I am having problems with my Dr as I need to have my b12 injection on a 8/9 weekly, but he refuses and says I have to wait 12 weeks. Does anyone know if there are any supplements I can buy to help me through the next three weeks, and boost my energy levels and mood. As I could sleep all day long if I had the chance. I have seen on the Holland and Barrett website they have a B12 mouth spray has anyone used this product and if so did they find it helped there fatigue.
Thanks Juliew68
Hi Julesw68 - I used the BetterYou spray back in September when I found it - it cleared the bursitis I'd been suffering in my hip within about 10 minutes of spraying and it also usually helps me on foggy days. You may also find sublingual B12 tablets will help. I'm sure there will be others along shortly with more helpful advice 
Hi Jules,
" I need to have my b12 injection on a 8/9 weekly, but he refuses and says I have to wait 12 weeks"
Do you have any neurological symptoms eg tingling, memory problems, tinnitus etc? See links below.
b12deficiency.info/signs-an...
pernicious-anaemia-society....
See Symptoms Checklist. I ticked all my symptoms and gave a copy to GP.
In the UK, the treatment for those with B12 Deficiency with neurological symptoms includes extended loading doses and then injections every 2 months.
How many loading doses did you have?
This info is in
1) BNF (British National formulary) Chapter 9 Section 1.2
All Gps will have access to the BNF.
2)BCSH Cobalamin and Folate Guidelines
Easy to find if you do an internet search. Document came out in 2014. Some GPs may not have read the BCSH Cobalamin Guidelines and may be following local/regional B12 deficiency guidelines that have not been updated since this document came out. I read the whole document and gave a copy to my GP.
3) This link has similar info to the BNF in the Management section.
patient.info/doctor/pernici...
Books
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency
by Martyn Hooper
Martyn Hooper is the chair of the PAS.
Could it be B12?: An Epidemic of Misdiagnoses
By Sally Pacholok and JJ. Stuart
thank you so much for the advice I shall have a look on line.
Julesw68
I do have problems with pins and needles in my hands everyday, and for a long time now especially when I go to bed I have a loud humming buzzing noise in my head. At first I thought it was my neighbour with her tumble dryer on late at night I even questioned her about it, (sounds silly) but I needed to pinpoint where the noise was coming from, then I realised it was me, and that it was a symptom of my pernicious anaemia,
"pins and needles in my hands everyday"
"loud humming buzzing noise in my head"
These would normally be considered to be neurological symptoms. If you are on maintenance injections every three months then you are probably receiving the standard treatment for B12 deficiency without neurological symptoms. Is your Gp aware of all your symptoms. I wrote out a list of every symptom as well as copying the PAS Symptoms Checklist. I always mention my neurological symptoms to new GPs.
I found it helpful to have a look at page 29 in the "BCSH Cobalamin and folate Guidelines". it's a diagnosis flowchart with recommendations for diagnosis and treatment of those with and without neurological symptoms.
Do you remember how many loading injections you had when first diagnosed?
Are you a member of the PAS? Costs about £20 for lifetime membership. You could ring the PAS and ask for advice.
pernicious-anaemia-society....
01656 769 717
Are you in the UK?
Hi
I had two weeks of loading injections, (3 per week over 2 weeks) that was last February 2015 and since then I have had a 12 weekly injection then was allowed two 10 weekly ones (but that was a one off) now its back to 12 weekly again but I have told my DR on numerous occasions that my body needs the Injection sooner. But he's not listening.
Julesw68
In reply to this i could say come and join my club! Lol
I have resorted to using an odd concoction of products from h&b -the 1000 strength tablets( not convinced), boost methyl spray also the B12cyan droppers (stops my yawns)but for me personally the thing which seems to work best are methyl ViePatches (got rid of pins&needles) from amazon. But i have also sourced methyl and hydroxo injections from the internet in case as i have had a couple of really bad days, probably self inflicted as i was seeing how long i could go without anything.
Just found out for sure today that my middle distance vision is completely f...... So new glasses asap for me. This has happened within last six months so i would advise anyone who has b12d to definitely have eye tests regularly or if things dont seem as they were to go for one.
"I had two weeks of loading injections, (3 per week over 2 weeks) that was last February 2015 and since then I have had a 12 weekly injection"
This pattern of treatment is recommended for people who have B12 Deficiency without neurological symptoms. I wonder why the GP is not using the recommended treatment for B12 defic with neuro symptoms, especially as you have some symptoms that are usually described as neurological.
This link below has ideas for writing to GP if unhappy with treatment. There are letter templates and supporting evidence.
b12deficiency.info/b12-writ...
Point 1. Neurological symptoms - suffering from under treatment
Untreated or inadequately treated B12 deficiency can result in permanent neurological damage so its worth fighting for.
Sadly some people have to resort to self treatment but I think it's worth trying to get what is needed from the NHS first. I only resorted to self treatment when I had exhausted all possibilities of correct treatment from the NHS.
As well as advice from the PAS (you may have to be a PAS member), other B12 websites may be able to offer support.
This website has a "contact us" tab.
This group can take a while to respond.
Having the same problem. The BNF also states every other day injections for Neuro symptoms but my gp and haematologist refuse to acknowledge this. The problem seems to be with the word "initially" so if you have been on another regime they don't want to go back to loading doses. Also it would mean endorsing self injection. Not many gps would be happy to use so much clinic time for possibly months. I know that a few are willing to prescribe b12 for injection at home but it isn't usual. In my case I warned my gp that I would self inject if I didn't get more on nhs and that is what I am doing. I have been fighting this for 5 years. Had enough!
Could I butt in here and ask: what sort of b12 levels are you all talking about?
Thanks ☺
Hi sweetnessandlight,
Has your GP/haematologist got a copy of the "BCSH Cobalamin and Folate Guidelines"? I gave a copy to my GP along with a copy of Martyn Hooper's latest book
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
Ermmm....no?
I'm really wary of "telling him his job" as I need his support through this.
Hi sleepybunny. Yes I gave her a copy with relevant sections highlighted.
B12 injection refused
B12 self injection
? Intradermal B12 injection
B12 injections frequency
B12 Injection
