Quote:
Originally Posted by Paul Golding
Hello theresej,
Please be very careful about self-diagnosis of B12 deficiency.
I understand that many members of this forum are probably here because they have not been able to get the help that they need from medical professionals. I cannot blame anyone for wanting to "do it yourself"; if you read About Me on my web site, you will understand why.
Until May this year, I was unable to find a doctor who either knew or cared about vitamin B12 deficiency (except for my psychiatrist). I am very fortunate to now have a doctor who is interested in nutritional and holistic medicine.
It would be best if you could find a local doctor who knows about nutritional disorders.
I am torn between wanting to give advice, and the need to be cautious; I am not medically qualified. I do have tertiary qualifications in applied science and engineering, with my main interest in scientific instrumentation. While I am competent to design scientific experiments and analyse the results, including my current series of tests, all that I know about B12 deficiency comes from two years of reading about it on the Internet.
Although I cannot offer medical advice, I can offer to share my research findings with anyone who is interested. This is partly why I have published my web site. The References page contains direct links to many articles; this is intended to be a resource for others to use.
Having said all that, I will respond to the specific issues that you raised:
1. You used the change in homocysteine to diagnose your B12 deficiency. There are potentially some serious problems with this:
- Homocysteine can be affected by either vitamin B12 or by folate. Just as it is possible to mask B12 deficiency by using folate supplements, it is possible to mask a folate deficiency by taking large doses of B12. Because of the complex chemical interaction between homocysteine, folate and B12, it is possible that the reduction in homocysteine level does not confirm a vitamin B12 deficiency.
- You should be very careful about relying on just two measurements. Homocysteine is susceptible to very significant variations between measurements. Even if you maintained a perfectly stable diet, lab errors can be a major problem. As reported on my web site, different labs reported huge differences for the same sample, and there were unexplained variations between consecutive samples from the one lab.
- Methylmalonic acid is a much more specific marker of vitamin B12 deficiency because it is not affected by folate levels. As you have commenced taking B12 supplements, there is no point in measuring MMA now.
I strongly suggest that you have your red-cell folate measured, if you have not already done so, otherwise you cannot draw any conclusion from your observation, and could be at risk of folate deficiency.
2. You did not give the units for your B12 level of 750. Some labs still report in pg/ml (ng/l) while others have changed to the SI unit of pmol/l. If your result was in pg/ml then you can convert it to pmol/l, as follows: - (Concentration in pg/mL) x (0.7378) = pmol/L
So, if your result was 750 pg/ml, it is equal to 553 pmol/l; any lab would report that result as normal. Although this does not exclude the possibility of vitamin B12 deficiency, your level is way above what is normally the "grey zone". I suggest that you read the article by Oh and Brown, which is reference G1 on my References page. In the same section, B12 Deficiency - Diagnosis, you will find several articles that are useful.
3. Until recently, methylcobalamin was not readily available here in Australia, so all my testing has been done with cyanocobalamin. There have been many comments on forums about how methylcobalamin has been found to be more effective. This is reported to be because the cyano form requires conversion to the methyl form in the body. There are links to several articles on oral treatment of B12 deficiency in the B12 Deficiency - Treatment section of my References page.
4. I am not sure what you mean by "the neurologically active form, methyl-B12". You appear to have made a connection between the form of oral dose and the neurological effect of a deficiency. I would expect the cyano form to correct a deficiency, regardless of the symptoms, although with less efficiency than the methyl form. Similarly, I would expect the methyl form to correct a deficiency that has only haematological symptoms.
5. I agree that most doctors do not have a clue.
I suggest that you do all of the following:
- If you have not done so already, check for the possibility of folate deficiency by having your red-cell folate measured.
- As you have already started., continue taking the B12 supplements unless you become certain that you do not have vitamin B12 deficiency.
- Search for a doctor who specialises in nutritional or holistic medicine.
- Read as much about B12 deficiency as you can, especially the findings of researchers, starting with reference G1 on my web site.
- Before accepting advice that you either do or do not have a B12 deficiency, ask “what is the evidence?”. Remember that is that there is currently no agreed “gold standard” test for vitamin B12 deficiency. You will have to make a decision based on the imperfect tests that are currently available.
Paul |
Hi Paul,
I very much appreciate your concern and your sense of caution.
I have a BSN, and in the last year, because of my "event" in June 06 and the diagnosis of unexplained stroke, have really delved into nutritional research to the point I am considering going back for my masters in clinical nutrition.
As you know, testing becomes expensive, especially when tests are outside the norm. I strongly suspect that red cell folate testing is not a usualy test paid for by insurance companies. My red blood cells themselves are fine. I show no signs of folate deficiency other than possibly my homocysteine level being elevated.
My research focused heavily on homocysteine in the summer of 06. I was amazed to find out how very involved an elevation of this amino acid is in soooo many health problems. Being part of the medical community myself, I was, to say the least, quite upset that routine testing for elevated homocysteine has not become the norm, and to learn that homocysteine, not cholesterol, is perhaps the best predictor of heart diease, attack and stroke. I was quite surprised to learn that most people with HD, HA or stroke do not have elevated cholesterols at all.
HD, HA and stroke have been based on the fat model, ie cholesterol, for almost 100 years. Several decades ago, a Harvard professor/researcher, discovered the link between proteins and HD, HA and stroke, ie homocysteine, and was summarily pushed out of his position at Harvard. However, he unleashed research world wide that is still ongoing. One of the world's foremost researchers in this area was in my area, but passed away a couple years ago.
