hi all, this is a part rant / part informational post I guess. I was diagnosed with PA 10 years ago and have been receiving injections every 3 months since.
last month I went to the GP and asked for the injections every 8 weeks instead. (I naively thought this might be straight forward due to the NICE guideline change) much to my dismay the GP told me the following:
My IF test (done 10 years ago) was negative.
My parietal cell test was weak positive.
therefore he would be stopping my injections and replacing them with high dose tablets.
When I questioned him on this, he told me the reason for this was back 10 years ago they didn’t have the tablets they have now, (total lie) and that the injections were (he muttered this under his breath) were costly and time consuming.
He explained that if I don’t have IF positive then I should have no issues absorbing b12 so tablets will work for me. (This I know is also rubbish)
anyway. I have since found and have been researching the company “vitajab” it seems they are a private company who administer b12 shots at local pharmacies. For the price tag of £29 per one.
It appears the GPs might be stopping the jabs in my area (Stafford uk) and this might be the way forward for me to get a shot every 2/3 months from now on.
Anyone else seeing this out there? And any information about vitajab would be welcomed.
Cheers.
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Kristianjones_
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Have you thought about self -injecting) That’s what we all do on this forum . Cost ? — about £2.00 everything included . Ampoules from certain excellent german online pharmacies , needles syringes , swabs and a sharps bin from U.K. medical suppliers . If you wish to know more , just ask . It’s not as daunting as you might fear. And so convenient. You can inject B12 Intramuscularly or Subcutaneously.
Is it possible to get the supplies to self-inject in the UK? If so -- I would do that. I am doing that here in the US and have had to get supplies from other countries, but I have been able to do so.
In the same boat as you. You don't need to get supplies from other countries... you just need to look online. This is what my wife and I had to do. Vitamin deficiency is at "epidemic" proportions, here in the states, because of the garbage that they allow manufacturers to put in our food! We can't even have a "plain ole glass of water" without it being full of added industrial wastes! All for our health, of course! They make it hard by regulating B12, but everything can be found. Legally. You just need to "think outside the box." Let me know if you need information.
Hi. I am in the states as well. I have gotten my Hydroxo B12 in the past from Actavia (formerly Warson) for years. There was a shortage over the past couple of years but was able to get a 30ml bottle last year that I've been milking every month. Where do you get yours from in the US?
Am so sorry you're experiencing this...grrr!How dare they mutter & make you/us feel we are not worthy of the treatment we need. We don't want to be reliant on injections to keep well or feel we asking a massive favour rather than simply getting what we need.
If you feel the need to increase from 3monthly to two monthly, then how on earth does a Dr think swopping to tablets is going to be effective!??
I've looked at vitajab before, but they're not anywhere near me, though I have asked if they are intending to head to Norfolk anytime soon.
Believe Superdrug do them but I'm wondering if it needs to be a PA diagnosis to access then.
Do you feel you've got as far as you can with that Dr or would it help if you presented them with more info to prove their misunderstanding?
If so then if I were you I'd ask your Dr for an address to write to to make them aware of this. There's a patient advisory type service, a member of family told me about it, I will try to locate it. Know she had a decision changed by them about treatment(not b12) a Dr had tried to stop. Theyvwere interested in how her life would be effected without it,etc.
Treatlocal also do jabs through pharmacies. Same charge - £29. It might be worth doing a postcode search to see if their coverage is any more local to you. I managed to book without a specific diagnosis, just fatigue.
I'm in Norfolk too. I now self inject but I do know of a beauty clinic who administers B12 jabs for about £28. They offer a course of 6 for a slightly reduced price. If you want to know more, I could chat message you.
If Superdrug need a PA diagnosis before giving B12 injections, then surely they should be advising these people to return to their GP for those injections ? That is the treatment (not cure) for PA. Otherwise, they are charging for treating a condition that is recognised and treated by the NHS but without the regular monitoring of folate, ferritin, vitamin D and thyroid.
