i posted recently about the problems we were having getting regular B12 injections for my husband. He has neurological symptoms and neuropathy. Gp would not follow Nice guidelines. Due to late onset coeliac gastroenterologist recommended injection a week for 8 wks. No amount of pushing would get every other day. Hubby then worsened two months after while in a 3 month gap. Gp decided it was early dementia. We are fortunate to have bupa and saw a neurologist who said B12 every other day for 30 days. No one read his letter for four weeks so this started just before xmas. We then got a call from a B12 specialist who had been sent results and difficulties we were having by the gastroenterologist. He saw us on 28 Dec taught me to inject and wrote to gp. Mention of possible permanent damage die to lack of proper treatment has resulted in Gp providing 28 ampules every two months. This has taken 8 months with much letter writing and information providing on our part. I know we are lucky to be given B12 at least for a while. We bought capsules at the appointment as we werent sure gp would give any. We have been advised to inject EOD for as long as it takes until no further improvement. Then try weekly and drop back to EOD if symptoms get worse. He says eventually weekly or fortnightly will probably be ok. As you all know this will be for life. Gp unlikely to keep providing. Hopefully we will find one of the sources discussed on here. Private was £5 an ampoule which we cant afford. The private pernicious anaemia clinic is in Cambridge. Thank you for your previous advice and support
husband now si every other day - Pernicious Anaemi...
husband now si every other day
Hi,
I'm pleased to hear that your husband is getting plenty of B12 at the moment.
"Gp unlikely to keep providing. "
If GP stops your husband's injections at some point, come back to the forum for help.
Link to a thread I started on Patient Safety, has lots of useful links for those who've had difficult health experiences in UK.
healthunlocked.com/pasoc/po...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering a variety of situations linked to B12 deficiency.
"Mention of possible permanent damage die to lack of proper treatment has resulted in Gp providing 28 ampules every two months."
If GP tries to stop injections at some point then maybe you could mention that untreated or under treated B12 deficiency can lead to spinal cord damage.
Maybe you could pass on this PAS leaflet.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
May be something useful in these threads below where I left detailed replies.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I'm not medically trained just someone who struggled for years from undiagnosed and untreated B12 deficiency.
Quite the ordeal you've been through. It sounds like you're getting all the support you need from the medical system now. But like most of us, self injection with ampoules from Germany is often the only way to keep the B12 regular.
"We are fortunate to have bupa and saw a neurologist who said B12 every other day for 30 days."
Thank heavens you had a Bupa neurologist. How can a GP decide something is early dementia without referrals or further investigations? Surely they can only refer you to a neurologist with symptoms who will assess for dementia?
"We then got a call from a B12 specialist who had been sent results and difficulties we were having by the gastroenterologist. He saw us on 28 Dec taught me to inject and wrote to gp."
There's a B12 specialist? That's terrific. May I ask if that is through your Bupa cover?
Glad that things are moving forward. Just keep injecting and moving around the body sites to keep the muscles from fatiguing.
hi wevdid get bupa to pay for the consultation which was a surprise. He runs a PA clinic. Irin infusions and B12. The gastroenterologist we saw is doing a combined clinic with him soon that is why he knew about it and referred us. Such a relief when people confirm what youve known all along. Go said more B12 would be poisonous and memory issues more likely dementia. I worry for others in this large practice. I wrote several times with help from here NICE guidelines and research. I asked if he read my letters he said No. i even rang an Admiral nurse (dementia nurse) she said he should treat with B12 while doing other tests. She said B12 D can be mistaken for dementia it was all ignored. I wrote months ago and said Id do the injections. All ignored. Thank goodness for places like this! Many thanks everyone
Just simply lack of training, awareness and education on nutritional health and b12 in particular sits at the root of the issue for GP's and most medics.
I think because B12D is a systemic problem, it contravenes all accepted wisdom and knowledge about the body. B12D can mimic dementia, but it is not actually dementia. But even my partner doesn't fully accept my problems because she can't accept that B12 would impact the body this way - peripheral neuropathy, anxiety, paranoid delusions. She won't accept that it's all because of B12. And sadly, neither will Doctors or most other people.
So it sounds like you've had a very good outcome. I hope things can start to improve for you and your husband, and they will.
