Is there a testing method that has been shown to be accurate for determining functional B-12 Deficiency. I am currently on a monthly injection regimen. Here are some recent bloods:
July 2018 - B12 - 983
Sept 2018 - RBC Folate - 2676 nmol/l
Sept 2018 - Homocysteine - 6 umol/l
Sept 2018 - Methylmalonic Acid Serum - 87 nmol/l
Unfortunately in Canada there is no standard protocol such as the UK's NICE guidelines for treating B12 deficiency. I was originally diagnosed about 9 months ago with a level of 153. I have seen very little improvement since injections started and have regressed in many areas.
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elvistoronto1
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Being in Canada is a fortunate thing for you. You can buy injectable B12 and syringes without a prescription. You just have to ask the pharmacist for them.
I know monthly injections of cyanocobalamin didn't work for me either. I need weekly injections for them to be effective. You might be similar.
The recommended test for determining functional B12 deficiency is Methylmalonic Acid Serum (MMA)...which I see you've listed above.
You don't quote a reference range but if your result is within the reference range quoted in your results, then thismsim of and it's therefore highly unlikely that you have functional B12 deficiency.
Bio lab.co.uk state that being below 280nmol/l is within the reference range for healthy people under 65 (360nmol/l for those over 65)...so even given that testing equipment is calibrated locally and may change this level slightly, your result of 87nmol/l is well,under anything that could be considered significant (in terms of showing a faunction deficency).
Here's the link to Biolab in case you want to check it out:
>Monthly injections may be insufficient to get and keep you well - particularly if neurogical symptoms are involved. In the UK those with neurogical symptoms receive an intensive regime of injections (every other day until no further improvement - sometimes for many months).
>b12 deficiency often causes other absorption problems - main culprits are folate, iron and vitamin D - symptoms of these similar to symptoms of B12 deficiency. Worth checking (is the RBC folate result quoted above within the reference range (note, if over the reference range , can given unpleasant symptoms remarkable like those of B12 deficiency - sorry, don't have time to look up reference range.
>have other causes for your symptoms and continued ill-health been ruled out (problems with thyroid often go hand in hand with B12 deficiency and the symptoms are very similar). Diabetes? Autoimmune conditions in the family - auto-antibody screen?
You say that you have regressed in many areas but not clear what your symptoms are. In the UK if symptoms continue unabated or get worse, then onward referral to a specialist is recommended (gastroenterology for gastric symptoms, neurology for neurogical symptoms, haematology for abnormal results in blood work, endocrinology for thyroid dysfunction...and so on (get the picture 😉).
The easiest way to understand if B12 is the problem is for your doctor to increase the frequency of your injections and see if this helps - if symptoms are improved, then that's the answer. Common sense approach but one that many doctors here in the UK do not take - many of us here have trouble getting injections at sufficient frequency to keep us well. Also worth noting that people recover at different rates and this can take some time - especially if the deficiency has been present for some time. Some tend to feel worse once they start treatment (the repair effect), though in your case I suspect that after nine months and with things still regressing, then this is probably not what's happening to you.
If you read the all the information contained in the links in the third and fourth PAS pinned posts, there's lots of information about pernicious anaema and B12 deficiency that will help you to understand more about B12 deficiency and pernicious anaemia (PA is only one cause of B12 deficiency but the treatment is the same). Treatment guidelines in the UK may differ but the principles are still the same. So, might help you with your doctor.
Sorry that there aren’t any easy answers and hope you find a solution soon.
Hi Foggyme. And thank you for the detailed reply. A couple of points:
- Reference range for MMA is 0 - 378 nmol/l so results are indeed within range.
- The RBC Folate reference range just says >1200 nmol/l so I am more than double the low end of the reference range. No upper range is given.
- I have had a CBC and along with the B12 results it did indicate a insufficiency in Vitamin D. It was 56 nmol/l on a reference range of 75 - 200 nmol/l. I have been taking 1000 IU Vitamin D tablets x 2 along with 700 IU included in my multivitamin since April. I plan to go back to get retested soon. Unfortunately, doctors here don't seem to take vitamin D deficiency/insufficiency seriously. My doctor's exact words were "it's winter time in Canada - everyone is deficient to a certain extent."
- Many of my symptoms are neurological. I have had MRI's of both my Cervical & lumbar spine and brain which showed no abnormalities. I have had difficulty with nerve pain, especially in my lower extremities, tinnitus (in one ear only), vision issues, mood issues (which have improved), etc.
- A neurological exam in March did not show any abnormalities. A nerve conduction study and EMG were negative.
- Have not had any gastro symptoms and thyroid was checked in February. All clear.
