B12 deficiency, PA, awful symptoms and no longer receiving much needed injections
Hi Im new and need advice please. The... - Pernicious Anaemi...
Hi Im new and need advice please. The gp has stopped giving hubby his 3 monthly inj cos of covid, his symptoms are awful, what can we do?
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Neddot21
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Write to your Gp ,practice manager and mp.
Keep it simple. Give symptoms and say he needs his treatment.
And or buy some to self inject or ask for a prescription .
Thank you so much, I will do that!
We have already spoken to GP and he just said take B12 tablets, these haven’t worked and symptoms are worsening. This morning I found a company in London who do b12 shots for £29. They use Methlycobalamin and I think husband normally receives hydroxyocobalamin - Which is better and would it matter if had these injections for now and then if GP starts doing them again could he mix them? Ie. Have methyl for 2 months and then hydroxo on 3rd month. Thanks so much 🙏
When you write to your GP, practice manager, and MP, as suggested by Nackapan make sure to cc: your local press, radio and TV.
Include in the letter the advice from the BSH - b-s-h.org.uk/media/18259/bs...
Thank you very much for this information, I will do that.
Can I ask if anyone has had any joy with resuming regular injections at their GP surgery yet?
And is Methyl better than or as good as Hydroxo? He really needs an injection fairly urgently so doesn't want to wait until this is sorted out, so will pay for this one, we just want to make sure its safe first as we don't really know anything about all of this. Thank you again.
Hello! I had my B12 injection a month ago, they had no issues with getting it booked in, I did think it may be cancelled. Get on at them again, completely understand how it feels but wouldn't be paying for it! Good Luck!
Yes I kept on to doctors ...my symtoms where getting worse when they put me on tablets ..got worse .was struggling with my hands ..pins and needles and tightness.told doctors was causing neurological problems..they give me 5 loading dosess and now on injections every 8 weeks I had burning tougue fatigue. .tummy problems. Headache .mood swings...but my hands are still not right..so keep on cus the longer it's left the longer it takes good luck.
Any one else know how long it takes hands to get back to normal been weeks now since 1st injection
I had my B12 last week. I had to argue about it because I was originally told that they would no longer be available. The nurse I spoke to quoted the information about the liver storing B12 for a year so I told her that information had been updated. She said I could have the injection but they would also test for intrinsic factor. I had the blood test at the same time as my injection and as I was leaving the surgery I was told that I should make my next appointment and the nurse did it there and then. Not sure what will happen if I have a negative result from the blood test but I will ask them to repeat it and see what happens.
Hi,
Have you considered joining PAS (Pernicious Anaemia Society)?
They can pass on useful info and offer support.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.
healthunlocked.com/pasoc/po.....
It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, list of B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find interesting.
healthunlocked.com/pasoc/po...
I'm not medically trained.
It seems so hit and miss with many individuals who are being denied their B12 injections, at first was told by the receptionist that the body can store enough B12, and then asked her is the nurse still in the practice,yes,I then told her I had more health problems without my injections and needed the injection,and I wasn't happy,and I will be ringing up again,2minutes later the doctor rang up,asking me what's the problem, don't get fobbed off,I told the doctor I need this injection because of my symptoms,and I got my injection within the week, please don't put this off,or be told otherwise,its imperative, the symptoms and other health problems it causes can affect your health,the NHS is open for business, especially if it's done at your local health practice, it can only make your condition worse, people might seem to think it's no big deal,but without this injection symptoms can increase, and its nigh on impossible to reverse them.best of luck.
I know of two surgeries near me in Somerset who are giving injections, the nurse comes out to you in the car park.
Please ring back the surgery, tell them that the guidance has changed and that if you have symptoms you should be able to have your injection. I was refused mine initially but when I rang back with worsening symotoms, I was told I could have it as the guidance had just changed. I had mine in the car park! Don't give up. I hope it works out
Can I please ask how the guidelines have changed for GP surgery's? Just so I have that information when he calls us tonight with his decision. Thank you 
My understanding is that it has gone from no injections to be given during COVID to the GP having to consider patients’ symptoms (those with non-dietary B12 deficiency), and then consider how best to deliver those injections. I had mine done in the car park of the surgery in the open air and it took all of a few seconds. Surgery and nurse happy with that. Other alternatives to avoid going into the surgery might be a nurse coming to your home or getting a local pharmacist to do it. The fact is, it can be done and they should be looking to help your husband. Let us know how you get on.
Thank you so much everyone for your really helpful replies!
My husband spoke to the GP again yesterday to say he’s desperate and he listed all of his symptoms which worryingly include memory loss, tingling and numbness in hands, tinnitus, vision problems, itchy burning scalp and very rapid hair loss! Some new symptoms and some far worse since cancellation of injections. The GP said he had to follow the government guidelines and protect his nurses etc.. and to look privately until guidelines change. We asked if he could prescribe it so we could self inject and he said not unless we were medically trained to do so. So I then quickly printed off the guidelines that fbirder helpfully provided and dropped them in to the surgery. We were told that the GP is going to discuss it in his practice meeting today and will call us this evening, so praying he agrees to do it!
In the meantime I have been searching and have found a couple of places that do hydroxo booster shot injections one mg and also Methyl drips at five mg! Thirty and forty pounds. Sorry it won’t let me type numbers on here. Has anyone had the five mg drip? Wondering if that would be better than the one mg injection as he needs it so much at the moment!
Can I share links to these places on here, for others who may like to go there?
Final question, normally after his injection my husbands energy and moods noticeably improve, but with the hair and memory loss this time, do you think that these can improve or be reversed? It’s just awful the damage it does physically and psychologically...
Thank you so much 🙏
I haven't had any hair loss myself, and I take other medications that can cause memory problems, but it's the pins and needles, the tinnitus, that I have found has got worse is my main cause for concern, as for the doctor saying he has a care of duty to his staff etc, my nurse had the necessary facial visor, mask,gloves,and I was also given a mask a gloves to put on to get my injection,so I don't understand the problem, if that's the case, the surgery would be closed,and he wouldn't even see any patients, its symptoms that probably are very difficult to reverse, mine haven't, and that's why I carried on asking for this injection, best of luck.
I am seriously wondering what are the GP surgeries are doing. They are refusing to give B12 injections, they have a notice on the locked surgery door which says effectively clear off, their telephone is permanently engaged and when you do get though it is to an internal system which gives a ring tone the cuts off, and they keep sending multiple copies of fatuous advice texts.
If there is anything wrong with you it is the paramedics and ambulance service which comes to your aid.
GP’s are conspicuous by their inaccessibility.
Just a quick update - The GP has Finally agreed to give the injection this evening! Such a relief! He has refused loading doses though. It’s been almost 6 months since my husband has had it and I’m actually really quite angry that he now may have irreversible problems as a result! At least hopefully now he will get his regular 3 monthly shots.
If he were to supplement this by self injecting in between, does anyone know how often/regularly he should do it, weekly or monthly..?
Thank you so much everyone, I’m so relieved to have found this site and your amazing knowledge and kind help, really appreciate it 🙏🤗
