Thank you to everyone who posts on here... I have learnt so much about B12D over the last couple of months!
I had 6 loading shots which finished on 23rd March. I felt great the week after, then all my symptoms started creeping back. After five weeks I went back to my doctor to beg for my next shot, but, as seems the norm, was sent packing and told to wait until June.
Tomorrow I have more blood tests, including B12 even though I pointed out to my doctor that it would be high. As soon as my appointment is over I am going to start self medicating with a spray which my boyfriend bought from amazon after I came home crying after my last doctors appointment.
My question is how much should I start with and how long should I give it to work before moving on to self injecting?
Thank you,
Jennie
Written by
Jennie16
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Listen to your body and go with when the symptoms start returning but advise you check the ingredients first - if they include B6 then check that you aren't taking more than 100mg a day - though suspect it won't be relevant.
There isn't any B6 in the spray. I am taking a daily multivitamin, which contains a range of vitamins and minerals including 10mg of B6, so that should be fine.
The spray suggests 4 doses a day which amounts to 1200 ug of B12 (whatever that measurement is!)
ug is one way of writing micro-grammes - the amount is 1,2x the amount in a standard B12 shot in UK but likely not all of it will be absorbed. i use various sprays and a sublingual tab and get through a lot more than that in a day. just about to take evening dose of methyl which will be 2500ug
The probability is that you will notice a difference - I'm at the very high end of B12 doses and need to keep my levels astronimic. Whilst very few people that I am aware of cope with the standard treatment in the UK there are also very few who seem to need quite as much as I do.
my symptoms start coming back wtihin 24 hours of a maintenance dose if I don't supplement
I experienced exactly the same thing as you last year.
I have found the B12 Boost Spray is very good and acts quickly to give me a lift.
Like Gambit, I need ridiculous amounts of B12 and supporting supplements and my body depletes everything very quickly so I needed too many squirts per day to rely on it alone - I found it made my throat sore if I took the silly amounts required to keep me feeling well. I found the tablets better with regards to this but nothing works for me like injections with supporting supplements.
For more information you could look up my profile and see my post "My Experiences".
I hope you find the right balance for you and feel better soon.
Are you vegan or vegetarian, had stomach surgery, take lots of antacids/proton pump inhibitors, diabetic on Metformin, had extensive dental treatment with nitrous oxide, do rigorous exercises or take part in extreme sports etc.?
Do you know what your folate (b9) levels are as this works hand in hand with B12. Is folic acid included in your multivitamin tablets?
I've wondered what the cause is too, as I had never heard of it until I was diagnosed. I had a car accident when a child, run over and suffered a head injury. I was in a coma for 6weeks and had to learn to walk again. I also have no memory of before the accident. Could this have been the cause, I've looked into the causes and only found one reference to a head injury being one of them. Nowhere else mentions the possibility. All the other causes are ruled out, except I was anorexic in my teens.
I'm not medically qualified but I guess your period on anorexia will have had a profound effect on you store of B12 although this will improve with a "normal" meat/fish/dairy etc eating diet as this is the only "natural" way to absorb B12 through the stomach - unless of course you have absorption problems.
If you have been diagnosed with Pernicious Anaemia you should be having injections of B12 from your doctor not relying on sprays or tablets from Holland and Barrett.
I too would be very interested to know if any folk on here know why they are B12 deficient. I'm awaiting my GPs response to a letter I've sent 2 weeks ago asking for trial injections. I would feel very encouraged to know if anyone has had them because of neurological symptoms or diet related without being tested or confirmed as B12 deficient etc.
The questions I asked Jennie16 above cover some of the reasons amongst others why people become b12 deficient
"Are you vegan or vegetarian, had stomach surgery, take lots of antacids/proton pump inhibitors, diabetic on Metformin, had extensive dental treatment with nitrous oxide, do rigorous exercises or take part in extreme sports etc.?"
I'm not medically qualified to answer but if you identify with any of the above and have "neurological symptoms" then it's quite likely you are b12d.
