Normal B12 levels?

[ReallyWondering]

63 yo female. Symptoms have been over a year of tingling/light pins and needles in feet, exhaustion, and memory issues, now lately ringing in ears, diagnosed with low B12 (63). Currently on weekly shots of Cyanocobalamin 1000 mcg/ml. After 6 weeks my B12 is at 537. What should it be? Also had a homocysteine test which came back at 8.3. So appears to be normal? How do I know if once a week is enough? I also am suffering from daily heartburn and acid reflux. Been on a regimen of PPIs for two months with no relief. Been weaning off (half-dose) for a week and now stopping. Not clear if this is related to B12 malabsorption.

[charks]

63 is very low. I'm surprised you were still able to function so well. My levels were higher and I couldn't stand up without help.

You should have had 6 loading injections i.e every other day not weekly to start off your treatment and then weekly until your your symptoms got much better. Your B12 level is still very low. Most of us find that we need levels over 2000.

I had really bad reflux and heartburn and it disappeared within days of taking B12. Although I also cut out gluten and dairy so I'm not sure it was just the B12 that helped.

[ReallyWondering in reply to charks]

6 shots of Cyanocobalamin 1000 mcg/ml every other day? I'm now giving them to myself, so I can do this. No harm/issue with this? Like mostly everyone else on this site, my GP does not seem to understand B12 deficiencies well.

[charks in reply to ReallyWondering]

If you want to get well quickly you need lots of B12. Some people on this forum find they need to inject three times a day. As you are self injecting you have the benefit of being able to experiment and find out the best dose for you. It won't harm you, B12 isn't toxic.

[Nackapan in reply to ReallyWondering]

Usually 1mg /ml every other day with neurological symptoms until no more improvements.If weekly and symptoms improving just continue that regime.

What you need is time.

There is no quick fix.

Your body has been deplete for a long time

I found a symptom chart helpful.

Then find your maintenence dose.

What measurement was used for your b12 test.

Always useful to state and range in brackets on the right .

Was it s serum b12 test ?

Was your folate level okay ?

Iron

Vit D ?

I hope you get improvements soon.

Something acidic towards the end of s meal will help you . Lemon or cider vinegar

Little and often food.

No food 3-4 hours before bed may help .

[ReallyWondering in reply to Nackapan]

What do you mean by what measurement? I just see a B12 test on my lab results. Everything else is normal. Just got my INTRINSIC FACTOR ANTIBODY and it's positive. I thought the acidic stuff was bad for the reflux?

[Nackapan in reply to ReallyWondering]

Labs use different measurements. My result was for serum b12 .

106 pg/mL(200-914.0)

Measurement used and test result

In brackets in range number

Low stomach acid hax the same symptoms as high.

Most of us have low stomach acid hence acidic drinks help at the end of z meal to digest.

Do get s print off of your positive pA result fir your records

[Mixteca in reply to ReallyWondering]

'Normal' doesn't really mean very much. What's normal/healthy for one won't apply to all. Best post your other test results for us to review. Reflux may be due to low stomach acid, not necessarily high, which is a cause of malabsorption of vitamins and minerals. Raw organic apple cider vinegar or lime juice, taken diluted before meals, should help. The PPIs will deplete your B12 and possibly folate too.

[ReallyWondering in reply to Mixteca]

Which test results are you referring to?

[Mixteca in reply to ReallyWondering]

You said "everything else is normal", so I'm talking about whatever blood tests you were referring to.

[ReallyWondering in reply to Mixteca]

Intrinsic Factor Antibody: Positive

Hemocysteine: 8.3 (normal 4-12)

Methylmalonic Acid: .10 (normal 0-4)

Folate: 44.6 (high, last month 33.4, normal is 5.9-24.8)

Vitamin B12: 537 (390 last month, 63 two months ago)

These are all two months ago:

White blood cells: 3.7 (on the low side, normal 4.0-11.0)

250H Vitamin D total: 55 (normal 25-80)

Glucose: 112 (high, normal range 70-99)

I have a bunch of other blood tests from my oncologist (past history of breast cancer). May not be relevant. All fall within normal range.

