Hi, I was diagnosed two month's ago, had the first wave of injections but if anything feel worse than before. I realise it might take time to work. What I am really trying to find out are three things:
1) I have a number of mental health symptoms, particularly a sort of invasive brain fog where I cannot concentrate, and have to really focus to remember a task I am undertaking. My brain sort of buzzes constantly. For example, it has not affected driving, but I find holding onto a route takes a lot of work. I now use the sat nav even for journeys I undertake daily. Also I cannot multi task at all. Also, my memory - short and long term - is really declining. I have had a dementia test and did not flag up, but the questions were really straightforward, like 'What colour is the mug I am holding?' The question is will my memory return in time, get worse, or stay as it is, assuming they can get the B12 to be absorbed into my body.
2) Can anybody recommend a specialist, or knowledgeable haematologist for example, either private or NHS? I am really after someone who can answer my questions, and help me to address the most debilitating symptoms, physical or mental.
3) The PA Society (brilliant, aren't they?) advised that treatment for diabetes may hinder the B12 treatments. Does anybody know whether this is true?
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BleekerStreet
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Just to let you know that I'm not medically trained.
It's quite common for forum members to report that their symptoms get worse before starting to improve.
I think if you get enough B12 then you should see some improvement in mental health symptoms that are due to B12 deficiency and in dementia type symptoms.
I had dementia type symptoms such as difficulty getting the right word out, memory problems, strange behaviour such as putting car keys in the fridge, loss of ability to do mental arithmetic and others but these disappeared with enough treatment.
The issue for a lot of people with B12 deficiency from PA and other causes in UK is getting enough B12.
How many loading injections did you have?
How often will you get B12 injections once loading injections have finished?
You mention symptoms that would usually be considered as neurological eg brainfog/dementia symptoms.
Do you have other neurological symptoms eg tingling, pins and needles, insect crawling sensations, electric shock sensations, tinnitus, twitching muscles, limb jerks, numbness, migraine, balance problems, clumsiness, bladder control issues etc ?
The link below describes two patterns of treatment for those with B12 deficiency
Make sure that your GP has put you on the pattern of treatment for those with neuro symptoms.
I think there is a lack of specialists in UK who fully understand PA and B12 deficiency. Hopefully someone will see your post and recommend one by private message.
I have read that metformin, a diabetes drug may affect B12 levels. You may want to ask your GP or local pharmacist about this.
I usually urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. If you can't find them online or by searching forum posts then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
See blog post below if you want to know why I suggest this.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK treatment info in book is out of date. See NICE CKS link for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
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 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Thanks so much that is useful information. Quite encouraging, as the memory and concentration problems are impacting on my work. I do have a number of the neurological problems you highlight, and one of my worries was that the NHS website indicated that these might not improve. I joined the PASociety, and it is incredibly helpful. I am very new to this platform so apologies if I am not using it correctly. Thanks again, Peter
If you have joined the PASociety as I did too BleekerStreet you will be getting excellent advice. The forum is great though for being able to compare symptoms etc as Sleepy Bunny points out and the down to earth advice given from the more scientifically knowledgeable members, really makes a difference. Good luck with your journey.
Yours is a story that we see regularly on the forum . You are lucky that you have a diagnosis . Yes, P.A. can have a genetic connection .
If Metformin is used as a treatment for diabetes , it depletes B12 . But if you have sufficient Injections of B12 , it will not be affected as the injected b12 goes straight into the blood and not into the stomach , where the depletion occurs
Overuse of PPIs ( proton pump inhibitors ) e.g. Omeprazole can also inhibit the absorption of B12 . All vitamins and minerals require stomach acid to break down food and facilitate their absorption. PPIs annihilate stomach acid .
PA / B12 deficiency is poorly understood by the medical profession.I know of no specialists of any ilk in this field . We are on our own . You have come to the best place for help .
It would be good to read the books on the subject written by our chairman , Martyn Hooper. There is also an American book by a nurse and her Doctor husband. called” Could it be vitamin B12 “? ( I think that’s the title!) Allobtainable on Amazon.Co.U.K.
Patients often get worse before they get better , so do not worry about that .
You have had your “ loading doses” . You will probably br offered an injection every 3 months now . You will find out by trial and error how often you really need to keep symptoms at bay - and we are all different . They are FOR LIFE . P.A. is incurable .
I need to inject b12 once a week to keep well .i have to self inject because GPs are unwilling to do this l
I will send you a link to some information which you will hopefully find useful .Best wishes .
Brilliant, thanks for the help. I have been on Metformin for about seven years and lansaporzole (or something!) since, I think, 2003, and been over using it having misunderstood the prescription. So these have clearly not helped. Thanks again for your help. Peter
Many thanks. Your condition sounds much worse than mine. I can get out but often feel very poorly and extremely tired. I suppose like most I had so many tests which just showed nothing wrong, when I felt so bad. I convinced myself it was all in my mind. Nearly. Keeping the diary is a good idea, I'll do that. Can I ask for clarification on something - the migraines? I've never really suffered from headaches then had a very weird experience this afternoon. My vision sort of went, and it was as though I was looking at the sea with the sun shining on it, rippled and shining. My normal vision shrank to just the centre of my view, while these ripples were at the side and top. It was quite scary, and I had real nausea and light headedness. After about five minutes I went for a drink of water, which didn't help, and I thought I would faint. I thought it might be diabetes related and had a biscuit, which seemed to help.
