I have been self injecting B12 for around 4 years. I am prescribed 3 monthly by my GP and supplement with injections bought on-line from Germany.
It was trial and error with regards to dosing. I inject every 2 weeks and the reason for this is peripheral neuropathy in my feet (mainly at night) and migraine headaches.
I went to see my GP to ask him if he would prescribe monthly (I didn't tell him I was injecting fortnightly) as I am struggling to purchase the vials now we are post Brexit (I live in the UK). He asked me to have a blood test which I said would be pointless as my levels would be high ( >150 pmol>L on the last test) He then said in all his career (35 years) he had never prescribed more than 3 monthly.
He did agree to refer me to a neurologist for the nerve damage but the neurologist wrote back to my GP and told him, if I'm deficient in B12 he can prescribe more.
Following this I left it 3 weeks before injecting to see if I could manage but I had a bad headache for 10 days running and the neuropathy in my feet was insane!
So basically I'm back to square one! I know this is a common problem but when I spoke to my GP again, he agreed that if I could find some quality research (presumably peer reviewed etc) he would consider it.
Does anyone know of any such research which determines that high B12 is harmless and also that it is needed for nerve damage?
Thank you so much
Written by
Countrylou
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I managed with a battle to persuade my Gp to give every 2 mnths but she refused to give more frequent. You are very lucky to have a neurologist with insight of the condition where as mine simply labelled me with functional neurological disorder, he refused to listen to my B12 symptoms. Google for information on the treatment for the neurological symptoms. I am sure others will have some info at hand.
There has been a lot of changes within guide lines with regard to patients who have suffered long term damage and neuropathy but I did stuble across this. nhs.uk/conditions/vitamin-b...
Hi there I spoke to a young gp I know about my chronic migraines,I was supposed to have injections at an oxford clinic for them but I was more interested in why I was having them and chickened out.My young private gp showed me onscreen that the first line treatment now for migraine recommended by NICE is vitamin b2 so having nothing to lose I tried it. It worked a treat have a google and find out some more info on it but I highly recommend.
MY NEUROLOGIST PUT ME ON ALL VITAMIN B'S AS I WAS DEFICIENT IN ALL B12 HYDROXOCOBALAMIN INJECTIONS EVERY OTHER DAY UNTIL NO FURTHER IMPROVEMENTS THEN MONTHLY OR MORE FREQUENTLY WHEN NEEDED. WORKED A TREAT, THE MIGRAINES WERE THE FIRST SYMPTOMS TO BE REMEDIED. ALL THE OTHERS TOOKA LOT LONGER AND SOME NEVER IMPROVED.
If you can't find them online or by searching forum posts here, best bet is to submit a FOI request to ICB/Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some GPs are unwilling to prescribe extra B12 injections if that is not mentioned in local guidelines.
Some local B12 deficiency guidelines are unhelpful...see blog post below.
They can also get reviewed unexpectedly so keep an eye on your local guidelines.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
Vital to get adequate treatment. There have been forum members who developed spinal cord damage from delayed or inadequate treatment.
You may want to discuss with GPs, in any letters or conversations, the increased risk of developing SACD (sub acute combined degeneration of the spinal cord) if under treated.
PAS article about SACD, sub acute combined degeneration of the spinal cord
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Club B12
Here's a website that your GP might find useful.
Club B12 is a group of researchers and other interested people who share knowledge and research into B12.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I struggle with tiredness, constant viruses and general poor health. Often wondered if my B12 levels are responsible for this. Never asked for more but obviously would get same answer. Would like to know if b12 supplements eg tablets would be absorbed?
Have you ever tried taking TMJ BETAINE ANHYDROUS ? It was the only way for to me to get better. I take now TMJ, a under the tongue dissolvable B12 ever day, and my homocysteine is lower so is my neuropathy. The amount of B12 in blood is still high but I do not have much problems anymore. Fix your gut too! For the iron deficiency I started taking Vit C infusions and my iron went up. I do take iron few times a week too.
TMG/Betaine. The TMG stands for Trimethylglycine. It recycles homocysteine to methionine in a metabolic pathway that works independently from B12/folate. Can be a useful supplement for B12-deficient patients to help to to bring down homocysteine more quickly.
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High levels of active b12
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On a standard b12 blood test my levels are normal can I still be b12 deficient?
GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.
High B12 levels not supplementing please can someone help advice