[Mixteca in reply to ReallyWondering]

It helps if you post ranges for all blood tests, especially as you're in the US as they're different to the UK, I think.

Your initial B12 level was very low and it should rise quickly once injections start. At least that's what happens after loading doses of hydroxo, no idea about cyano and less frequent than EOD injections.

Vit D is too low, so you need to supplement that.

Was ferritin checked too? You need good iron stores for B12 to work effectively.

[ReallyWondering in reply to Mixteca]

Updated. Ferritin was not checked. I’ll ask for that next time I go in. It’s in the normal range. I already take a multivitamin. I what do you think the vitamin D should be?

[Mixteca in reply to ReallyWondering]

I'd start with 4000 iu daily to get levels up, that's what I did, though others do take higher amounts initially.

[ReallyWondering in reply to Nackapan]

Are you're saying I should be taking 1 ml rather than 1000 ml? That would be very difficult to measure.

[Nackapan in reply to ReallyWondering]

The usual b12 injection dose is ;1mg/1mL

[am111]

Standard treatment with cyanocobalamin is to give once-a-day injection for a week and then weekly for a month, but after 6 injections, your B12 store levels should be fine now and weekly injections will give you as much relief as more aggressive treatment, so you can continue weekly injections till full recovery and then go to monthly or 3-weekly injections for maintenance based on how you feel.

Your homosysteine being low in the range means the active B12 is now close to as high as it can be. You may do a MMA test to be sure, as MMA is the most specific to B12 deficiency while homocysteine is affected by both B12 and B9(folate) levels.

My experience is that it takes as much time to heal fully as the time for which we were deficient. Thus, it may take you up to a year to heal fully, even when your B12 levels are maintained at a high level. The body gets damaged a lot by B12 deficiency and I have had all the symptoms that you describe. Will slowly get better and if they are getting better for you, then you just need to be patient.

[Nackapan in reply to am111]

Different countries ,different forms of B12 ,different loading doses .I wonder how they were worked out?

Just to 😕 confuse us even further!

[am111 in reply to Nackapan]

yes, lot of confusing stuff about schedules and types and their efficacies. I think a thorough study needs to be done on these. Often, serum B12 is what is measured but is awfully misleading. Active B12, homocysteine and MMA need to be measured. Also, on supplementation, these may fluctuate a lot, especially during the initial time period after a heavy injection (It is well-known that serum B13 fluctuates a lot, so these will also probably fluctuate, although MMA and homosysteine in the blood seem to be more of an average over some period, perhaps a week or so). Unfortunately, people think that the B12 mystery is solved, so there is no further research on it, but it is my belief that a lot of other diseases, especially neurological ones, are probably caused by or exacerbated by low B12 and that some B12 supplementation should be given to all, especially after a certain age. What that supplementation schedule should be is again unknown.

[Hockey_player]

Elevating the head of your bed and/or a wedge pillow might help with some of the reflux. I would keep injecting every other day until you have recovered.

[ReallyWondering]

Just got back my INTRINSIC FACTOR ANTIBODY and it's positive. So I guess I have pernicious anemia? Does this mean B12 shots for life?

[BethCam in reply to ReallyWondering]

The tests are not absolute and have false positives. When combined they show the likelihood.

Actually responding though to point out that since we are in the US standard treatment is different than in the UK (the home of this board) and varies by doctor/practice. Once a week for six seeks to start then once a month (assuming proper bloodwork improvement is seen) is what I have most seen. I am on every two weeks which gets questioned at minute clinic and other places since it is not the norm.

[BethCam in reply to BethCam]

Also from reading these boards along with my own experience, it seems our doctors are more willing to help you work out a schedule that works for you since we don’t have a strict guideline.

[Nackapan in reply to ReallyWondering]

Yes

[Nackapan in reply to ReallyWondering]

Yes you have PA.

Injections for life are needed.

It's finding the frequency that is right for you