I discovered that a supplement I had been taking of grape seek/skin extracts and herbs created by Dr Foltz, the discoverer of the beneificial affects of aspirin on HA, had been keeping the inflammatory, blood thickening, excessive clotting elevated homocysteine causes at bay. When I stopped taking it in January 06, all sorts of symptoms surfaced, including cognitive decline, psoriasis, very heavy, irregular menstrual bleeding/hemorrahging (when there had been no bleeding for the year I was one the supplementation), very thick blood (even the cardiologist I eventually saw commented on this) and more I can't remember right now, all worsening and leading to the "event" of june 06. I suspected the possiblity of stroke, though it was strange, and immediately resumed that supplementation. Some of those symptoms immediately responded - for instance, no more menstrual bleeding at all, the psoriasis gradually cleared, my thick blood which resulted in a finger stick eleciting no blood whatsoever reverseing each time I took a dose to blood that flowed freely.
But from the point of the "event", many neurological symptoms began to appear, some I had had for years, but never understood they were neurological, and they worsened, others were new.
As the year progressed, and I was suddenly thrown into a high sensory environment, and at least once amonth into such that was chaotic, I began to experience serioulsy debilitiating symtpoms for a few to several days aferwards.
My research led me to Multiple Scleriosis as a possible diagnosis, as I developed almost all of the symptoms that fit MS.
Because of my elevated homocyteine, we were looking for the cause. I had genetic testing done on the pathway that utilizes B12 and folic acid as co-enzymes . it was normal.
My B12 was normal - 600+ - 750 range.
My B6 is elevated - 40's to 50's range.
doctor wouldn't test the folate at that time due to the fact that people are rarely deficienty in folate. She just tested it the other day - awaiting results.
Since my B12 was well within normal, and the genetic test came back normal, nothing further was looked into regarding B12.
They didn't know what to do with my B6 level, and still don't, though now we are going to look at my P5P level as simlar high levels of B6 are found in autistic patients who also have low P5P, the functional form of B6. I need to find out the cost of this test as it has to be sent to Mayo to be done.
Now, regarding my "self diagnosis" - it is being done under the supervisiosn of my doctor.
I work closely with her and have taken on doing a lot of research into my issues and possible explanations and she is very supportive and responsive to what I share with her.
How I arrived at this diagnosis:
I came across some information regarding functional B12 deficiency and finger nails. Some claim that verticle ridges in the nails and loss of the moons indicates a B12 deficiency. I have both. There is no agreement on this, but I decided to run with it.
I started supplementing with mega doses of Sublingual methylcobalamin, 3,000mcg twice a day.
A week later my doctor drew my B12 and homocyteine levels, B12 was greater than 2000 and my homocysteine had dropped to within normal limits, the first time it had done so in almost a year and a half. Previously, supplementing with cyanocobalamin in the hundreds of mcg range only dropped the homocysteine by a point at which time it stablized and did not respond further. Supplementing with methylcobalamin sublingually dropped it 4 points almost overnight. There appears to be a strong, direct cause/effect link.
Additionally, my cognitive, energy, and mood symptoms gradually improved. Gradually over the period of the 1st month of this supplementation, some of my phsycial neurolgical symptoms have been improving. At the one month mark, I had a few days where I felt better than I have literally in many years.
The fact that at my cognitive, mood and energy levels have been steadily improving, and that some of my physical neurological symptoms, such as serious spacisity and weakness in my arms, are getting better, plus the fact that my homocysteine responded so quickly once one of it's important methyl donor was available in sufficient quantilty to allow it to be methylated back into methionine, thus decreasing its level in the blood, all points to a very evident functional deficiency in the neurologically active form of B12, methylcobalamin.
My dioctor agrees. When I said I self diagnosed, I mean I was the one to discover this.
I also self diagnosed the fact that since the "event" I developed postural HYPERtension, where your BP goes UP when you sit or stand up, is normal when you are laying down, which can have neurological causes according to my cardiologist. The doctors didn't catch that the hypertension I developed was postural hypertention, I did. (My medical bacground is partially in CCU/Cardiovascular Recovery/Heart surgery sop I wasn't satisfied with a simple "you've got hypertension" with no explanation, I wanted to find out why.)
Back to the methyl B12. By taking the methylcobalamin sublingually I avoid any potential gastro intestinal absorption issues.
Given that my labs have never shown any sign whatseover of anemia, which has been tested for, the chances that I have a folate problem are slim, but not outside the realm of possiblity. I am also taking from 800 - 1600 of folate a day with the methylcobalamin, which should be more than sufficiernt from what I understand.
It is best if I can find a doctor who knows about nutritional disorders. I have tried. My doctor has tried. We have not been very successful. She is trying again to find me such a doctor.
I have been reading a great deal about B12 deficiency. I believe it is a very serious issue that is going largely undiagnosed in perhaps millions of people.
I believe a very simple place to start in such diagnosis are these lab tests:
B12
Homocysteine
MMA (Methylmalonic Acid).
While homocysteine is not exclusively driven by B12, its elevation should raise serious red flags about B12 status even if the B12 is high normal. Then B6 and Folate should also be looked at.
Of course, MMA is very specific to B12 and its elevation indicates a deficiency in B12 even if serum levels are very normal, and if they are in the upper half of normal, an elevated MMA would indicate a functional deficiency of B12. It won't tell you the cause, but it is highly diagnostic.
My MMA level had not been checked during all this, so I have no idea what it was before starting this supplementation.
While my homocysteine level could be affected by any of the 3, B12, B6 and folate, the fact that it responded so quickly to the mega doses of mehtylcobalamin indicates that this methyl donor was lacking, ie a functional deficiency.
We still don't know why.