I have had PA for 20 years and have B12 Injections every 3 months but still have had over the year’s symptoms of PA such as constant tiredness, weakness, forgetfulness and brain fog. More recently I have been getting burning feet (mainly at night) 2 constantly numb toes and pins and needles in the side of my left hand and finger along with being lightheaded, breathlessness and palpitations I am wondering if this could be related to my PA and if I need to have my injections more regularly? I have only just discovered this site and was not aware of the support that was available as none of my GP's have ever given me any help or information on my condition.
Can Neurological symptoms develop yea... - Pernicious Anaemi...
Can Neurological symptoms develop years after being treated for B12 deficiency
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Lilac03
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clivealiveForum Support
Hi Lilac03 how often of what form of B12 injections are you on now?
If you are in the UK with the symptoms you are recording you may be able to have injections every eight week. per the BNF Guidelines for Hydroxocobamalin.
bnf.nice.org.uk/drug/hydrox...
I am not medically trained but can confirm having all of your above symptoms at various times and I've had P.A. for over 47 years.
I wish you well
Hi clivealive I have Hydroxocobalamin 1mg injections every 12 weeks and have had this amount since I was diagnosed I do live in the UK and I have shared my concerns that I was still getting symptons with my GP on several occasions but was told that my levels were okay. But I feel like my symptons are getting worse now.
Thank you for the link.
There are over 80 possible causes for the peripheral neuropathy listed in one of the books I own. You need to get a referral to a neurologist.
I have made an appointment with my GP so hopefully she will refer me.
I used to put referral requests into a brief, polite letter along with evidence that supported request eg symptoms list, test results, personal/family medical history, extracts from UK documents etc.
Having one auto immune condition PA increases the chances of developing others. I hope the GP and any specialist you see exclude the possibility of other auto immune conditions that may cause the type of neuro symptoms you are experiencing eg diabetes, thyroid disease, coeliac disease, lupus, Hughes Syndrome (also known as Antiphospholipid Syndrome APS) etc
There is a very active Thyroid UK forum on HU, I suggest you put any thyroid results on there.
Coeliac disease
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Are you on any medication that may interfere with B12 and/or folate levels?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
Hi,
Have you been referred to a neurologist and a haematologist?
It's important to exclude other possibilities for your neuro symptoms besides PA.
With multiple neurological symptoms I would have expected you to be on following treatment pattern if you are in UK
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
"have B12 Injections every 3 months"
You seem to be on treatment pattern for patients without any neuro symptoms and even that pattern changed recently; it now says
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
GP can find the info they need in their BNF book Chapter 9 Section 1.2
BNF info is also online.
What neuro symptoms did you have before diagnosis?
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
Link about writing letters to GP if under treated for B12 deficiency with neuro symptoms
b12deficiency.info/b12-writ...
Vital to get adequate treatment or there is a risk of permanent neurological damage
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
"have had PA for 20 years "
Are you a member of PAS (Pernicious Anaemia Society)?
They can suggest useful info to pass to your GP.
Might be worth joining and ringing them if not already a member.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
There may be a PAS support group close to you.
B12 Deficiency Info website
Above website has a lot of detailed info about B12 deficiency.
"none of my GP's have ever given me any help or information"
Help for GPs
1) PAS website has section for health professionals which your GP might find helpful.
pernicious-anaemia-society....
2) PAS members can access useful leaflets/articles on PAS website eg "An Update for Medical Professionals: Diagnosis and Treatment "
pernicious-anaemia-society....
Some forum members pass these to their GPs.
3) PAS members may be able to arrange for their GPs to talk to PAS. Would need to discuss this with PAS first.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
I also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I am not medically trained.
Hi sleepybunny, I have had PA for over 20 years and my injections have always been the same every 12 weeks. I did not have any Neurological symptoms when I was first diagnosed. These symptons have developed recently over the last 6 months and I wondered if they may be connected to my PA.
Hi,
"weakness, forgetfulness and brain fog"
These would usually be considered as neurological symptoms so if you had them before your treatment started I would have expected you to have been put on the treatment regime for those with b12 deficiency with neuro symptoms.
There is huge range of possible neurological symptoms that can be associated with b12 deficiency. Have a look at links below.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Some of these I experienced in the past and some I still have...
Brainfog
Confusion
Going mentally blank when talking (this one still happens)
Migraine
Tingling
Pins and needles
Insect crawling sensation (formication)
Tinnitus
Numbness
Weakness in limbs
Dystonic symptoms ( google Dystonia)
Muscle twitches
Muscle fasciculations (wave like muscle contraction, feels like something is wriggling under the skin)
Muscle spasms
Memory problems
Confusion
Word finding problems
Restless legs syndrome RLS
Periodic Limb movements
Clumsiness
Bumping into things
Dropping things
Daft behaviour like putting keys in the fridge and boling the kettle without any water in it.