- Getting extra shots from my clinic is not an option. My GP is convinced that what is going on is not B-12 related. Fortunately, my daughter has some medical training and would be able to inject me if I asked. I may go down that route to see if I have any improvement.
Hi elvistoronto1. So hmm...does sound like a good idea to try and increase the frequency of your B12 injections - may well help and can't do you any harm 😉.
As Galixie says above, B12 and injection equipment is available without prescription in Canada...so hurrah for that.
And yes, we have the same trouble with doctors here...not many understand B12 deficiency and how to treat it properly. And most are completely ignorant of the range of symptoms it can produce, including the neurogical havoc that it can wreak on the body.
Very best of luck and post again if you need any more help 👍
Sadly you right and God forbid a patient knows the subject better than doc or consultent you shown door quickly.No one thinks doctors should know everything but be nice if they would give us credence for what others do know
I hate to say it but your story sounds similar. I’m from Windsor, Ontario and I also constantly hear that my symptoms aren’t b12 related. Funny as most improved as soon as I started injections. 10 months later I’m still injecting 2-3 times per week. My physician wanted me to stop after only a month of injections. They truly don’t know what they’re talking about! That being said, I did notice a plateau and some symptoms return only to find out my iron was low and my vitamin D was only at 72. Once those started to come up I felt a lot better. Now it’s just fatigue I battle when it decides to sneak up on me out of nowhere. I also have to keep an eye on my potassium and phosphorus. I simply make sure to keep up on those through my diet. Good luck to you and don’t listen to the docs. Do what you need to do to feel your best!
Are you having your active b12 tested and not just the bog standard all b12 . I took solar sub lingual 7 over a month I managed to get mine up to 300. Avoided NHS injections. Might be worth a try. Have u been tested to make sure you don't have a issue with absorbing b12 from food.
Surely better to avoid having to have injections if you can. Im very sceptical about how much gp surgeries are tied to pharmaceutical companies. I asked for NHS active b12 test, was told no but they could recommend private facility in Harley Street, £125. I went online got it for £45. I was able to increase my levels with the solar sub lingual tabs and increased intake of b12 foods. I was ill for over a year due to low 12. I would advise anyone to look at their vitamin and mineral levels, any inbalance can be so detrimental. Again no tests available on nhs. I did hair analysis, no toxins but high calcium showed, was advised to increase my magnesium, this allows the calcium to get where it needs to be and not deposited in muscles etc. We all need to treat the whole body, we are all different and different levels/ranges affect us differently. The gut/brain school of medicine slowly emerging, research at uch London, hopefully this will help a lot of people with health issues.
Buckone. Many members who belong to this community suffer from absorption issues, B12 deficiency and pernicious anaemia...all of which rarely respond to oral B12 supplements. For these people, the only effective treatment is B12 injections.
Those with absorption problems who cannot access treatment with injections are exposed to the risk of potentially irreversible neurological damage (subacute degeneration of the spinal cord - the only cause of which is B12 deficiency). Many people in this forum have real difficulties accessing appropriate treatment with injections.
There is absolutely no financial advantage to pharmaceutical companies or GP's to offer B12 injections and avoiding them, as you suggest, is potentially dangerous and not an option for those with B12 deficiency due to various absorption issues (on such being Pernicious Anaemia).
In fact, the cynic in me thinks that if financial benefit (or achievement of targets) were at play, then many here who need treatment would find it much easier to access!
It's also worth noting that once any B12 supplements have been taken (oral or injectable), serum B12 levels (or active B12 levels) are irrelevant...symptom relief is the only way to tell if and when treatment is sufficient and effective.
It's likely that if you were able to treat yourself effectively with oral tablets, then you do not have an absorption problem...not something that most people here can lay claim too.
It's also worth noting that although the active B12 test is more accurate than the serum B12 test (for reason I don't have time to discuss), it can still only show how much B12 is in the blood...and therefore cannot given any information about whether or not B12 is being appropriately processed at a cell level. And B12 deficiency can still be present even if these test results are within 'normal' limits.
MMA and homocysteine tests show (in different ways) if B12 is being processed properly at a cell level - so much better tests in assessing the presence of B12 deficiency than either serum B12 or active B12. However, these tests can also be skewed if any form of B12 supplements have been taken...and raised results can also be the result of other underlying medical conditions.
So, the bottom line is that there are no single gold standard tests with which to diagnose B12 deficiency or Pernicious Anaemia. Doctors should always take into account the full clinical picture and that means looking at symptoms (not just blood tests). Most rarely do that. Unfortunately. And to the potentially life threatening detriment of many who inhabit this forum.
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