If you are currently taking supplements then having a b12 serum test will be useless - unless it come out exceedingly low.
I hope you get a good response from your doctor and wish you well for the future.
I'm not vegan or vegetarian and don't take part in rigourous exercise, extreme sports (unless you include getting five children to bed at a decent time at the weekends!)
I've been on the contraceptive pill for 20 years with two breaks for children - I read somewhere that that could reduce B12. When giving birth i did use nitrous oxide but not excessively for a prolonged period.
I had my gall bladder removed 14 years ago which I think explains my low bilirubin result which was 3 umol/L (range 4 - 20). Other than that I've never been on any medication or had any surgery.
My blood tests from 1st February (which I got copies of in mid March after reading on this forum that doctors don't give you the full picture!) B12 was 119ng/L (range 191 - 663), something that the doctor had told me and decided to treat with 6 loading shots and then once every 3 months, and my folate was also low at 3.8ug/L (range 4.6 - 18.7) I started taking a multivitamin at that point which includes 200ug folic acid.
I had a test for gastric parietal cells which came back negative, though I understand that you can pretty much ignore that test!
I am having a coeliac blood test today (along with B12 which I already told my doctor would be pointless as it will be high - think the tests were to fob me off as i had gone back to beg for another injection after 5 weeks) and i have an appointment with a gastroenterologist in June.
I am not a medically qualified person and there are others on here who will be able to give advice, but it looks to me as if you are getting to the bottom of things. Hopefully the gastroenterologist will be more helpful than your doctor.
You certainly have a busy life with five children and I've no doubt that means more than a few skimped meals. The only natural way to obtain B12 is through eating red meat, fish, chicken, eggs & dairy products and these together with folates (leafy green vegetables) which work hand in hand with B12 will perhaps help restore your levels. The good old "Meat and two veg" meals of yesteryear.
"I had a test for gastric parietal cells which came back negative, though I understand that you can pretty much ignore that test!" that is true as it's only 50% accurate so it's also possible to come back positive if the test was to be done again.
The other things you mentioned could all have contributed to depleting your B12 over time.
We are very good with meals and eat a balanced diet (except on birthdays when cake is an acceptable breakfast and takeaway is a must lol). I think it's a must when you have children in order to teach them to eat properly. The only thing I don't do is drink milk, as I don't like it, but I make up for that by having lots of other dairy and making sauces using milk. I'm pretty sure it must be an absorption issue for some reason.
Lets hope you get a correct diagnosis soon and even if it is Pernicious Anaemia it is so easily treated and I've had it for over 45 years and I'm still "clivealive" coming up to 75 next month.
If you would like to read my P.A. story click on my name at the top of this reply
"I had a test for gastric parietal cells which came back negative, though I understand that you can pretty much ignore that test!"
Actually the anti-GPC test doesn't give false positives very often. However, there are other conditions that can give a positive result. But a positive for anti-GPC, combined with low B12, is a pretty good indicator of PA.
I regularly use a spray to top up, and take between 4 and 6 sprays a day - definitely helps me. For those of you in the UK, Holland and Barrett do a B12 spray that you can sometimes get a good deal on...
I just started doing the spray as directed (4 sprays once a day for the one I bought) in the morning. It took a few days (3-4) to feel the effect, but it did help while I was waiting for my sister-in-law to bring some B12 for me from Spain. I feel like I'd rather self-inject monthly and maybe use the spray if needed as the injections are much cheaper (~ 3 Euros for four months worth) and you only have to do it once a month, whereas the spray is everyday, and more expensive, so I'm going to just use the spray if I'm getting towards the end of a month and feel low. I think it doesn't last for very long though (I guess as it's designed to be used daily), so I tried stopping it for a few days, and could feel the dizzyness returning gradually.
You can also buy Vit b12 spray ar Holland & Barret along with Bit b12 tablets, I take a tablet daily. Works for me
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