Problems with proprioception ( problems with awareness of body in space)
Proprioception is harder to explain than some symptoms but I became very unbalanced if in the dark or with eyes closed or if I lost sight of my surroundings. I used to fall off the pavement if someone walked directly towards me. I also used to misjudge where things were when reaching for objects...smashed crockery as a result..
Have there been any changes in your hearing or eyesight?
Nerve damage due to B12 deficiency can lead to changes in hearing and eyesight.
The reason I've mentioned all these symptoms is that I'm wondering if you have been under treated for a number of years and the increase in neuro symptoms is because of slow deterioration reaching a point where more symptoms become noticeable.
As you were diagnosed 20 years ago I'm wondering if the treatment regime was different then but I think it was the same.
Blog post explaining the history of how typical treatment pattern of 3 monthly jabs was arrived at.
b12deficiency.info/blog/201...
PAS were involved in some research and for it they needed to find a group of people with confirmed PA who were okay on the standard 4 injections a year and they really struggled.
martynhooper.com/2016/02/17...
The proprioception problem is very often noticed in the shower, when washing your hair.
Your sense of balance relies on three inputs - your eyes, the balance organs of the inner ear and the body's own sense of the position in space of various bits (proprioception).
When you close your eyes you shut off one of those inputs. When you tilt your head back it disturbs the balance organs. That just leaves the proprioception. If that's not working then you stand a good chance of falling over.
I have to have one elbow touching a wall of the shower when I wash what's left of my hair. Amazingly enough, that one reference point is enough to compensate for the total lack of input from my eyes and positional sensors in my feet and lower legs.
The most common cause of peripheral neuropathy is said to be diabetes. An interesting article from John Hopkins I just read says that prediabetes can be just as bad for the nerves:
“What’s so interesting,” Hoke says, “is that we see damage that is just as bad in prediabetes as in diabetes. That suggests that it isn’t the overall amount of glucose that is causing the neuropathy, but instead that it’s rapid fluctuations in glucose levels. There’s something about those fluctuations that the nerve cells can’t tolerate.”
So it seems important to keep an eye on the glucose levels too and to eat wisely. They even recommend pain killers to make exercise possible because it's so important for glucose levels.
I wonder if people with PA might be extra sensitive to peripheral neuropathy from other causes.
There's been several studies looking into the effect of B12 on diabetic neuropathy, with no good results. ncbi.nlm.nih.gov/pmc/articl...
I suspect that early studies that showed some positive results may have been treating neuropathy caused by the B12 deficiency that can happen with metformin treatment - before such a link was widely known.
It seems that they only looked at studies using up to 2 mg oral b12 daily, which is considerably less than the 5 mg tablets some take, and a lot less than for example three 1000 mcg injections a week (because of the very low uptake from pills). So maybe the jury is still out?
I've read somewhere that nerves are very sensitive to cyanide, so I can't help wondering if the minute amounts of cyanide in cyanocobalamin could have some negative effect in people with peripheral neuropathy even if it's well below toxic levels.
5 g injections of hydroxycobalamin is used for cyanide poisoning, so perhaps 1/5000 of that (1000 mcg) could give some small relief for damaged nerves by reducing normally occurring cyanide levels in the blood, possibly elevated by pollution. The smoke from one cigarette for example contains 0.1 mg cyanide, and I've read somewhere that smokers excrete more b12 as cyanocobalamin in the urine than non smokers, supposed to come from other forms of b12 binding to cyanide in the blood.
It would be interesting to see a study on PN that compared hydroxy- and cyanocobalamin, and used injections rather than tablets, to see if that could alleviate any peripheral neuropathy symptoms.
(Actually, it says they tested up to 1,500 mg of metylcobalamin a day, but I can't help wondering if that's a typo.)
palmier, I have never come across anything suggesting that cyanocobalamin contributes to neuropathy, unless the individual concerned has a rare genetic disorder called lebers syndrome.
As the underlying mechanism for diabetic neuropathy is cardio-vascular I suspect that (as suggested by fbirder) any studies showing B12 helped were down to patients who actually had neuropathy related to B12 deficiency but because of the overlap in symptoms it had been assumed that the neuropathy was diabetic. Metformin is the most likely cause of the B12 deficiency but as the cardio-vascular effects of badly controlled diabetes can also affect the gut and cause absorption problems along the gut it is unlikely to be the only mechanism.
Ok, there's so little cyanide in cyanocobalamin that it shouldn't matter, especially since it's bound to b12. But there's still a possibility that other forms of b12 could reduce cyanide levels in blood. I feel so much better from my methylcobalamin tablets than my cyanocobalamin tablets. I wonder why.
It's such an individual journey hey, and what works well for one person may not suit another. Methylcobalamin for me is like poison, react badly and can put my B12d healing back weeks and weeks, there are others that have the same reactions. Cyanocobalamin tablets (I have 100mcg daily) and Hydroxocobalamin injections work well for me. Who knows why, but being on this forum gives such a wonderful perspective on how individual each of us truly are. 
hydroxocobalamin is the one that will reduce cyanide levels.
