Hi I am new to this forum so please bear with me. Although I have suffered with strange symptoms for many years I eventually diagnosed myself as having peripheral neuropathy. Subsequent blood tests showed that I was "borderline" or "within the normal range" for B12. Luckily my GP started me on B12 injections 18 months ago. During the lockdown I went eight weeks past my due injection date and because of the increased symptoms I started taking supplements. Blood tests then showed my level as 400 (but I didn't mention that I had been taking B12 tablets!) I finally received my injection last week but symptoms have worsened if anything? In addition to increased nerve pain in feet and legs, constant dizziness and blurred vision, I am now having new symptoms ie frequent occular migraines (flashing zig zags with headaches) very itchy scalp! and disconcerting brief bouts of "wooziness" with total blurredness of vision. My questions are: 1. Why does the "normal range" level vary between some countries 2. Would some people need a higher "normal" level than others?? 3. Does anyone else recognise the new symptoms described above? Thanks in advance for any replies. M.
New symptoms: Hi I am new to this forum... - Pernicious Anaemi...
New symptoms
I have similar symptoms but not diagnosis looking for answers.
Hi Thank you for the message. It was actually your post which prompted me to join this form and post my message. 
I probably share about 20 of your symptoms … I hope we both get some answers? M.
It’s horrible isn’t it having a condition and nobody knows what it is , how long have you been suffering for , they tell me it fibromyalgia but I don’t think that’s the case that is a diagnosis of exclusion and I don’t think Iv been tested extensively at all, I’m 31 female been suffering since the age of 21 with no answer .
Hi I'm a lot older than you (68 - OMG that makes me feel so old!) but reckon that the symptoms started when I was about 30. Unfortunately at that time there was no internet to refer to and I felt my symptoms were too "strange" to go to a GP with! (Could only describe it as my fingers and toes feeling "agitated".) The symptoms weren't affecting me too much at that point and I have remained healthy and very active, until different symptoms started to appear !
I only went to the doctor about 5 years ago, when things got worse, and blood tests were carried out with "borderline" B12 results . Injections did seem to help at first but I'm not totally convinced that B12 deficiency is the primary cause, particularly with the "newer" symptoms. It doesn't help that there could be so many other reasons for the same symptoms! I do hope you get some answers soon.
Your not old , I lost my mum to covid in June she was only 55 😞with all the stress and these symptoms doesn’t help at all , my dad is on b12 injections he just turned 72 his symptoms were loss of balance strange pains but his test results proved he was low, good to have internet but then you have so many broad possibilities it’s impossible to say it’s just that , I hope you find answers too I will keep everyone updated if I do ever find the cause.
Sorry dad is 62
Hi I'm so sorry for the loss of your mum, at such a young age. I also lost my mum during the lockdown in April. She was 94 and we had been nursing her in her own home for some time, where she always wanted to be. Although she was a good age it is still a heavy loss. Very best wishes to you and your dad and thank you for responding.
1. The normal range differs between different labs, not different countries. In Hull 115 pmol/L is the bottom of the normal range. In West Sussex it is 180 ng/L (135 pmol/L). Health Education England reckon 158 pmol/L.
You may have read that the lower limit in Japan is 500. That is a myth. Here is what the Japanese government says - ncbi.nlm.nih.gov/pmc/articl...
"If serum vitamin B12 levels are <200 pg/mL, vitamin B12 deficiency is very likely. If serum vitamin B12 levels are >300 pg/mL, vitamin B12 deficiency is unlikely."
So their lower limit is about 150 pmol/L.
In fact the lower limit is also 500 in the UK, according to another misleading website - clancymedicalgroup.com/vita...
Note that most of the sensible labs will include a grey area, like the Japanese quote.
2. Some people definitely need for B12 than others. Some need daily injections, some are fine on one every three months. Nobody knows why, but the PAS are involved in a study looking into it. Preliminary results say they've found something. They're just not sure what it means.
3. I've not heard of those symptoms being associated with renewal of injections.
You say you 'self diagnosed' peripheral neuropathy and you seem to have assumed that it is caused by low B12. There are over 80 possible causes of such neuropathy and B12 is just one of them. You really should see a neurlogist to find out for sure what is causing the neuropathy.
