I have been suffering from symptoms of B12 deficiency for many years but was only properly diagnosed last September when things really took a turn for the worse.
As most of you have found, my GP had no real knowledge of what treatment I needed. I fought and was given 6 loading doses but was then told I could have 3 monthly injections ongoing. I improved a little but was desperate.
The 2 things that really helped was reading the PAS website ( I will be a member for life) and being a member of this forum. Your support and suggestions are invaluable to everyone seeking help on here. To have people to turn to who have been where you are really helped.
I began self injecting and was injecting alternate days as I had neurological symptoms. I didn’t ever get relief after an injection like so many of you seem to. I improved very slowly. The general advice on here is work out your own frequency of injections depending on when your symptoms reappear. I never did know and although my symptoms improved I assumed I was never going to completely recover. A couple of months ago I became desperate as I felt I could no longer manage working full time. I can’t afford not to but my life was work and rest/ sleep to recover for more work. I say “work” but although I was there in body I struggled to actually do much.
My breakthrough came when I appealed for some help on here and received support from Polaris and Denisemilden who both suggested I try daily injections. Although I found it hard at first as I was too tired to inject before work and then too exhausted after work I forced myself to do it.
After just a few days I noticed a huge difference! I seemed to be able to concentrate for longer at work. My boss noticed in the first week and commented “ what’s going on?, I look over at you and you are still working at 3pm each day”.
So a few weeks on and I feel like I am getting a bit of life back. No longer am I in bed by 9pm every night. I am less irritable and am able to carry on without having to rest every half hour.
I am still having symptoms but much less than before and feel less consumed by them. I am hoping it will last but only time will tell.
So a huge thank you to Polaris and Denisemilden for your advice in my hour/ year of need and to everyone who devotes their time to help.
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Padders12
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Keep a close eye on your supporting supplements and if your B12 becomes less effective, keep positive as it may mean you just need to adjust the amount of these you take.
Many people find a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron all help and some people need different types of these to keep everything going and improving.
I reply to people here because, like you, Polaris and so many wonderful others give their time and invaluable advice and have saved my life and my livelihood.
Good luck and don't give up looking for improvement! x
I'd echo all that deniseinmilden has written - it was her advice to inject every day that finally made a big difference for me to get back on the road to normality so I'm so glad for you Padders 🤗
I'm not usually a follower of football but, like the England team, co-operation, believing in yourself and caring about each other is what it's all about - huge thanks to all of you ❤️❤️
That is absolutely fantastic, Padders12 and an inspiration to all of us who are still at the beginning of our journey back to good health. Can I just ask which company you source your B12 from, please?
Padders12 , I'm very interested in what you have said. When you say you have only had a proper diagnosis in September, does that mean that this was when you were told it was a B12 deficiency, or has the cause of the B12 deficiency been diagnosed ?
Reason I'm asking is that, like you I never got the necessary boost from B12 injection and felt that I was missing something important.
I ended up self-injecting every other day from September, because all other frequencies given on the NHS, even 2 a week for 6 months, did not stop me deteriorating, just happened faster/ slower- 1 every 3 months made me significantly worse very quickly.
The progress is evident but very slow, and now after 10 months, a pattern seems to be emerging finally: B12 injection lasts me anywhere from 10 to 30 hours depending on how energy used up- that includes the energy needed for focus and concentration, mentally/ visually/ both. I'm currently on a phased return to work, so need to improve as much as I can for next academic year.
Does any of this sound like you ? What has been ruled out by tests for you ? Are you expecting every day injecting to be a permanent routine ?
Can’t reply properly right now as having a manic day at work! I will probably have to do so tomorrow as will be shattered later. Just wanted you to know I am not ignoring you 😀
Sorry for taking so long to reply. You know what it’s like, you need to be with it! I have been deficient with B12 since at least 2010. I did not know what was wrong but I was very tired all the time. I went to see the GP who did tests and when I phoned for the results I was told everything was normal. I carried on being tired and assumed maybe it was my age or due to my depression.
It wasn’t until August last year that I noticed other symptoms. I started to get tingling and numbness on my face and head which spread to my arms legs and stomach. When I went to my GP he did some blood tests which showed I had a b12 level of 111. It was then I was told that my b12 levels were 100 in 2010. My folate has also been low back then but was fine now. I had to argue with my GP to give me the loading injections. He originally prescribed vitamin b compound tablets. After I had started my loading doses and I was collecting other medication from the chemist I realised that the compound tablets I was prescribed had no b12 in them! I was tested for pernicious anaemia but results cameback negative which I know doesn’t mean much. I was also tested for celiac which also came back negative. I think it is either due to my IBS that I cannot absorb or PA as my great grandmother had it. I had the loading doses but they were spread I’ve 5 weeks ish as nurse wasn’t available! I was then offered 3 monthly injections. I had already started reading this forum so decided I would start injecting myself. As I said previously even when I was injecting alternate days I did not feel any sudden improvement so never knew how frequently I should be injecting.
I don’t know if I will always inject daily as I don’t know if I have improved as much as I can yet. I guess when I feel I have I may consider reducing and see how it does. The only reason I tried daily was due to Polaris and Denisemilden mentioning that they did. I think one of them now injects alternative days.
Have you had your folate checked? If that is low you may not benefit from the b12 injections properly.
This is such a frustrating illness that most medical professionals don’t seem to understand.
I am pleased you are looking at returning to work and wish you all the best x
Thanks, @Padders12, this seems very similar to my own experience, except that my GP was more aware of "proper" treatment for B12 deficiency (2016: 196ng/L -one point out of range!)- and at one stage she had diagnosed Functional B12 deficiency based on raised MMA levels (and B12 then at >2000 ng/L) and gave me loading doses twice a week for 6 months, but by that time had gradually worsened.
This was when it all went wrong for me, because she did not know what to do at this point and sent me to Haematologists. They told me that B12 is toxic and highly addictive, could find no problem with active B12 or homocysteine although MMA still raised so wrote to my GP telling her not to give me more than the "recommended" 1 injection every two
months. I then had no choice but to self-inject and have been doing so every other day since September. Like you, it has taken a long time to gradually get some improvement. Also tested negative for Coeliac disease although flattened mucosa in duodenum was looking like Coeliac. No answer given to explain that or the positive breath test for SIBO which could as easily be IBS they said ("fast transit"). Yes, also have low-range folate that even when I supplement does not seem to get to ideal levels, and same with ferritin. Also I have vitamin D and Risedronate because of osteoporosis of spine. All I think related.
It's all guesswork, isn't it ? Good news about the latest research (PAS newsletter) -showing that some people need more, and that they share something in common that eventually may be able to be tested for. Let's cross our fingers for a reliable test from an unbiased source !!
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GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.
