B12 test

[Dvpk24]

After starting b12 injections how do we know if the B12 is reaching cellular level. Levels show up high but is there any test to find it is working other than reduction in symptoms?

[clivealive Forum Support]

Hi Dvpk24 are you in the U.K?

The new BCSH guidelines say: “Plasma tHcy and/or plasma MMA, depending on availability, may be considered as supplementary tests to determine biochemical cobamalin deficiency in the presence of clinical suspicion of deficiency but an indeterminate serum cobamalin level”.

southtees.nhs.uk/services/p...

Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Dvpk24 in reply to clivealive]

Thanks but i am in US. Dont know what tests to get done as my levels are high as i self inject occasionally once a week and some of my symptoms improved but i am noticing that my muscle wasting in legs and arms and jelly legs is not improving. My legs pain a lot all day and work infront of computer for long so i associated the initially pain with it but now i am confused. B12 test done in Feb 2018 after a week of 1st injection showed normal mma and B12 levels around 600 but a recent test showed levels above 2000. I self inject and in between injections i take supplements of high dose.

Are there any tests to know functional deficiency or if b12 is working or not.

[Foggyme Administrator in reply to Dvpk24]

Dvpk24. The normal MMA test following a week of B12 injections shows that B12 is being processed properly at a cell level - you do not have functional B12 deficiency.

Recovery from the effects of B12 deficiency can be quite slow, especially if you were deficient for some time before commencing treatment. The fact that some symptoms have improved is encouraging...it's just that some things take longer to repair that others...for instance the neurological effects of deficiency. It will also take time...and gentle but increasing amounts of exercise, to remedy muscle weakness and wastage. (Walking is great for this).

Sitting in front of a computer for long periods of time may not help. Be a good idea to try and get up and walk around for ten minutes every hour (doesn't sound much, but it helps).

Not sure what you mean by supplements of high dose - if B12 tablets or sublinguals, better to take your B12 via injections - at least in the early stages and especially if you have or had neurolgical symptoms (in the UK, B12 deficiency with neurological symptoms is always treated with injections - understand that this is not always the case in the USA). Absorption rate from injections is 100% - absorption rate from oral is 1%-3%. Oral supplements don't work for everyone - B12 dose from injections is guaranteed 100%.

If symptoms go away with injection, return before your next injection, then go again when you have another injection, you need more frequent jabs. The aim have injections at a frequency that keeps symtpoms at bay.

If you mean high dose supplements of vitamins and minerals - take care. In particular, high doses or over supplementing with vitamin B6 can cause irreversible neurolgical damage. Some multi-vitamins contain 300%+ of the RDA - way too much if your body doesn't need it.

Sorry - no specific tests to show if B12 injections are working. Symptom relief following therapeutic trial is the only way to tell.

Not sure if you've been investigate for or diagnosed with B12 deficiency?

If you are self-treating without medical investigation and you still,have symtpoms, it would be better to discuss this with a medical,practitioner since there are many conditions that have symptoms which are the same as B12 deficiency.

If you have proven B12 deficiency or PA and have neurolgical symptoms, in the UK it would be usual to refer to a neurologist to rule out other potential underlying causes. For ongoing gastric symptoms, referral to a gastroenterologist would be usual.

Finally, recovery from B12 deficiency (from whatever cause) is gradual for some people and can take some time (months or years, in some cases).

[Dvpk24 in reply to Foggyme]

Thanks for the reply. I take a 2500mcg methylcobalmin Sub lingual between my shots. I was diagnosed with B12 deficiency after having symptoms for few months before diagnosis. I was diagnosed at levels at below 140 in ER after several doctor visits which was initially put up as Anxiety and depression by doctors. Had Headaches, Migraine of one side, Visual symptoms, Hallucinations, anxiety, tinnitus, pins and needles sensation in leg, brain fog, memory loss, fatigue, leg weakness , GERD, Heaviness in head, tingling in face, Electrical shock like sensation on onside of head which are almost gone after b12 shots. I had a feeling of foot drop in left leg which improved and Right now my leg weakness and the last symptom i noticed before my injections Muscle loss in legs and arms is not improving. I had MRis of brain which was normal, MRI of Lumbar spine which showed a minimal disc bulge and doctor don't think that my sciatica is due to the disc bulge as it is not compressing any nerves. Had a MRI of cervical spine and showed some stenosis on left side and the doctor say it should not have caused my symptoms so going to see a neuro surgeon soon. Had stress test for tachardia and it improved with shots. except the muscle weakness and wasting.