Different people respond differently to different types of B12 - as per YogiGreg below - not everyone gets on with methyl
Ok, it's hydroxycobalamin that is used against cyanide poisoning. But I think cyanide binds stronger to b12 than methyl (cyanocobalamin is the most stable form) so I perhaps it could have an effect. Not sure what happens to methylcobalamin in the body, when or how or if it loses the methyl. I really don't know.
The methyl part is taken off in the blood when B12 combines with a protein to become holotranscobalamin II - the form that is able to pass into cells. Once in the cell the holotranscobalamin is split back down into protein and cobalamin and then combined with methyl or adenosyl depending on which is needed by the cell.
Each step is controlled by genetic code and variants on these codes can make that step run less efficiently - but I don't think everything is totally understood at the moment.
Thanks. I wonder though what happens when you take large doses of b12, if there are enough transport proteins to bind all of it. A serum b12 of 1000 ng/L corresponds to about 5 mcg total in 5 litres of blood. So what happens if I absorb about 50 mcg (1 %) from a 5000 mcg tablet? Will all be bound, or will some of it be free?
palmier - I'm aware that this has got rather away from the original question that was asked by another forum member which means they are suffering from receiving notifications that may well not be relevant to them - so would ask that you start a separate thread of your own if you have other questions.
There is a limit to the ability to bind and transfer B12 to cells. In general excess B12 is removed by the kidneys and passes out in urine. Exact rates vary from one person to another but they are also higher if the amount of B12 in your blood is higher.
Here's a study that uses 500 mcg injections of methylcobalamin three times a week for the first four weeks followed by 3x500 mcg tablets daily for eight weeks. It shows a positive result on diabetic neuropathy!
ncbi.nlm.nih.gov/m/pubmed/1...
Again, it is a study done before the link between metformin use and B12 deficiency was well known (even though it's been recognised since 1969). As far as is possible to tell from an abstract, this study did not check the B12 status of the volunteers before treatment, so it's entirely possible that their neuropathy may have been caused by a B12 deficiency.
The fact that you’ve had constant tiredness, weakness, forgetfulness and brain fog over the years suggests to my non-medical self that you need more frequent B12 injections.
Guidelines have recently changed to say that injections should be given every 2 or 3 months and if it were me I’d be asking my GP to increase the frequency to every 2 months. This may be enough to help but if not it’s worth asking for more frequent again (my GP let’s me have a monthly prescription for B12 although I know that not all GPs would be amenable to this).
As far as the neurological symptoms are concerned these could also be as a result of your B12d being under treated. However; as already mentioned, there are other causes so this should be investigated by a neurologist. If nothing else is found though I’d be arguing for more frequent B12 injections as this may be what’s needed.
Do you also take a multivitamin as the B12 needs other vitamins to help it work?
I completely agree with you!
One injection every three months isn't much, because apparently you only retain 30 %, that is 300 mcg, of a 1000 mcg hydroxycobalamin injection. Spread over 90 days that is only 3.3 mcg a day on average. Given that people with PA lose extra because of less reabsorption of b12 from bile, the 1000 mcg injection every three months doesn't give any margins to speak of. It's not surprising if it's not enough for people with PA with peripheral neuropathy symptoms.
Sounds to me as though you need more regular injections . If you read the posts on this forum , you will have noticed that many of us have
To supplement injections . I need to self-inject once a week to keep symptoms at bay . . You cannot overdose on B12 injections . . But it’s best if you try to get extra injections from your GP . If you fail to get them , ( Most GPs and the medical profession in general , have poor knowledge of PA . ) So if you fail to get extra injections , I feel you could consider self -injection . Sound daunting I know , it it has changed my life . We can tell you how to obtain the B12 ampoules ( from online German pharmacies ) No prescription is required in Germany , unlike in U.K. . All injectables are prescription only in U.K. Syringes and needles etc are obtainable I’m UK .Its not expensive - about £1.20’ for an injection - everything included . I wish you all the best in trying to get extra injections . New guidelines state that injections of B12 can be given 2 monthly now to PA patients ., even without neurological symptoms being present , so you definitely qualify . 👍 PS Also important that you take a folic acid supplement —say a modest 400 mcg( vitamin B9) or eat good quantities of green leafy vegetables ( folate - Vitamin B9) B9 works together with B12,
Unfortunately, our GPs no longer take any individual interest in their patients. They're too overwhelmed with patient numbers and statistics. My GP is okay and has called me occasionally when the need has been. But individuals have to prompt, request, remind, etc...
I have same symptoms as you, along with trying to manage Type 1 diabetes for over 43yrs and the B12 I also have rarely makes any difference. I also have heart issues going on as well, where I'll be having two valves replaced when they decide to do it. I also suffer with chronic tinnitus which and hearing difficulties which exacerbates everything what's going on.
So I'm not sure if any extra B12 is your's or even my answer to the problems associated with our symptoms...
It may not help you to have extra B12 injections /tablets , but at least you know that there is no harm done even if you inject daily . So it’s worth a try .
You cannot overdose or have any harmful effects no matter how often you inject /supplement , which is good to know .
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