting me down. I feel like I am stuck in this never ending cycle of being really ill, recovery, 6 weeks great, then really ill again. I have typed up all my symptoms along with the dates I have been really ill over the last year and they all correlate with my B12 being due. I have also printed the guidelines off as you have suggested. Thank you for mentioning about the folate. I will ask for that to be checked too. I will let you know how I get on.

[karenharris]

I know sum people who hav them 10 wkly but that is entirely up to tge foc

[Mellowmum44]

hi i have been diagnosed with pernicious anemia had my loading dose and my first 12 week injection not due till 7th august.. feeling terrible noticing problems with brain fog forgetting words for things, feel depressed and completly exhausted work full time as a support worker as well as children and struggling to cope. Dr has said need to wait till august but cant manage till then. want to buy injection online but am not sure were to get them and which are reputable .. so like you i to really would like advice.. sorry to moan not helpful to you i know but as i said new to this and feel alone

[wedgewood in reply to Mellowmum44]

You can get B12 ampoules from a German online pharmacy

"versandapo.de in English " Yes , Google all that . Put in the reference number PZN 3862297 for 10 ampoules of Hydroxocobalamin or PZN 3862305 for 100 . Or you can search for Vitamin b12 , and you will see all the possibilities. You can pay with debit/credit card or PayPal . The P&P is the same how ever many you order . You can get needles , syringes from Medisave . Needles cost £2.35 for 100 . Sorry I've been busy today and I'm tired to death . I have to go to bed .ill give you more details another time if you want me to. Thought I'd tell you about the ampoules as they will take 4-5 days to come from Germany !

[Mellowmum44 in reply to wedgewood]

Ahh thank you so much would really appreciate any advice and will order some . Hope you feel better tomorrow x

[Nat_8 in reply to Mellowmum44]

Hi Mellowmum. Am glad Wedgwood was able to help you with info. I too was worried about ordering products online. This forum is great because we are all sufferers and know what each other are going through. Don't apologise for moaning. I had my moan on Saturday and no doubt will have plenty more. Feel free to moan anytime. We are all here to help and support each other. Thank goodness because people who aren't sufferers don't know what it's like xx

[Mellowmum44 in reply to Nat_8]

I know icat believe how helpful people on here have been. And you rightthats exactly how I feel.. hard to make people understand how crap I feel.. Was initially blamed on weight by others .. but lost 4 stone nearly now and am normally a very energetic person . But between this and interactive thyroid some days could sleep it away . And I fall over often as well as forgetting words or problems processing a response in conversation. I lead a tram and am a mum as well as studying open uni so struggle to do these things when in well. Then feel guilty moaning as it's nothing in comparison to what some people have to cope with... any tips you find helpful to cope with it would be useful .. thankyouagain foryourkind words xx

[Mozza127 in reply to Mellowmum44]

Ur not moaning I know how u feel .I've got docs Monday and I'm not waiting 12 weeks again...having palpitations. Pins and needles .back and bone pain...bloated and upset tummy...burning and hot flush , Memory fog...tiredness and I'm a fit bloke.was was wondering what was wrong. No way can this be just cus of my B12. ? I'm very confused.

[Osterley1986]

Hi Nat I’ve also got this problem I’m only lasting about 9 weeks and my symptoms are coming back, I went to my doctor this morning and there’s a blood test they can do apparently to find out why we can’t hold on to VB 12 I’ve had mine today I hope this helps you because I know how awful this is for you good luck xx