In sept 2020 after suffering with deteriorating blurred eyesight for several months i took a trip to my local opticians. Expecting to be prescribed spectacles and the problem fixed. Instead, after being asked to read the letters from the test and replying "what letters?"i was referred to the emergency eye dept of my local hospital.
The consultant at the hospital asked me about any other issues. I informed her of problems - pains and numbness in my feet, legs , knees, abdomen and lower back. I was sent for blood tests and was informed that my b12 level is below 140.
I have a fear of injections/needles so i take vitamin b12 in a 1mg (1000 microgram) tablet form (plucked up the courage to have a blood test but cannot see myself doing this every day !)
My GP informed me that i will need to take these tablets for the rest of my life.
I get very agitated , forget words and my short term memory is not as consistent as it once was. The world further than 10 yards in front of me is just a blurred mess and i can no longer read without the aid of zoom also using1100x magnification on windows magnifier.
also started to feel a burning indigestion type of pain if I eat fried foods.
what i would like to know is if anyone out there can offer advice on if these are regular complications and if people have seen these kind of issues improve.
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klopptinho
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B12 injections are definitely the best way to get B12 into your cells . . I will send you details of a device called an auto -injector which might help you get over your needle phobia . I think that would be the best step towards improving your symptoms. Also important to have good amounts of folate ( Green leafy vegs ) Take a modest Folic acid tablet daily ( 400 mcg ) It acts together with B12
Ideally you would have injections at your GP surgery . First loading doses ( 6 over 2 weeks ) Then an injection every other day until no further improvement . After this an injection often enough to keep symptoms at bay . This varies from patient to patient . I need to inject weekly .
high dose oral is going to be a very slow way of increasing your B12 levels.Have you talked about the possibility of some therapy to help you overcome your needle phobia?
PA and B12 deficiency are often associated with lack of stomach acidity which is likely to be the cause of your problems with food. Many of us find that drinking something acid helps to relieve the symptoms - though if it is specifically fried food then you might want to consider avoiding fried food
All the symptoms you mention are symptoms of B12 deficiency - B12 is used in a lot of processes that go on in your cells and if damage has resulted from B12 deficiency then it will take a while to heal - if your nerves have been damaged then that can take a few years to heal once your cells have enough B12. If the deficiency has gone on for too long then the damage can become permanent.
If you are taking methyl cobalamin and anxiety is getting worse then you may want to consider switching to cyanocobalamin tablets (unless there is a family history of lebers syndrome).
Problems with vision are also quite common.
You could try taking several tablets a day spaced out which should build up levels quicker but even then it is going to be very slow - the average for passive absorption is 1% of the dose given, which would be 10mcg - which is generally only sufficient to be a maintenance dose (ie for use after injections have raised levels.
People vary a lot i how much they absorb in this way and high dose oral seems to be very ineffective for some people.
I really do think that your best option is to look at some therapy to overcome your needle phobia so you can have loading doses, then see how you get on with the high dose oral.
As others have said, B12 injections are likely to be quickest way of raising B12 levels in your blood.
I think that effective B12 treatment is when symptoms are kept at bay.
If treatment is denied, delayed or inadequate there is an increased risk of permanent neurological damage.
I was left for years without treatment and in the end had to resort to treating myself. I tried high dose oral but continued to deteriorate. When I started to self inject, my symptoms finally started to improve.
I suggest you keep a symptoms diary which tracks changes in symptoms over time and if and when any treatment is received. This could be useful evidence to show your GP of improvement or deterioration in symptoms.
I do hope that oral treatment works for you.
Some links I post may have details that could be upsetting so you may want to read through this with someone else.
Link to NHS leaflet about overcoming needle phobia.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Thank you for all the help and information as it is greatly appreciated!
somethings which i inadvertently omitted are:
when i was 11/12 years of age (i am now 40) i had x-rays on my knees because i suffered from 'cracking' bones and was far less mobile when playing football. The x-raysd showed nothing significant and my GP put it down to growing pains. The pains i had then are still the same today.. so i do wonder if it is possible this was an early symptom. Most likely something that wouldn't be considered at the time.
About 10 years ago i started to get what i thought was cramp in my left foot/toes - this has since been attributed to a lack of b12... as well as pins n needles in my left lower torso. the first of which i blamed on a broken toe that hadn't been treated from years before adn the second i blamed on the sofa!
I have been told in the first conversation i had with my GP that the neurological damage will be permanent - whilst i can accept this is probably true i don't see the point in giving up and saying "woe is me".
so it is great to read positive people with ideas and information on fighting back and trying to relieve symptoms.
i was offered counselling with regards to what happened and happening to me but as i told them.. it feels like the family and support networks we have arounds us are the ones that need this to better understand something they cannot see
I'm in UK and my B12 deficiency symptoms were unrecognised for many years. Even when I finally worked out what was wrong with me the NHS refused to treat me (long story). By the time I started to treat myself I had had major symptoms for over 10 years and many years of deteriorating prior to that.
I am still improving almost 10 years after starting treatment although rate of improvement has now slowed right down. Because I had been left untreated for so long, it took many weeks even months of very regular injections to start to see clear improvement.
Looking back to how I used to be I can't believe sometimes how far I've come.
I continue to need far more B12 than NHS will give although I at least get some NHS treatment now. My symptoms start to return within a few days of an injection.
I do have some symptoms that I think are permanent.
My partner is suffering at the moment, and like you his knees crack on trying to stand, also had problems years ago with big toe ... told it was arthritis... (rubbish),Now has severe sciatica. His b12 was low 4/5 years ago treated with tablets (useless). Eventually got him 1 b12 injection even though he passed the dementia test ( a criteria in our area for b12 injections) I have given him injections since. Had x ray last week and radiographer did say it looked as though he has a slight curvature of the spine., but was suffering from sciatica. To be honest he can't go on as he is going as nothing is helping.
I understand how he is feeling as I had the same years ago, but at the moment even though I sympathise with him I feel helpless !
Believe me you are not the worse. But for neurological symptoms you need slow release in very high dose like 15000 mcg a day or liquid b12 in water to drink whole day. You need injection which is termed as loading dose because overflooding B12 can help reach most cytoplasm in our body. Just 2 percent bget absorbed but it's a necessity to inject bif you have neurological symptoms. Read nice guideline. You can find links in other posts mostly sleepybunny publish those links.
I also have a fear of needles. I almost passed out the first time I self injected. The auto injector Wedgewood mentioned has been a god send for me. Here is the link to their website.
Hi klopptinho. 👋 I have the opposite ( high B12) but with also blurred vision. When there is high or low levels in vitamins thats the sign that's telling you something. I have HIGH B12 because recently, after searching for more than 20 years due to a continuing chronic fatigue, labs showed i have EBV (Epstein Barr Virus). B12 is going up, spleen and liver are affected. When i did a deep search, B12 is managed in the liver, and spleen cleans blood as the liver too and there is worked also the immunity of the body. EBV replicates and attacks the pleen, so the spleen cant help heal my boby and put EBV to sleep. Through naturopath im doing the fight of my life to put EBV dormant because one you have EBV it never leaves. 92% of the population has EBV either Dormant or Active. I have it active. The difference is that if it stays DORMANT won't bother your health. If it wakes up and becomes active, it will replicate and make your life an inferno until you step up, notice it and do something about it. God bless🙏
And also your blured visión is no problem in the eyes perse. The blur is advising something wrong in the systems. When it's addressed, the blureness will leave
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