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Could I have a B12 deficiency or something similar?

Messages
2
Hi all,

I am new here and am posting because I just haven't been feeling myself for the last couple of years.

I am male, 37 years of age in the UK. I don't smoke and drink moderately.

I had my B12 levels tested back in October 2011 and it was 405, which was within the normal range (quoted as 260-911) and a comment added saying "Cobalamin deficiency unlikely". I accepted this at the time, but believe myself to be symptomatic of B12 deficiency, or something else that produces similar symptoms (MS?). (fyi, Haemoglobin was 147 (130-180 range) and ferretin was 113 (22-322 range)).
The symptoms I have include:
Cracks on both sides of my mouth for about 2 years now, sometimes one side, sometimes the other, sometimes both (prescribed an antifungal/steroid cream which helps, but when I stop using it, the sores return).
Mouth ulcers - seem to have had a mouth ulcer in my mouth for the last year or so. used to get the odd one, now one goes away and within a day or two I have another.
Eye twitching - my left lower eyelid in particular seems to twitch a lot, it is very irritating.
Strange feeling of shaking/tremor internally - although I don't really appear to be actually shaking when I hold out my hand.
Tightness in chest, possibly due to reflux, indigestion? On and off, currently not realy feeling this symptom, but have on and off over the last two years.

Bascially I just don't feel myself. I started noticing things during a fairly stressful time toward the end of 2009 and through 2010 (was in process of losing my job and had a very young baby all at the same time as having a house extension built which was very disruptive). The stressful situation has gone away now really but I wonder if the stress back then could have triggered something?

Whilst any one of the symptoms above on its own might not really concern me too much, it is the combination of all of them that has me concerned. What do people think? Given these symptoms, could my apparently normal B12 level of 405 be deceptive and the symptoms I am experiencing be attributable to B12? I believe my diet to be pretty good, usually succeeding in eating my 5 a day, for the last few months anyway.

Another point of note is that my sister has Crohn's disease (I am pretty sure I don't have this given what I saw her go through) and possibly Pernicious Anaemia (they don't know if low B12 is due to PA or a symptom of the Crohn's flare up she had - anyhow, she has B12 shots 3 monthly at present).

Any thoughts etc really would be gratefully received as sometimes I think I am going mad!

Many thanks,
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi all,

I am new here and am posting because I just haven't been feeling myself for the last couple of years.

I am male, 37 years of age in the UK. I don't smoke and drink moderately.

I had my B12 levels tested back in October 2011 and it was 405, which was within the normal range (quoted as 260-911) and a comment added saying "Cobalamin deficiency unlikely". I accepted this at the time, but believe myself to be symptomatic of B12 deficiency, or something else that produces similar symptoms (MS?). (fyi, Haemoglobin was 147 (130-180 range) and ferretin was 113 (22-322 range)).
The symptoms I have include:
Cracks on both sides of my mouth for about 2 years now, sometimes one side, sometimes the other, sometimes both (prescribed an antifungal/steroid cream which helps, but when I stop using it, the sores return).
Mouth ulcers - seem to have had a mouth ulcer in my mouth for the last year or so. used to get the odd one, now one goes away and within a day or two I have another.
Eye twitching - my left lower eyelid in particular seems to twitch a lot, it is very irritating.
Strange feeling of shaking/tremor internally - although I don't really appear to be actually shaking when I hold out my hand.
Tightness in chest, possibly due to reflux, indigestion? On and off, currently not realy feeling this symptom, but have on and off over the last two years.

Bascially I just don't feel myself. I started noticing things during a fairly stressful time toward the end of 2009 and through 2010 (was in process of losing my job and had a very young baby all at the same time as having a house extension built which was very disruptive). The stressful situation has gone away now really but I wonder if the stress back then could have triggered something?

Whilst any one of the symptoms above on its own might not really concern me too much, it is the combination of all of them that has me concerned. What do people think? Given these symptoms, could my apparently normal B12 level of 405 be deceptive and the symptoms I am experiencing be attributable to B12? I believe my diet to be pretty good, usually succeeding in eating my 5 a day, for the last few months anyway.