As to whether the medical community's knowledge of B12 improves at any point is another matter entirely.
I can't believe that your partner doesn't realise how important B12 is. Hasn't she noticed how much better you are now?
Yes she can see Ive improved loads. But she still tells me she doesn't believe B12 can be at the root of all these problems.
Perhaps because I have moodswings and have struggled with emotional regulation, she may think and still refers to it as 'that time you went mental'.
Its probably because I didn't get a diagnosis and attempted to self treat. And when the deficiency tool hold, I did lose touch with reality. Maybe its more a case of lets move on and not talk about it.
I had mental problems too. After a few weeks on B12 I went back to normal. It was this that convinced my partner about the effects of B12. It was a choice between B12 and a miracle. And he doesn't believe in miracles.
I think anyone who didn’t react to what you have been through would need psychiatric help! Sounds like you are a normal human being who simply needs people to listen. You sound very balanced and switched on to me. Keep positive - it’s the little wins that will help us all win through.
This is shocking to hear, but sadly not uncommon. I provided a court report that found a GP was in Breach of duty for not providing B12 and left the patient with permanent neurological damage. I work in medical negligence.
I’ve still got peripheral neuropathy from my spinal degenerative disease after 8 months of B12 eod. I am waiting to hear from the surgeon about an operation. At my appointment I saw an intern instead of the consultant and she put me on a three month till next appointments after Further MRI. Schedule. Instead of the urgent that the neurologist had done. And these new mri reports are worse than the original.
It’s now at the stage of affecting intimacy , and as soon as I told this to the GP , he wrote it all down for me and printed it off to take to the next appointment with the surgeon. He said they panic when this happens to a patient because the fear of getting sued for negligence is high.
It shouldn’t take the fear of getting sued or their competence questioned in front of the professional board to get proper treatment.
Hi Concerned_wife, that’s really interesting.. would you be able to provide a link to the court report concerning medical negligence of a GP / B12 treatment? That would be a very helpful document to have!
Many thanks, Dilly
Hi I'm afraid I can't share the court document because it is now with the solicitor in the court for the case to go ahead. However I can share some general information that was referred to within the document I'll get back with that once I'm in the office. I may anonymous it and share what I can. My GP just called and asked me to book on for a blood test, I said as pee nice guidelines, testing should not be done once treatment started. Waiting to hear back...
Thanks so much for this, much appreciated 
When I searched online for "B12 deficiency uk legal cases" I found a solicitor's website that mentioned they had taken on cases involving delayed B12 deficiency and included a case study.
Thanks for this, Sleepybunny, I will have a look when I get home
Hi, I have found the report provided by our Expert Witness (GP) and his attachments for reference. He does provide Guidelines for the investigation and management of B12 deficiency, and states what we already know that blood tests are not required once treatment starts. He did find a breach of duty whereby the patients GP should not have been aware of the neurology recommendation of monthly injections for life and sought the opinion from a Neurologist if this was to be changed. However once I release the report to the Solicitor, I am not privy to whether the case proceeds to court or the outcome.
It appears I have hit a brick wall with my GP, he is asking for an annual blood test and I will (if I can be bothered) send an email stating that blood tests should not be done when under treatment, or he can refer me to a neurologist. In the meantime I have my own supply of B12. My daughter has the same predicament with her GP. We really need the UK to have these supplies over the counter and stop the beauty industry selling them! Rant over....
Thanks for this. I completely agree, it is so frustrating…
I’m glad you have managed to get treatment, this is really positive. Yes, £5 per ampoule is expensive, so I have ordered my next batch from Germany (Pascoe), they took a while to arrive (as it was before Christmas), but it worked out at around 70p or so an ampoule
It is good to have a letter on file, it may be past it now but in future, it may be helpful to ask the practise manager in writing why treatment is refused and request a written response.
Good luck.
Hi Helsan
"We then got a call from a B12 specialist who had been sent results ..."
Would it be possible to have the name of the B12 specialist and the neurologist by PM (private message) as names cannot be given on this thread? I'm desperate the find a specialist to advise my doctor.
its the iron clinic at nuffield in cambridge, cambridgeironclinic.com/
New GP has stopped my prescriptions for Hydroxocobalamin
Help for my daughter's diagnosis please
Treatment Confusion Need Help
