Hello everyone. Im new here. Why are my serum B12 levels normal, and yet I am getting worrying neurological symptoms.
I have B12 injections and have had for some years and have been having increasingly worrying symptoms, which led me to request that I get my injection earlier (currently 3 monthly). This resulted in GP sending me for blood tests, and it looks like my Serum B12 has come back normal - it says 540 ng/L.
However, I am really worried about the neurological symptoms I am having in addition to the eternal fatigue, balance issues.
I have visual problems which are scaring me. Double vision, blurry vision etc. I have checked this out with optician three times, and all is well from an opticians viewpoint. I have optical (aura) migraines too - sometimes 3/4 per week.
I have heavy arms and occasional legs too.
Has anyone else had similar issues with "normal" range but a host of problems which seem related to B12 deficiency.
I believe my GP is going to take me off my injections all together due to fact that the serum level came up normal.
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Dancers1
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I would have expected your levels to be higher than they are , given that you are receiving injections . Your levels need to be high . Once you have commenced injections it is a waste of time to test your b12 levels . This is written in the guide lines . So ask your doctor to consult the latest guide-lines
. It sounds as though you need more regular injections of B12 . , not less of none at all ! It is honestly a scandal of huge proportions that most of our doctors have such poor understanding of P.A. You need to receive injections often enough to keep all symptoms at bay , which is not happening at present . You need more injections without a doubt . If you cannot get them then you will have to do what most members of this forum do , and start self-injecting . This is easy and cheap . You can get the information that you need here . Best wishes .
Try eating a lot of leafy greens and taking folate. Do you know what your folate level is? Also low vitamin B1 will have the same symptoms. I agree your B12 is still low.
Thank you so much for your response, and the information.
Indeed, thank you to all.
I am new to these sites, and struggling to find out how to reply to everyone.
Do you know how to get an Active B12 test ? I think I am going to order over the internet.
I have just had a telephone call with GP, who dismissed my B12 queries, and said all is o.k. He has, however, said that he wants a face to face as I persisted with my other issues re vision, migraines, balance etc.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of b12 deficiency. I suggest you try to track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links. It's good to know what you are up against locally.
Some of these local guidelines have been posted on forum so may be worth searching forum posts for "local guidelines".
Hope you are not in the UK area mentioned in blog post below.
Some forum members keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is given. Can be useful evidence of improvement or deterioration in symptoms to show GP/specialist.
I've written some very detailed replies in the threads below which may have B12 info you will find useful eg causes of B12 deficiency, books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
If you have a B12 absorption problems then serum B12 test is a long way from telling the whole story and your GP would be wrong to act solely on that test. One of the conditions that is necessary for the normal range to apply is that the patient concerned hasn't had a B12 injection.
An injection will raise your levels to well above normal range and then it will gradually fall over time but the rate at which levels fall varies a lot from individual to individual. The early studies showed that in some individuals this time period could be well over a year - unfortunately these studies don't report whether the patient was well during this period - I suspect the answer is no but there is just no proof either anyway.
Whilst your body may use some of the B12 to replenish stores of B12 in the liver the mechanism that releases this back into your blood is broken if you have a B12 absorption problem, so stores of B12 are irrelevant and you are dependent on the amount in your blood.
Many people find that they need to maintain levels well over the top of the normal range after they have been placed on injections to function - mine are permanently over the measurable range.
It is worth asking for a referral to a neurologist. Although B12 sounds the most likely explanation there is a chance that something else is going on, and it may be that the neurologist may be more aware of B12 than your GP - though there is no guarantee of that. At the very least they will be in a postition to request MMA and homocysteine levels.
The BCSH guidelines state that checking B12 levels post loading shots isn't needed and injections would be for life.
It may be worth suggesting to your GP that he takes a look at the area of the PAS website specifically geared to helping medical professionals improve the diagnosis and treatment of PA.
Some of the symptoms you describe could possibly be thyroid related.
If you have any thyroid blood test results, it may be useful to post them on the Thyroid UK forum here on Healthunlocked and the members will comment on them.
Also have a read of some of the previous posts; there's lots of advice about what blood tests you'll need to get and how to get them as gp's generally don't do all the testing that's needed.
I use both forums and have had great advice from other members; they are very knowledgeable and helpful.
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