If the dividing line between those worthy of the cost to the NHS of injections and those whose treatment gets stopped is to be a PA diagnosis from a positive IFab test, then ALL GPs should be made aware that an Intrinsic Factor antibody test can only determine PA if the antibodies are active during the test - which means that only 40-60% of those with PA will test positive. Which also means that 40-60% of those with PA will not - and will get their treatment stopped.
Martyn Hooper, the founder of the Pernicious Anaemia Society, had three IFab tests before getting a positive result. A less aware GP, working under the current restrictions, would have stopped his B12 injections after the first negative result - and would not have diagnosed him with PA.
£29 for an injection every 3 months sounds okayish - about £10 per month - but will this remain the price once demand increases ?
For many here, who need more frequent injections, the only remaining option would be self injection. For those unaware of the number of people this could affect and the likely cost to them, see the survey results in the right-hand column under the heading Topics, subheading All Things Pernicious Anaemia Society.
Hi! Not quite the same situation, but I asked my GP for more regular injections and I was told that the surgery did not have the resources available to meet my request ie staff time to administer. We came to an arrangement that their nurse show me how to self administer. The vials I get on prescription and the surgery supply needles etc.
My original post explained this in more detail if you want to click on my profile.
I am so sad to keep hearing these stories of doctors who will not give patients the treatments they need. They did have oral meds as strong as what they have now 10 years ago. I was able to get by with those for several years until I could not and then I needed injections. Lots of people with PA need injections. Since you were doing well on injections, it does not seem like a good idea to stop them. Self-injecting makes it so much easier to have an injection whenever you think it would help. My husband injects my B12. I am currently taking it once per week. I seem to get noticeable symptoms (tingly toes) at 3 weeks and my aim is to keep the symptoms away. I hope you get the B12 you need!
Hi Kristianjones, having read all of the above follow Wedgewood's advice -SI is the way. I've been SI just over a year now, and although it seems daunting at first you soon get used to doing it (submit for me), and all the information that you need is available here on the forum. I'd be tempted to just go ahead and save yourself all the hassle and uncertainty with the surgery, sadly it is becoming the norm for jabs to be stopped. Wishing you well.
He explained that if I don’t have IF positive then I should have no issues absorbing b12 so tablets will work for me. (This I know is also rubbish)
Your GP needs to do some homework on PA and B12 deficiency.
I think there's a chance you can get your NHS injections reinstated.
I left detailed replies in threads below including a list of useful info to pass to GP and links for those struggling to get adequate treatment for B12 deficiency in UK.
It would be OK if you could just walk into Boots or any pharmacy and get what you need, like any type 1 diabetic can. But denying people treatment when they don't have ready access to what they need is absolute medical harm.
Disgusting!! Many people test negative when it could most likely be positive. Even 'pernicious' Anaemia name has been downgraded. Do the tablets even work?? I heard not.
Report the doctor, this is BS, you should be tested for IF and PA antibodies again as well as other stuff (MMA/ Homocystine etc..) Full bloods. Mention that you suspect that"vitajab" may be a factor on the withdrawal of your B12 injections that you have received for 10 years and ask the question "is my doctor receiving any benefit from vitajab?" and CC this to your local member of parliament, doctors surgery (admin) etc.. Find a new doctor, you will need one! Good luck!
I saw a Facebook post on a nearby village association site a few months ago. Someone was asking if anyone knew of anywhere she could get a b12 injection in the area as she was unable to keep her appointment to receive one the next day at the GP surgery.
Within a few hours she had 4-5 recommendations for 3 different places in the locality, two hair/ beauty salons and one beauty/massage parlour!
"that the injections were (he muttered this under his breath) were costly and time consuming."
Injectable B12 is cheap, probably less than £2 per ampoule.
The time for nurses to give injections is expensive ...I cynically feel that the move across UK to put more people on high dose oral is mainly due to wanting to save nurses' time and therefore to save money.
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