Hi Thank you for the reply and helpful information. It does seem rather confusing with different levels. To clarify, the GP did confirm my self-diagnosis of peripheral neuropathy and my first B12 blood test at that point gave a reading of 180 ? which I was told was "borderline" , but started my injections which helped for a while. Also, to clarify further, my "new" symptoms occurred before having the delayed injection last week but are still continuing/increasing. My medical record states "pernicious anaemia" as a diagnosis. My GP has now referred me for some further investigations. Thanks again.
Yes, diagnosing peripheral neuropathy isn't difficult. ("Doctor I have pins and needles and numbness in my hands and feet". "Ah, you have peripheral neuropathy".)
Diagnosing the cause of that peripheral neuropathy isn't quite as easy. Mine stumped one neurologist, so he sent me to an expert in London. The expert got it (after an hours examination, loads of blood tests and some nerve conduction studies).
That's why I recommend anybody with peripheral neuropathy to see a doctor. If it is caused by a B12 deficiency then it's great. If it isn't then you may want to catch it as early as possible.
Reading your post leaves me feeling that your current symptoms are as a result of your injections having been stopped, rather than being due to them restarting.
If you’ve been diagnosed with PA taking oral supplements won’t make much, if any, impact as you need injections.
If the original course of loading doses helped you’d I’d be talking to my doctor about having these again. As you have neurological symptoms the every other day injections should continue until there’s no further improvement and at that point they should reduce to every 2 months.
If you’ve previously been having regular injections it seems to me that a level of 400 is very low. I had a test after starting regular injections and my level was >2,000 (ie above the measurable range) and I’ve read other posts on this forum where others have had similar high levels. At the end of the day though, once you’ve received injections your level should no longer be tested as the result is meaningless.
Hi and welcome.
You're in a very good place. If it wasn't for the great people on here, I don't know where I'd be now after my diagnosis of PA.
As fbirder said regarding the Neurologist. After seeing a neurologist & then having nerve conduction tests, I was diagnosed with small fibre neuropathy which is nerve damage in my feet.
To answer your question about the silent migraines, mine started suddenly before being diagnosed with PA. I suffered from them very regular. Since being treated for PA over 2 years ago though, I haven't had any.
I also agree with JanD236 regarding your injections being stopped more than likely being the cause.
Also, many times, symptoms will get worse before getting better.
Good luck.
Hi Thank you so much for your reply. It is certainly helping me already to receive such helpful information. I am going for an MRI scan soon due to severe nerve pain from my neck, shoulder and arms(s). I can see now that this may all be related?? Scarily I have seen that neuropathy can actually also affect heart rhythms - I was rushed to hospital last year after a routine ECG and actually had a pacemaker fitted? I don't want to jump to conclusions but it does make me wonder about the cause? Unfortunately I now realise that I have suffered "strange" neurological symptoms for many years but never consulted a GP until more recently, because I though they were just too innocuous? Thanks again.
Flashing lights in zig zag patterns, spider web patterns, lightening patterns, looking through a veil, should always be checked out immediately (urgently) by an optometrist or ophthalmologist as it can indicate serious retina damage may occur. Please get it checked out - you don't want to mess around when it comes to your eye sight. I don't know where you live but if you tell your local orthoptist, optometrist, ophthalmologist that you are experiencing those flashes they will see you immediately.
Hi Thank you for your reply. I appreciate your advice. I did go to have my eyes checked 4/5 weeks ago due to the blurred vision. They scanned Behind my eyes and all looked Ok. All the symptoms I described seem to be easing (fingers crossed) so it could be due to the B12 injection kicking in now? If symptoms don’t continue to ease I will do as you suggest.
Oh thank goodness! I worked for an Ophthalmologist at one stage, and have also had the flashing lights, zig zags myself - so I know how scary it can be! The zig zags can be a symptom of detached retina which is an urgent condition, or it could be a vitreous detachment (which is what mine turned out to be), or it could be a weird migraine symptom... I also got another condition at the same time called Iritis (Uveitis) which has been a real pain to deal with. Fingers crossed your vision calms down and all is ok for you. I wonder how much PA effects the eyes - maybe I should be self injecting more....
Thanks again for taking time to reply. I’ve just had to google “vitreous detachment” and Iritis - both of which sound quite nasty so I hope you are fully recovered now? My symptoms do seem to be easing ,(fingers crossed) vision is clearer, no dizziness nor flashing zigzags. I did contact my GP who said these were probably migraines,( which I had not had previously) but then found that they can also be linked to B12 deficiency. I am still getting my usual tingling/pain in toes, and Lower legs at night though ? I am wondering which painkillers are best to take for these symptoms if anyone can advise? Thanks.
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