When i was initially diagnosed with B12 def in the ER it was late in the night and they dint run other tests like MMA/HCY and was put on One monthly shot for 4 months and when i insisted because my situation was not improving another doctor ran the tests for IF/HCY/MMA/ Gastrin/H pylori and all came normal right after a week of injection. Trying to see if i should get a endoscopy done to rule out other stuff.

Felt happy when put on weekly shots but my levels showed up high so they stopped weekly shots and put me on monthly shots so i started SI. With this muscle wasting and weakness not improving i get worried if there is other thing that it is causing.

All my issues started just 6 months after N20 exposure for some dental procedures and i was a vegetarian for almost 30 years from birth. Now with SI my levels show above 2000+.

[Foggyme Administrator in reply to Dvpk24]

Yes...a tale we hear here all too often...symptoms of B12 deficiency misdignoased as a whole host of things...anxiety, depression, ME, CFS, MS, Dementia...to name but a few. Bad.

Many people (doctors included) are unaware of the neurological havoc that B12 deficiency can wreak in the human body.

All the symptoms you describe can be symtpoms of B12 deficiency but they can also be the symptoms of other things too, so good that you've had those ruled out with the MRI scans etc.

Stenosis of the cervical spine can be present without causing too many problems, so your doctor may we’ll be right that this is not responsible for your symptoms. I have herniated discs from C4-C7 which don't cause me to many problems - for now, at least (no nerve compression).

Not sure why you're consulting a neuro surgeon? Think I would only ever consider neurosurgery on the spine as a very last option (to many possible side-effects), especially if there is some doubt that it is responsible for your symptoms.

Have you talked to your doctors about the muscle weakness and wasting? This can be caused by B12 deficiency and will take longer than some of the other symtpoms to improve...especially if not very active and having a sedentary job. If you're really worried about it, you could ask to be referred for physiotherapist, or for further investigations to rule out other potential causes (if that has not already been done).

Good luck.

[Dvpk24 in reply to Foggyme]

I wanted to see a neuro surgeon because sometimes I have this crippling neck pain mostly while working and I feel like my spine and back are crumbling into pieces. Was wondering if it is related to my cervical problem. The Neurologist who did the MRI wanted me to check with the surgeon but said she don’t think that my symptoms were caused by the stenosis. There is no explanation of muscle wasting though as she was not sure if b12 would cause these symptoms. She is a Physician assistant btw.

[Foggyme Administrator in reply to Dvpk24]

Ah ha...yes, I get it now 😉.

Best of luck with the neuro surgeon and post again if you need more help with the PA / B12 deficiency.

[Sanders1]

Dvpk24....I am in the US as well and my naturopath ordered a micronutrients test from Spectracell Labs that showed my lymphocytes (white blood cells) were severely deficient in B12. She said this was the cellular level. My Labcorp serum B12 is always high and my folate, homocystein, and MMA are always normal but I have all symptoms of B12 deficiency. Might be worth it to do the Spectracell.

[Dvpk24 in reply to Sanders1]

Thanks for the reply. Could you please provide me any reference of the Naturopath. And what is your course of treatment.

[Sanders1 in reply to Dvpk24]

I'm in Seattle and I see two different naturopath's. They are covered by insurance here. My current treatment plan is injecting 1.5 mg of hydroxycobalamine every 3 days (I already did loading doses) I also take a supplement called B minus on injecting days and Stress B that has methylfolate on off days. I'm also taking iron and I drink coconut water for potassium.