Just wanted to say thank you for the invaluable advice. My GP Practice used to allow me to self inject and get my Vit B12 on prescription. This policy was changed due to the Practice no longer being permitted to provide me with needles. Despite offering to buy them myself I was told I could no longer get the B12 either as they couldn't provide the needles! Ironically if I was a drug addict I could have them! The practice is a firm every 3 months and not before. My health is declining, tingling in arms, burning mouth syndrome, tinnitus and general fatigue which I feel may be due to lack of Vit B12.
So, thanks to you lovely people I have a delivery arriving today from Germany of Vit B12. The cost was less than 60p a bottle!
I'm going to do a 5 day course then every other day until I can work out how much I need.
With gratitude
Polly x
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PollyMoly
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I hope you soon see an improvement in your symptoms.
I still think there is a chance that you can persuade GP to increase your NHS injections.
"The practice is a firm every 3 months and not before."
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
You should be on second pattern if you have neurological symptoms.
Neurological symptoms associated with B12 deficiency include
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, memory problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc.
Does your GP have a list of all your symptoms, especially any neurological ones?
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.
I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are supposed to be filed with medical notes so harder for GP to ignore.
Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, requests for referrals, any other supportive evidence.
GP can find treatment info in their BNF (British National Formulary) book Chapter 9 Section 1.2 although possible that some GPs may be using an out of date BNF book.
Your GP may not be aware that BNF guidance on treatment of B12 deficiency changed about a year ago.
For those without neuro symptoms it used to say maintenance injections every 3 months. It now says every 2 or 3 months. For those with neuro symptoms it is every 2 months.
Were you given the recommended level of loading injections at start of treatment?
If no neuro symptoms it should have been 6 injections over 2 weeks . If neuro symptoms present it should have been every other day jabs for as long as symptoms were continuing to get better (improve).
There is no set time limit on how long the every other day loading jabs can continue for someone with neuro symptoms; they could go on for weeks even months.
BSH Cobalamin and Folate Guidelines mention a possible review of loading jabs after 3 weeks of every other day loading jabs for someone who has neuro symptoms but my understanding is that if symptoms are still improving at the 3 week mark then the every other day jabs should continue.
If you weren't given recommended pattern at start of your treatment or your neuro symptoms have developed after your treatment started you may be able to persuade GP to give another set of loading injections.
There is an active PAS support group in your county. You do not have to have a confirmed diagnosis of PA to go to a support group meeting but you do need to be a PAS member.
If you don't have a PA diagnosis, did GP test you for Coeliac disease, H pylori infection and other possibilities?
Interesting article from Mayo Clinic on B12 deficiency
I wrote a very detailed reply on another forum thread with lots of other links to B12 info eg B12 books, B12 websites, UK B12 documents/articles etc. Hopefully there'll be something useful in it for you.
There are some parts of UK that have local guidelines on treating B12 deficiency that are out of date. I suggest tracking down the local guidelines for your area and comparing them with BSH, BNF, NICE CKS links etc.
Your GP may not be aware that it is possible to have PA even if results of Intrinsic factor Antibody tests are negative (called Antibody Negative PA).
NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac and anyone with a first degree relative with Coeliac disease.
Coeliac tests can also be unreliable
If you've been tested in past which tests did you have?
GPs should order tTG IgA test and Total IgA test. Did you have both?
tTG IgA tests for antibodies to gluten.
Total IgA checks which patients have IgA deficiency.
A patient with Coeliac disease who has IgA deficiency may have negative results in tTG IgA test because their bodies cannot make the antibodies to gluten that tTG IgA test looks for. They will need other tests for Coeliac disease.
See NICE guidelines Coeliac disease below for more info.
Many on this forum also have thyroid issues. Symptoms of thyroid disease overlap with those of B12 deficiency. I suggest putting any thyroid results on the Thyroid UK forum on HU. It's a very active supportive forum.
May be more info in link to other forum thread at bottom of my first post.
I have written other extensive replies on forum which may be worth searching for. Some include suggestions on how to cope with stubborn GPs.
It can take courage to challenge GPs and some do not react well to assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
Do you have a supportive friend or family member who can go with you to appointments that might be challenging? Even better if they have read about b12 deficiency and are willing to speak up on your behalf.
It's my impression that GPs are sometimes kinder and more willing to listen if another adult is present. It can be useful to have a witness to what is said.
PAS support groups may be a source of emotional support.
Best advice I ever got was to always get copies of all my blood test results. Most UK GP surgeries have online access to medical records.
More about letters
Putting queries about treatment/diagnosis into a letter provides a paper trail which can be useful if there is a need for future complaint. Always keep copies of any letters written.
Writing letters can irritate some GPs but I think this has to be weighed against how vital it is to get adequate treatment...there can be severe consequences such as sub acute combined degeneration of the spinal cord if untreated or under treated.
PAS article about SACD, sub acute combined degeneration of the spinal cord, avialble to PAS members only.
I do understand why some forum members resort to self treatment. I did resort to self treatment when I had exhausted all possibilities of NHS treatment.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
I keep meaning to read " " but haven't got around to it yet.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw or uncooked fish eg sushi/smoked salmon. There are other parasites that are associated with B12 deficiency in humans. Search online for "parasites B12 deficiency" for more info.
Diet
Did GP ask you questions about your diet?
If you eat plenty of B12 rich food eg meat. fish, dairy, eggs, foods fortified with B12 then diet as a cause of b12 deficiency less likely and more likely to be an absorption problems in gut.
Medicines
Any concerns about current medication should be discussed with GP.
Some medicines have been associated with low B12 levels in some studies. These include metformin, a diabetes drug, PPI drugs such as omeprazole and some anti epileptic drugs such as pregabalin.
You're correct about getting needles if you're a drug addict, even people who inject steroids use the drug clinics for needle exchanges.
Diabetics get insulin. Hopefully the day will come where those suffering from PA won't have to jump through hoops before we're treated the same. Especially how many £billions it costs the NHS if left undiagnosed & causes so many other issues.
Hi Polly , do you mind if I ask you for how long you have tinnitus? I have b12 Deficiency and I have tinnitus for more than 7 years , always fatigue ,insomnia, shortness of breath , tingling in arms, blurred vision, heart palpitation, burning feet, and my tinnitus got louder and my insomnia became chronic than depression followed. I got a shot from my doctor of cyanocobalamin and then she told me to take pills, but I never realized that all my problems could be related with low b12. I was 188 and one month after the shot my levels were 450 than two months latter 250. Are you using hydroxocobalamin ? I'm in USA and I could only find methylcobalamin Injections do you think are just as good?
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