Vitamin B12 deficiency questions

[RAE]

DW has recently been diagnosed with a Vitamin B12 deficiency. It has taken us (and a couple of different docs) some time to reach this conclusion, as other things had to be ruled out first. Her serum B12 is actually in the 300's, which is low but not way below the reference range (at least the USA reference range........the ref. range in Japan and most of Europe starts at 500, from what I am reading). Anyway, the first doc she saw refused to even consider B12 deficiency as a possible cause for all her strange symptoms (which are many), but the second doc we went to realized right away that it could be the problem. The second doc has now started her on the B12 shots.........one 1000mcg injection weekly for 8 weeks, then monthly injections after that. Her symptoms include things such as dizziness, balance issues, confusion/short term memory loss, tingling/numbness in the hands and feet........all of which are pretty common for B12 deficiency, from my research (and not very pleasant for her, to say the least). She seems to be improving very slowly (she's only had the first injection so far).

Has anyone else been diagnosed with this, and if so, what was your experience? Did the injections work, and if so, how long (how many shots) did it take before most of the symptoms were resolved? If you took the sublingual B12 lozenges (either instead of the injections, or to supplement the injections), were they effective for you? Do you find that you need to supplement with B12 (either with injections and/or the lozenges) over the long-term to prevent symptoms from recurring? The second doc who started her on the injections seems to think it could be several weeks before she sees significant improvement, but I'm hoping (as she is) that it will not take that long. Any experience and/or advice others have with this condition would be appreciated............

 

[rodi]

Our family (both DH and I separately) have a genetic mutation that makes b12 and b9 hard to break down properly because the Methylenetetrahydrofolate reductase enzyme is generated incorrectly. Unfortunately, one of our sons ended up with both our (different) mutations and has very inadequate breakdown of folate and b12. The family of mutations is called MTHFR - named after the enzyme in question.

Our solution is to take bio-available forms of the b9 and b12... cobalamin in the case of b12, and methylfolate in the case of b9. We get the cobalamin form of b12 at costco (look for the term "bio available"). And the methyl folate through amazon.com.

I would definitely consider whether the shots are in the bio-available form. If your wife has a form of the MTHFR mutation *and* the b12 supplementation is not the cobalamin form... the supplements won't do much...

We used 23 and Me to confirm the mutations. DH and I had already had ourselves tested and saw we both had minor forms of the mutation. Older son has the same form of the mutation as me, and younger son has both mutations (DH's and mine).

https://ghr.nlm.nih.gov/gene/MTHFR
Warning Signs of a B12 Deficiency

 

[RetiredGypsy]

I had a B12 deficiency. The doc gave me a script for vitamin B12 1000mcg, folic acid, and a complex B vitamin. Never got to the point where I needed the shots, but the last set of bloodwork seemed to suggest the vitamins are working just fine. Upping my meat intake a bit might have helped some too.

 

[razztazz]

Not B-12 specifically but doctors being oblivious to the bloomin' obvious, many times

Very timely post as I am dealing with a similar situation and have narrowed it down to a possible B-12 shortage. Anyone who watches their cholesterol and eats little to no animal parts is setting up for an eventual B-12 shortage. It is really old news but like doing 500 pushups per day I didn't think it would have negative consequences for me. I am also looking forward to replies

About 13 yrs ago I was seeing a new doctor out of desperation for a multitude of life threatening symptoms that previous doctors shrugged their shoulders at. I mentioned to him that I hoped he didn't think I was a hypochondriac. He said: "You know what a psychosomatic illness is?" A psychosomatic illness is a disease that mostly just affects doctors."

 

[audreyh1]

I think that under 400 is a problem, but the ranges given by tests think that's normal.

My doc targets Vitamin B12 800 to 1000 pg/ml and has folks take supplements until it gets into that range.

 

[RAE]

I think that under 400 is a problem, but the ranges given by tests think that's normal.

My doc targets Vitamin B12 800 to 1000 pg/ml and has folks take supplements until it gets into that range.

Interesting, thanks for your comments, Audrey. I have also been reading that it's not uncommon for some folks to begin showing B12 deficiency symptoms way before they are below 200 (which is the low end of the USA reference range). I think my wife is clearly in that category. Many docs in Europe and Japan apparently will start B12 treatment if you are under 500 or so, especially if you are also showing pretty clear B12 deficiency symptoms.

 

[RAE]

Very timely post as I am dealing with a similar situation and have narrowed it down to a possible B-12 shortage. Anyone who watches their cholesterol and eats little to no animal parts is setting up for an eventual B-12 shortage. It is really old news but like doing 500 pushups per day I didn't think it would have negative consequences for me. I am also looking forward to replies

The odd thing in my wife's case is that both she and I eat a fair amount of red meat, and have eaten that way for a long time (we eat the same foods, although I do consume more calories, and probably a bit more red meat as well). My last B12 blood serum was around 740, so my levels are pretty good, while hers are quite low. So there is something else causing her levels to be low. It could be an absorption issue in the gut, from what I read (and from what the second doc says). If you have impaired intrinsic factor in the gut (from any number of causes), it can prevent B12 from being absorbed into the bloodstream, regardless of diet. If that's the case, she may need to continue supplementing with B12 for life, but I guess that's okay, especially if she can take the sublingual lozenges rather than the monthly injections. We'll discuss that more with the doc once we get through this initial stage of getting her levels back to where the symptoms are gone, or at least mostly gone.

