[nornirn]

Hi,

I will post more later, but my wife has had extreme sciatica with no compression or identifiable cause (except trauma) for about 5 mos. now. She is 30. She was also just diagnosed with small fiber neuropathy, but she never had any neuropathic issues before she fell in April. One thing I notice is that her B12 levels are EXTREMELY low (she has had so much bloodwork done in the past few months). I wonder if it's affecting her ability to heal. Her docs say that everything is "normal" -- including her thyroid hormone levels, but I also think there's something up there.

Her B12 serum result is 254 (normal values 180-914 pg/mL at this lab).
How much methylcobalamin should she start to take per day? We are afraid to put her on a B complex because of the small fiber (her B6 levels were non-toxic but the neurologist said B6 was fine and he didn't think she should be on a B-complex supplement). She is currently taking benfotiamine as a result of my readings on these boards.

Thanks so much.

[Patrick Winter]

Originally Posted by nornirn

Hi,

I will post more later, but my wife has had extreme sciatica with no compression or identifiable cause (except trauma) for about 5 mos. now. She is 30. She was also just diagnosed with small fiber neuropathy, but she never had any neuropathic issues before she fell in April. One thing I notice is that her B12 levels are EXTREMELY low (she has had so much bloodwork done in the past few months). I wonder if it's affecting her ability to heal. Her docs say that everything is "normal" -- including her thyroid hormone levels, but I also think there's something up there.

Her B12 serum result is 254 (normal values 180-914 pg/mL at this lab).
How much methylcobalamin should she start to take per day? We are afraid to put her on a B complex because of the small fiber (her B6 levels were non-toxic but the neurologist said B6 was fine and he didn't think she should be on a B-complex supplement). She is currently taking benfotiamine as a result of my readings on these boards.

Thanks so much.

A sublingual (under the tongue) Methyl B-12 of 1000mcg a day is a great start. Take in the morning on an empty stomach. B12 even in high doses is not something that has very many bad side effects if any at all. Don't let a doctor ever worry her if her B12 levels come back high at her next blood draw either. B12 is really one of the best supplements out there. Check the research on it. It literally is maybe the most important vitamin we can get in our bodies. With small fiber the only B vitamin that is iffy is B-6. High doses can supposedly trigger neuropathy symptoms. Even B6 in lower doses is safe though. Benfotiamine and B12 are great choices. benfotiamine will help detoxify.

[bluesfan]

Just to add to Patrick's reply - if you take a break of at least 3 days (preferably a week) from B12, before having a test done, you'll get a more accurate result on the test. (ie: not a false high result). Don't eat or drink anything for an hour after taking. Also I chew the sub-lingual - still works - and doesn't irritate my mouth. Don't expect a large jump in test levels - the number will increase slowly.

[Starburst]

I'm glad I found this thread. I shall sit down later and have a proper read.

A blood test a few months ago found that I was anaemic, so they checked my vitamin B12 and iron. I was very deficient in iron, have been put on supplements and my haemoglobin is back in the normal range. Addressing the vitamin B12 has been a fight as no one seems to think it's an issue, especially now I am no longer anaemic. Since late 2014, I've had tingling and numbness in my hands and feet. I've been told I have carpal tunnel and tarsal tunnel, as a result of having rheumatoid arthritis. I disagree and think the vitamin B12 is the cause. My level was 174 and lowest end of normal range for my doctor's lab is 190. I went back 4 times to discuss it and they finally acquiesced and prescribed vit B12 tablets. However, I feel I would benefit more from the injections. I have gastroparesis and have difficulty absorbing medication. My gastro has advised that I take all meds in liquid or injection form. Still, my normal doctor refuse to believe that the vitamin B12 is the cause of my nerve problems.

I'm in the UK and cannot find anywhere locally that I can pay for them privately.

[bjs1228]

This thread has so much useful information. I have posted twice under different categories about my medical issues, but I'm hoping Mrs. D or someone will see this here. My B-12 level is 373. Since February I have experienced numbness and tingling. It started in feet and hands but has progressed to other areas. It is constant and unrelenting. I have no other symptoms. I had a normal nerve conduction test in my legs. I have an MRI of my brain on Monday as my doctor is suspecting MS? She completely dismissed my B-12 level as normal. I have read enough to know that it is on the low end so I have begun to supplement. A friend of mine is a compounding pharmacist and she really thinks my symptoms may be from the B-12 levels. I guess I just wonder if anyone agrees with her? Holding out some hope that it may be the case. I suppose I will have more answers after the MRI. Thanks for listening.

[mrsD]

Taking 1000mcg (1mg) methylcobalamin orally on an empty stomach is not dangerous or like prescribing drugs.

The new acceptable low is 400pg/ml. Since methylcobalamin is OTC you can do this yourself and it is not even expensive at pennies a day.

Many doctors remain clueless about this subject.

https://www.youtube.com/watch?v=BvEizypoyO0

and
this link is for doctors continuing education, and was put up in 2003
http://www.aafp.org/afp/2003/0301/p979.html
Print it out and give it to your doctor.

[bjs1228]

Thank you for those links. I will read today. One more question, what is the consensus on the effect of oral contraceptives on B-12? I have been on the pill for the better part of 20 years. I really want to get my B-12 level up and hope the pill won't interfere with supplementing. If so, I will just come off of it! Thank you so much for any info on this. I have read conflicting information.

[February]

My levels were in the 300's. I suspected pernicious anemia and was taking b12. My levels went up but my symptoms did not improve until I started the methyl b12 on an empty stomach. What is noteworthy is that I had the Babinski reflex indicating cns involvement for at least 2 years. On the following neuro exam, after 2 months of methyl b12, I did not have the Babinski reflex. The doctors were totally baffled. I however, because of neurotalk, was not. Immediately, I brought methl b12 for my cousin, who was diagnosed with a very rare progressive only ms, but after 10 years, his Babinski sign is here to stay.

If someone has the MTHFR gene, will b12 shots even work?

[mrsD]

The reference book I use to look up drug depletions, does list combo birth control pills (both estrogen+ progestin) as depleting B12. It lists all the B-complex too as affected. So a B-Right complex by Jarrow, may be needed too.

So you will have to supplement well, and then get retested in 3 t 6
months. Stop the supplement for at least a week, before retesting.

Your level is not dramatically low, but it is low enough to pay attention to. 400pg/ml is the new low, but the labs have not changed the ranges still after 10 yrs.... and lows of 200 are still considered by doctors as "normal" because a red flag doesn't come up at those low levels.

Some websites exist now on this topic, B12 deficiency and drugs:
https://womensinternational.com/conn...itaminb12.html

[rec60661]

I was diagnosed last week with PN based on symptoms and a nerve test. It has come on suddenly although I have had slight numbness in my feet for over ten years. I think the combination of a daily dose of Protonix and Metformin* caused a b12 deficiency ... and now with what I've read here ... I'm pretty sure that's the cause. I'm not diabetic and I WAS very fit, so I'm hoping that I can restore my B12 levels and stop the progression of nerve damage.

Of course, 3 out of 3 doctors agree that my "normal" B12 serum level precludes a B12 deficiency as the cause of my symptoms. They also all agree that there's nothing they can do.

BUT ... armed with the information that each of you so generously shared ... I'm going to the 24-hour Walgreens to buy a bottle of Methyl B12 (and will take on an empty stomach!).

Any advice on B12 brands or issues I need to know will be gratefully appreciated! Also - are shots better? My situation is pretty bad ... significant impaired gait, twitching and jumping muscles in legs and arms and feet are totally "gone".