Another point of note is that my sister has Crohn's disease (I am pretty sure I don't have this given what I saw her go through) and possibly Pernicious Anaemia (they don't know if low B12 is due to PA or a symptom of the Crohn's flare up she had - anyhow, she has B12 shots 3 monthly at present).

Any thoughts etc really would be gratefully received as sometimes I think I am going mad!

Many thanks,

Just a couple of quick points: B12 tests are often deceptive as they measure total B12 and much of it may be inactive. Methylmalonic acid is probably a better test of active B12.

And second, cracks on the side of the mouth can indicate B2 deficiency--have you looked into that? Some can not break down ordinary riboflavin supplements. A "work-around" for this is Source Naturals co-enzymated, sublingual B2--it is already broken down.

Welcome to the forum! I'm sure many others will comment on your post.

Best wishes,
Sushi
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi drob;

I agree with Sushi; a serum B12 test can be deceptive.
Many people can have symptoms at any level, but especially below 500.
It's good you are catching this soon enough, before neurological damage occurs.
I believe either of the methylation protocols could alleviate the symptoms. I find that the B vitamins, with extra B12 and folate, have healed my angular cheilits, and ulcers. B12, whether in hydroxo or methylcobalmin form, helps tremors.

I've had eye twitching, I'm not sure if it's from low B12, low potassium, or both, so both may be needed.
Sometimes reflux may be caused from low stomach acid. B complex may be enough to improve that.

The protocol may also help your sister, because Crohn's patients have been found to be low in B12, folate, B's, and minerals.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It does sound like deficiency of one of the Bs.. as others said, those B tests arent reliable. I suggest to check out the methylation protocols at this site (Richs or Fredds Protocol) if just basic supplementation of the Bs dont help after a while.

As some have polymorphisms etc in which can cause one to have good blood levels but one still isnt getting it properly within the cells or converting the B to active forms they need so normal B supplements wont always fix people who have issues with Bs who may need the active forms of it. I myself have this kind of issue so need to take active B forms.

Also consider things like the following (thou you dont seem to have enough of its symptoms yet but with those ulcers do check out that thread) http://forums.phoenixrising.me/index.php?threads/could-it-be-behcets-disease.19902/#post-305145
 
Messages
2
Thanks for your replies, very useful information.

I am going to see my GP tomorrow and am going to ask them to test my blood again for serum B12 levels as well as folate and possibly other vitamins - e.g. D. I will also mention the Methylmalonic acid and homocysteine tests as well.

I will let you know how I get on.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
If it isnt showing up your issues the first time.. its doubtful it will now. Blood tests usually dont measure intercellular levels of things nor how much your brain cells or whatever are actually getting. Doing a trial of it (active forms) is usually the best way to find out if you have an issue with the Bs or not.

For folate.. ask for a full iron study to be done (not just the basic iron test normally done as many can still have iron issues but have that basic iron test looking fine eg you can have no iron stores happening as they could be being used..so actually be borderline anemiac but the blood level you have right at that moment may be showing up fine). So request a full iron study done. (I had issues missed in that area for over 10 years due to just the regular iron test rather then a full iron study being done, before I found out I actually had borderline anemia cause I had no iron stores at all to fall back on)

For the Ds.. see you can have both forms of D tested (as some of us have abnormal ratios of it etc). One type of D may be fine but the other may be extremely deficient (that is how things were with me).

Homeocysteine may be in normal range but still indicate issues which most doctors who arent specialists in certain areas, dont know enough to know at what level to do further follow up tests eg for MTHFR polymorphism should be done if one is in the upper range of normal as it often indicates it. I had a specialist who fortuantely knew my normal homeocysteine result actually was indicating an issue so he sent me for further tests which proved he was right and I had 2 copies of the MTHFR polymorphism gene which can cause issues (much higher risk of strokes etc. I gave birth to a deformed child due to this issue) without the right supplements for it (active forms of Bs).