 

[respond2u]

When I went on a mostly vegetarian diet I started drinking a Powerade zero to help with B12. A lot of cereals and bread add it too.

On the pills, I think I read somewhere that absorption is dicey--that only so many mg get absorbed per pill regardless of the actual dosage. That's why I went with the drink over the pill.

Finally, did they check for glucose levels as well?

 

[Ian S]

Long term use of PPI's like Nexium may also reduce B12 levels.

 

[Moemg]

I was diagnosed with low B12. The only symptom I had was feeling sluggish . It showed up on a blood test . I took the shots weekly and I now take them monthly . I give myself the shots.It took me a few weeks to feel the effects .Follow up blood test showed my levels are coming up.My physician said that at low levels you need the shot because of the absorption problems.The reason I give myself the shots is because otherwise I would have an 8 am appointment which is too early for this retiree and I am an RN.

 

[mpeirce]

Long term use of PPI's like Nexium may also reduce B12 levels.

Lack of stomach acid can slow down absorption of B12, which is why PPIs can lead to lower levels of B12.

Getting B12 injections works around this problem. Sublingual B12 tablets can work around this as well (they are cheaper too).

Another thing, B12 comes in a few variations (like some other vitamins).

Cyanocobalamin is commonly found in multivitamins. Its cheap to synthesize.

Methylcobalamin is apparently more bioavailable, but more expensive.

You can get sublingual B12 tablets containing methylcobalamin at Costco (and pretty much any other drug store if you look for, do read the label).

Finally, vegetarians need to supplement or eat foods fortified with B12 since B12 only comes naturally from animal foods.

 

[eytonxav]

DD suffered from an undiagnosed B12 deficiency as an older teen. Her PCP actually refused to even test her B12 levels despite my daughter indicating she felt that is exactly what she was suffering from. Eventually, we went to another Dr and discovered that her levels were indeed very low. B12 deficiencies can cause some very debilitating symptoms, so its important to maintain a healthy level. She took shots for several years and now supplements sublingually. Like many other blood test results, simply being in range is not necessarily a good thing.

In my daughters case she has absorption issues in her digestive tract, and other vitamins/minerals are also effected. We have not been able to determine what the underlying cause is even after years of testing of her gastro tract. Very likely could be attributed to some genetic defects with at least two that were identified thru comprehensive genetic testing (not 23 and Me).

 

[RAE]

Finally, did they check for glucose levels as well?

Yes, her blood glucose was checked, and it's normal.

As an update, she's feeling much better after just one B12 shot, and 3-4 days of the sublingual lozenges. The sublinguals she is taking are methylcobalmin, but I believe the injection was cyanocobalmin. I don't think the injections come in any other form than cyanocobalmin (does anyone know?).

 

[rodi]

In my daughters case she has absorption issues in her digestive tract, and other vitamins/minerals are also effected. We have not been able to determine what the underlying cause is even after years of testing of her gastro tract. Very likely could be attributed to some genetic defects with at least two that were identified thru comprehensive genetic testing (not 23 and Me).

Have you looked at the MTHFR genetic mutations?

 

[bjorn2bwild]

As an update, she's feeling much better after just one B12 shot, and 3-4 days of the sublingual lozenges. The sublinguals she is taking are methylcobalmin, but I believe the injection was cyanocobalmin. I don't think the injections come in any other form than cyanocobalmin (does anyone know?).

I don't know, but this is what Cochrane review says about oral vs intramuscular injections -

Authors' conclusions:
The evidence derived from these limited studies suggests that 2000 mcg doses of oral vitamin B12 daily and 1000 mcg doses initially daily and thereafter weekly and then monthly may be as effective as intramuscular administration in obtaining short term haematological and neurological responses in vitamin B12 deficient patients.

Oral vitamin B12 versus intramuscular vitamin B12 for vitamin B12 deficiency | Cochrane

 

[eytonxav]

Have you looked at the MTHFR genetic mutations?

I believe so, the genetic test DD had was full genetic testing from a company called GeneDX. It was very expensive, but fortunately our insurance covered most of the cost. I'll have to ask my DD about what it showed, but I believe there were two specific genes effected. She also has the folate deficiency.

 

[rodi]

I believe so, the genetic test DD had was full genetic testing from a company called GeneDX. It was very expensive, but fortunately our insurance covered most of the cost. I'll have to ask my DD about what it showed, but I believe there were two specific genes effected. She also has the folate deficiency.

The two gene markers are the rs1801131 (aka MTHFR A1298c) and rs1801133 (aka MTHFR C677t).

We've had great improvement with taking OTC methylized forms of B9 and B12.

 

[Sarah S]

Methylcobalamin injections can be obtained but you will have to get them from a compounding pharmacy. Insurance may or may not cover that form