I just consulted with Dr Chandy of b12 deficiency group and he read all info I sent and said that I most certainly have b12 deficiency and he is giving me b12 to inject this is the 1st gp to believe me I am in tears of joy omg
Note: edited by admin to correct minor typo
Really glad to hear that.
Note: edited post to correct defiance to deficiency ... though have to admit that I really like the idea of B12 deficiance when it comes to wrestling ignorance on B12 
I am pleased for you Lucieb01 but oh so disappointed that you have had to go down the route of self injecting.
Do you have any test results of your Folate level? This needs to be at a healthy level in order to process the Vitamin B12 you will be injecting.
Do you have any idea why you are B12 deficient?
Who’s at greatest risk for B12 Deficiency?
"Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency."
Can see yourself in any of the above "people"?
I wish you well
hi clive yes my folate is 4.98 but gp said no action until 2 so what would you suggest for me to buy oh the range is 8-60 (between) 8-60
Personally I I've taken 1 – Folic Acid 400μg tablet every day for more years than I can remember and that's in addition to what is already fortified in my every day breakfast cereals of All Bran and Grape Nuts.
However I have three weekly injections of cyanocobamalin which I've been on for the past 45 years as I didn't get on with hydroxocobamalin when it was introduced in the 1980s.
You can buy folic acid from any pharmacy quite cheaply. I buy 360 tablets (a year's supply) for £8.45 online from Healthspan.
Were you able to see why you are B12 deficient?
hi clive no but I have hashi, I am on ppi's, iam on metformin and I have a family history of pa my mum&her brother
Wow! Lucieb01 and your own doctor missed all those as a possible cause of your deficiency?
I am amazed and distressed for you.
Well, Clive, I am not at all amazed, sadly! It's a battle of wills between poorly patients and GPs.... and we all know they'd rather dish out pills (they get bonuses...) that mask symptoms than giving something that will help a patient recover some quality of life without having to suffer added nasty side effects. I have stopped being surprised by GPs arrogance and ignorance a long time ago...
Don't forget fish tape worm . I wouldn't know about this , but a friend who worked in the Hilton Hotel in Rome,used to eat smoked salmon every day . Sometimes the smoking does not kill the tapeworm eggs . An infestation wipes out B12 . Luckily her doctor was a good detective ! She now only eats smoked salmon when it's been frozen .
Goodness... had no idea smoked salmon could still contain fish tapeworm .... I do enjoy smoked salmon... so will freeze it before eating it in future... Thanks for information.
Yes apparently if the smoking isn't done at a high enough temperature and for long enough , they can survive the process if it's only eaten occasionally I think the risk is very low . But my friend ate it on a daily basis which is rather extreme ! I think it's a rare occurance . But I have seen it reported in reasons for B12 deficiency .
Hi Lucieb01. Really pleased that Dr Chandy's confirmation of the B12 deficency has given you a boost. Anybody who knows about B12 deficency can recognise that you are deficient - apart from your GP who appears to know nothing about it!
I know you're really pleased, and you're being sent B12 to inject but...there may be some things that you need to think about before your first injection.
If you have never injected with the type of cobalamin you intend to use, this will need to be done under medical supervision in a place where emergency equipment is available for immediate use. In rare instances, cobalamin injections can cause anaphylactic shock, which would need immideiate medical treatment 😖.
I'd also suggest that you continue with your plan to write that treatment appeal letter to your own GP and approach him / her again to try and get them to treat you 'on the books' (put the letter in before your appointment so,they have time to study it first).
It's really important to try and get your GP on board with treatment for your B12 deficiency so you have back-up medical support if you need it (for instance, you may need blood tests, onwards referrals if some symptoms persist, and people with B12 deficency often develop other conditions that require treatment.
For instance, and I'm thinking about your very low folate levels here - the kind of dose you will require (5mg) is only available by prescription - and Dr. Chandy's is not able to act as your GP and prescribe this (because he's retired). Also - if you need to inject every other day, you will need blood tests to monitor your potassium levels - and it will be difficult to ask for these if your GP does not know that you self-inject - and if they do, it's not unusual to hear here that patients have been asked to,leave and find another GP (some or supportive, but very few).
Another thing - because your B12 level is within range - in the so-called 'grey' zone - another way of confirming B12 deficency is via an MMA blood test - but this will be skewed once you have injected B12. This means that it will then not be possible to get a proper diagnosis of B12 deficency - unless you stop all B12 to let your levels drop again - and this could take many many months, during which you'd get all your symtpoms back again.
By far the best solution is to keep working on your GP...fairly quickly, if you can...get medically authorised and records treatment for them...and use the b12d.org route for supplies which you can use in between GP prescribed B12 if they won't prescribed enough B12 for the frequency you require to get and keep well.
Really really not trying to rain on your parade...just want you to be a safe as possible...whilst being full of B12...and a much healthier person.
Of course...many here do self-inject as a last resort...but usually only when all else has failed...and there's no reason why you can't keep pestering your GP whilst waiting for your supplies (sometimes takes a while because b12d.org are not always able to hold stock).
If you can get your GP on board (and letters with evidence often work) you would get the best of both worlds...medical support from your GP and a route that will guarantee access to extra supplies of B12, so your don't have to be dependent on your GP to get the frequency of injections that's right for you.
Anyway Lucieb01...good luck with whatever you decide to do...let us know how you get on...and pop back if you need any help and support...especially about the self-injecting (feels a bit scary at first but very easy once the first one is over 😖😄.
👍
hi foggyme
I have never done this before and it is scary but I will print off the info and sent it to my gp but I can't get an appointment for 5weeks but I will not use the b12 until I speak to him I have waited all this time so another while should be ok thx for your post xx
Good grief Lucieb01. Five weeks for an appointment? Disgraceful. Can you get a cancellation...or be put on a cancellation list. Or do they do emergency appointments (if you have neurological symptoms all the guidelines say treat 'immediately' - nowhere does it say wait five weeks - if they the surgery object or ask what the emergency is).
Or get another GP practice altogether?
Really not sure you should be waiting another five weeks if you have neurological symtpoms. And you could always argue with your GP for treatment even if you have injected - most admit to taking high dose oral or sublingual supplements in those kind of situations.
Thinking about the first injection - if you decide not to wait - you could always find a private GP and ask them to do the first injection (they would probably use hydroxocobalamin so if Dr C is providing methylcobalamin, you'd have to take it with you).
Good idea to put in the letter that according to the BSH, commencing treatment is time critical for those with neurological symtpoms so please can they contact you to make arrangements for your treatment to commence within the next few days.
Oh dear...this is all so much hard work isn't it...just keep at it...B12 is not far away, wherever it comes from 😄
yes foggyme I have choosing hydroxocobalamin to use from dr chandy and my gp is on holiday for 2weeks and the following 2weeks he is fully booked but there is another gp I will try to get an appointment for with luck
but I will get my daughter to print everything and I will send it ahead
Lots of hugs, hope you feel some benefit from your injection soon
Hello Lucieb01, so pleased for you.... but what a journey. Wishing you the very best.
While I am at it...shortness of breath
Oh heck I think I am turning into a smurf !
Am I deficient in b12
