Can anyone help me?

[Busy_tired_filmmaker]

Hi All, Having an absolute nightmare. I have been getting B12 injections every 8 weeks since I was 15 and was having them regularly in Derby. I used to have them every 3 months but I found I was getting very tired, brain fog symptoms, sensory overload etc. My doctor kindly made them every 8 weeks and since then I had been feeling really well and happy. Had to leave Derby very quickly before covid lock down and moved to London. My nurse gave me one ampule and a needle kit for one more injection in June. My Partner administered the injection with the advice of a nurse over zoom. It went perfectly. I then tried to register with GP's in London but all I was getting was recorded messages saying "We are not taking new patients" over and over again. I am now currently 4 days late for my injection. Managed to get registered yesterday at a local London GP but I have to wait two weeks before I can book and then once I book I was told I may have to allow a month before I get seen. I am still continuing with this registration for my future needs but what about right now. I am four days late already and starting to get brain fog (where my words get muddled) and I am also over sleeping every day. I called my Derby GP yesterday to ask them to post my prescription and they said no they don't offer postal prescriptions. I then called 111, An hour in to the call, after answering all the questions they agreed to a consultant calling me. The consultant called me and said I need to talk to a GP. The GP called 5 hours later and said I could come to see him at the A+E GP practice but without a prescription from derby he may not be able to administer the injection himself . Even though those ods sounded not very promising, I gathered all my pernicious anaemia evidence and agreed to see him at 8PM. I got there at quarter to 8 and I walked up to a+e. There were about 50 people queuing. Some with masks on, others without. There was a lot of coughing. I found a nurse to speak to, I told her I had a booked appointment for 8pm. She said it would be a two hour wait in the cue going through temperature checks and the GP will still see me even if it takes two hours to wait in this cue. She asked me to move closer in to the cue. Which meant standing patient who was coughing without a mask on. I stood there for one minute and then left. I didn't want to risk catching covid while i was already feeling low on B12. So now I am trying to get though to my derby GP again to try and get a prescription again. Does anyone have any ideas that will help me? Waiting for two months is not an option.

[Nackapan]

In that situation I personally would pay for one whilst getting sorted.

They are offered all over the place. R9m private medical centre Gps to beauty salons Google b12 injection and price maybe.

It's quite ridiculous your last Gp didnt give you more than one ampoule knowing how the system works.

You could buy it and self inject ??

[Busy_tired_filmmaker in reply to Nackapan]

Thanks Nackapan. I have located where to buy it now and will be self injecting from now on

[JanD236]

Wow, that’s just appalling! My first thought is to self inject but it could take a week or 2 to receive supplies from Germany and also the needles etc from the internet.

I’ve just googled ‘vitamin B12 injection London’ and several clinics come up. That might be your quickest way to get an injection. Make sure they provide 1mg/1ml of hydroxocobalamin.

Meanwhile I’d keep pestering your new GP.

[Busy_tired_filmmaker in reply to JanD236]

Thanks Jan, After a lot of work I managed to pressure my previous GP to send a prescription to my chemist and the chemist will supply me a needle to self inject. that will work for this time and now I plan on buying and self injecting for the future. Thanks for your reply.

[wedgewood]

That’s so awful . I know what it’s like to feel low when needing an injection . My doctors would not give me an injection more often than every 3months and I had a positive test for P.A. There are private clinics in London where you can get B12 injections -ridiculously expensive of course . There is a current fad amongst the rich and famous to have B12 injections for weight-loss and a general tonic .

[Busy_tired_filmmaker in reply to wedgewood]

Hi wedgewood. Thanks for your advice. I am all sorted now. I have a prescription coming so I can self inject this time. You should tell your GP that it may have a placebo effect to have them more regularly and it will cause no harm because hydroxocobalamin is water soluble therefore cannot cause an overdose. The placebo quote worked for me when my doctor thought i didn't need injections and was trying to give me Prozac instead... grrr but it's just rather degrading to let people think it's all in your head. But it worked and now I have them every 8 weeks. I hate to think what they say about me in my notes. It's a shame that the GP's are not clued up enough on this yet. I wish you good luck with your battle to get the appropriate care

[LittleA]

GPS can send prescriptions electronically to a pharmacy near you. If you have a local pharmacy you can give them the name and they can send it there. I would ask to speak to a doctor directly. I would stay with the Derby doctors or get back in with them until the COVID madness starts getting better then find a new doctors.

Hope you get sorted, if no luck you can order the b12 and needles and do it your self like many of us do, that would be an option

[Sleepybunny]

Hi,

Have you considered joining PAS who can offer support and info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership costs about £20 for a year's basic membership.

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

B12d.org holds support meetings near Durham, UK

b12d.org/event

Unhappy with Treatment (UK info)?

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

May be worth contacting local MP (and devolved representatives in Wales, Scotland, NI) if struggling to get recommended level of treatment.

Useful UK B12 documents/articles

BSH Cobalamin and Folate Guidelines

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

BNF

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

BNF guidance on treating b12 deficiency changed in last couple of years but some UK Gps may not be aware of this.

pernicious-anaemia-society....

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might have something useful.

healthunlocked.com/pasoc/po...

The pandemic is impacting patients' B12 treatment in UK.

Many UK forum members have reported injections being stopped/delayed

/frequency reduced or swapped for oral tablets.

Have a look at this PAS news item below which explains the most up to date BSH (British society of Haematology) advice for use during pandemic.

pernicious-anaemia-society....

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which has some info you may find interesting.

healthunlocked.com/pasoc/po.....

Some UK forum members feel their only option is to self treat when NHS treatment is not enough.

My personal opinion is that this is a last resort but I was driven to it when unable to get any B12 treatment from NHS several years ago.

I am not medically trained.