When I told my wife, who suffers from migraines, she said it was like the forerunner of a migraine, and I had a bad headache, but definitely not a migraine, for about half an hour a bit later. Then a feeling of being bruised which remains.
Did you mean that your migraines are the result of a B12 deficiency, or did I misunderstand? Thanks, Pete
“My vision sort of went, and it was as though I was looking at the sea with the sun shining on it, rippled and shining. My normal vision shrank to just the centre of my view, while these ripples were at the side and top. It was quite scary, and I had real nausea and light headedness. After about five minutes I went for a drink of water, which didn't help, and I thought I would faint. I thought it might be diabetes related and had a biscuit, which seemed to help.”
I have these too, they are migraines with aura and usually last from 20-30 mins. They are nothing to worry about unless painful when ibuprofen helps.
we’re probably “not allowed” 🙄 to give names or treatments types, but here goes - I’ve been having enormous benefits from a functional medicine dietary specialist R, London Clinic of Functional Medicine londoncfm.co.uk
He goes into detail about all my health and gut issues - very specific tests are taken to identify my unique & specific health challenges and his subsequent treatment plan is then based on this information. He’s a very caring man who takes time to understand your health issues (compared to an overworked GP who hands out a “one size fits all” prescription after a 7 minute appointment)
Anyway if this post reaches you Bleeker, I hope it’s helpful.
I’m new to the forum and newly diagnosed- I’m a pharmacist by background and have been very shocked how little I knew previously, and those in all the health professions know about B12 deficiency, this is through a lack of training.
This is an article you can take to your GP about metformin and b12 that may help you get the ball rolling as it’s a government drug safety alert that they should act on
as you could have been describing my own returning symptoms re. brain fog, etc which, although I’ve been injecting B12 for some five years, seem to have come back with a vengeance under stress.
I’m unable to recommend a specialist but this this article from the GP’s magazine, ‘Pulse’, re. diabetes/Metformin might be of interest :
One of the main problems, according to the BMJ research document, is the lack of any reliable test for PA/B12def.
Therefore, it seems neuro/psychiatric symptoms could be one of the more reliable guides to diagnosis, that is if you have a knowledgeable GP :
Relentless fatigue, dizziness, brain fog, memory problems, proprioception (balance), tingling or numb toes, fingers, unusually angry outbursts, paranoia, etc.
Plus any gut problems, H/pylori, vegan, vegetarian, or low meat diet
Extreme stress or overdoing exercise seems to exacerbate symptoms and, as stated above, many drugs including Metformin, PPIs, etc - can also further deplete B12.
Even though four in our family have B12 deficiency/other autoimmune diseases, one of the main difficulties is unreliable testing, which in today’s climate of mainly test based medicine, is a huge drawback.
This is why so many of us on this forum have to resort to self-treatment to stay sane !
Helpful links below (SleepyBunny lists many more) :
Yes, I think it is my favourite, although I love Paul Simon's work in all its forms, and the way it has changed over the years. Seen him a few times live, plus twice with Art Garfunkel. Incredible. Thanks for the link, I will have a read. I sort of feel relieved and anxious. Although early in the process, it worries me that so little seems known about the condition, but equally relieved that it is not dementia from which I'm suffering. I had convinced myself that it was!
Thanks, yes my doctor confirmed this during this morning's appointment with him. He says it is better to keep on the Metformin and accept the side effects.
how sad he is unaware that b12 deficiency, low b12 neuropathy and other symptoms from low b12 are very serious. Original name for low b12 from autoimmune reasons is fatal anemia aka pernicious anemia.
I had many cognitive issues when I was undiagnosed. Memory - both short and long term, word-finding, intense brain fog, sometimes slurring words, being in the middle of a sentence & having no clue where I was going with it. Missing complete words when typing, and not even finding them on an edit.
They have all completely alleviated with b12 shots. Some instantly in the loading period. All within a couple of months.
But I did go rogue immediately with shots. And self-injected every other day for close to a year, until there were no more improvements. I knew my GP would be totally against it, I did not even bother to inquire. I still took my monthly shots at the office (cyanocobalamin, Canada). When she argued that eye issues (double vision, change in sight) were 100% not b12, I looked at her and knew I had to go rogue as it was not her health in peril. They are documented b12 issues and they too alleviated with shots after occurring for quite a length of time.
Also, you might - and chances are good - get a ton of erroneous nonsense from doctors about b12 deficiency that will adversely affect your care. And that includes specialists, they are not immune. Retesting, going on about the dangers of too much b12 and as I have shown you - not knowing the documented symptoms and wasting our health care dollars on other doctors and tests..So please read these concise and informative links, that contain medical footnotes (Edit: Sleepybunny has posted a few of these, but they are like gold so good to have them in one place) - stichtingb12tekort.nl/engli...
Also, when time has passed, and if some things do not change be open to the possibility that other issues are occurring. That does not mean you do not have PA, it simply means over time (not in the beginning) there *might* be something else going on in tandem. I started to miss words in sentences again & have brain fog return and it was my thyroid, not b12.
But at the same time some symptoms can take years. There are. a few of us that discovered years in that we can indeed feel the pain of something being too hot to touch again (nerve endings coming alive as before we could easily carry hot items). So some issues can take a bit.
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Have you had your vitamin d and folate checked? These deficiencies can come at the same time.
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Diagnosis 
Recently diagnosed coeliac and PA.14yrs symptoms.Long fight 4 diagnosis.
Average diagnosis time
